English
PtDA . | Treatment options . | Author(s) and/or developing organization . | Date developed or updated . | Country and language . | Format . | Availability . | Source of identification . |
---|---|---|---|---|---|---|---|
ADVICE: Navigating Aortic Valve Treatment Choices | Brennan ., Duke University | 2017 | USA, English | Web based | Not available: Website deactivated. | Literature identified via online sources | |
Aortic Stenosis Choice (CHOICE-AS) , | Lauck . | Ongoing | Canada, English | Web based | Not currently available. PtDA development and testing study ongoing. Contact authors for access. | Online sources | |
Aortic valve improved treatment approaches (AVITA) tool | Shared Decision-Making Resources collaborating with Edward Lifesciences | Ongoing | USA, English | Web based | Not currently available. PtDA development and pilot study ongoing. Contact authors for access. | Trial registry NCT04755426 | |
A decision aid for treatment options for severe aortic stenosis (TAVI vs. symptom management) | American College of Cardiology | August 2017 | USA, English, Spanish, French | Eight-page booklet (pdf) | Literature | ||
A decision aid for treatment options for severe aortic stenosis for patients deciding between TAVI and surgery | American College of Cardiology | July 2020 | USA, English, Spanish, French | Eight-page booklet (pdf) | Literature , | ||
Severe Aortic Stenosis Decision Aid | American College of Cardiology | 2014 | USA, English | One-page pdf | and available in in published study | Literature | |
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk: for patients above 85 years with severe symptomatic aortic stenosis, at low or intermediate perioperative risk | MAGIC Evidence Ecosystem Foundation (BMJ RapidRecs) | May 2017 | Multiple countries, English, Norwegian; partial translation into 12 other languages on website | Web based with option to create a 13-page pdf | Online sources | ||
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk: for patients 75–85 years with severe symptomatic aortic stenosis who are at low or intermediate perioperative risk | MAGIC Evidence Ecosystem Foundation (BMJ RapidRecs) | May 2017 | Multiple countries, English, Norwegian; partial translation into 12 other languages on website | Web based with option to create a 13-page pdf | Online sources | ||
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk: for patients aged 65 to <75 years and eligible for transfemoral TAVI or SAVR | MAGIC Evidence Ecosystem Foundation (BMJ RapidRecs) | May 2017 | Multiple countries, English, Norwegian; partial translation into 12 other languages on website | Web based with option to create a 13-page pdf | Online sources | ||
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk: for patients aged <65 years and eligible for transfemoral TAVI or SAVR | MAGIC Evidence Ecosystem Foundation (BMJ RapidRecs) | May 2017 | Multiple countries, English, Norwegian; partial translation into 12 other languages on website | Web based with option to create a 13-page pdf | Online sources | ||
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk who cannot undergo transfemoral TAVR but can undergo transapical approach | MAGIC Evidence Ecosystem Foundation (BMJ RapidRecs) | May 2017 | Multiple countries, English, Norwegian; partial translation into 12 other languages on website | Web-based with option to create a 13-page pdf | Online sources | ||
Angina treatment: stents, drugs, lifestyle changes—What's best? | Mayo Clinic | May 2021 | USA, English | Web based | Online sources | ||
Angina: treatment options, Option Grid™ | Option Grid Collaborative | 2015/16 | USA, English | Web based | Out of date: no longer available. | Literature | |
Chest pain (stable angina) treatment options, Option Grid™ | DynaMed Decisions, EBSCO Health | December 2021. Updated when new relevant scientific evidence becomes available | USA, English | Web based with option to create a 4-page pdf | Not publicly available. Contact EBSCO Health for cost ( ). | Online sources | |
CONNECT: COroNary aNgioplasty dECision Tool | Harris | February 2021 | UK, English | Web based | Not currently publicly available. Randomized feasibility study ongoing. Contact authors for access. | Literature | |
Coronary artery disease: What treatment would you prefer? | Duke University Medical Center clinicians and Healthwise | 2015 | USA, English | Web based; eight-page paper version available within publication | Web version: access unknown. Paper version shown in the in published study | Literature | |
Deciding what to do about stable angina | NHS England Vale of York Clinical Commissioning Group | January 2017 | UK, English | Nine-page pdf | Online sources | ||
PCI Choice: Class I/II Stable Angina | Mayo Foundation for Medical Education and Research | 2012 | USA, English | Two-page pdf | Literature , | ||
PCI Choice: Class III Stable Angina | Mayo Foundation for Medical Education and Research | 2012 | USA, English | Two-page pdf | Literature , | ||
Should I have angioplasty for stable chest angina? | Healthwise | Updated 2022 | USA, English | Web-based with option to create a 19-page ‘printer friendly’ version | Licence required for distribution to patients or consumers. | Literature | |
Treatment choices for stable chest discomfort | Health Dialog and Foundation for Informed Medical Decision Making | 2014 version | USA, English | Booklet (36-page paper) and DVD (20 min) | Not publicly available. Contact Health Dialog for cost. | Literature |
a https://sharedcardiology.org .
b European Society of Cardiology Website https://www.escardio.org/ .
c The Ottawa Hospital Research Institute Decision Aid Library Inventory https://decisionaid.ohri.ca/index.html .
d EBSCO Health care https://www.ebsco.com/health-care/products/my-health-decisions .
e Vale of York NHS https://www.valeofyorkccg.nhs.uk/rss/home/patient-decision-making/shared-decision-making/ .
The characteristics of eight PtDAs for AS were evaluated ( Table 2 ). 39 , 41 , 43–48 The remaining three were unavailable for evaluation due to website deactivation 34 or ongoing development. 36 , 38
Characteristics of patient decision aids
PtDA . | Format and delivery . | Design and development . | EVC method . | Tx preference indication . | Other interaction . | Risk/benefits presentation . | Patient stories . | No. of IPDAS criteria achieved . |
---|---|---|---|---|---|---|---|---|
A decision aid for treatment options for severe aortic stenosis (TAVI vs. Symptom Management) | Paper booklet reviewed by patient pre-consultation | Colour text, graphics, text boxes, photos of people, images to explain disease and procedure. 15-min video on website. Development not described. | Four questions with open-text responses about hopes, concerns, questions for HCPs and family | None | — | Side-by-side list and icon arrays (100 heart icons); natural frequencies (denominator: 100); positive and negative framing | Two scenarios. Patient’s Tx choice shown | Fully: 11 Partially: 0 Not met: 1 |
A decision aid for treatment options for severe aortic stenosis for patients deciding between TAVI and surgery | Paper booklet reviewed by patient pre-consultation | Colour text, graphics, text boxes, photos of people, images to explain disease and procedure. 18.5-min video on website. Development not described. | Four questions with open-text responses about hopes, concerns, questions for HCPs and family | None | — | Side-by-side list and icon arrays (10 people icons); natural frequencies (denominator: 10 and 100); mostly negative framing used; positive and negative used for survival | Two scenarios. Patient’s Tx choice shown | Fully: 11 Partially: 1 Not met: 0 |
Severe Aortic Stenosis Decision Aid | Brief one-page paper ‘Encounter PtDA’ reviewed during consultation with HCP | Colour text, text boxes, graphs Development briefly described | Conversation guide with 1 question asking the patient ‘What matters most to you?’ | Open-text response to indicate patient and HCP’s shared decision | — | Side-by-side list, icon arrays (100 circles) and line graphs; positive and negative framing | None | N/A |
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk (5 versions for different age groups ) | Web-based interactive ‘Encounter PtDA’ reviewed during consultation with HCP | Text, pop-up boxes, black/white icons Clinical content review described on website. Option to download as pdf. | None | None | Web version only: HCP navigates between sections to guide discussion and explore outcomes the patient wants to discuss | Icon arrays (1000 people icons); side-by-side natural frequencies (denominator: 1000); mix of positive or negative framing | None | Fully: 8 Partially: 3 Not met: 1 |
Angina treatment: stents, drugs, lifestyle changes—What's best? | Website. Delivery not specified | Text, colour image to explain procedure. Development not described. | None | None | — | Only states one risk (blockage re-forming). Likelihood not provided. | None | Fully: 5 Partially: 2 Not met: 5 |
CONNECT: COroNary aNgioplasty dECision Tool , | Web-based reviewed by patient pre-consultation. Personalised summary to be shared with HCP during consultation | Text, drop-down boxes, pop-up boxes, tables, colour icons, colour diagrams to explain disease and procedure, multiple short animated videos, photos of people. Development fully described. | Open-text box for patient to add the top 3 things that matter most to them when considering their Tx options | Multiple-choice question with ‘not sure’ as an option. A smiley face 5-point Likert scale to indicate level of certainty with choice | Patient input: navigation between sections; six-item multiple-choice Angina Symptom Evaluation Questionnaire; Open-text box to add worries or questions. Generates personal summary of answers. | Side-by-side comparison table; icon arrays (1000 people icons for PCI risks, 100 people for benefits of both options); natural frequencies (denominator: 1000 and 5000); positive and negative framing | Text and audio quotes from 5 fictional patients. Tx choice not shown. | Fully: 12 Partially: 0 Not met: 0 |
Coronary artery disease: What treatment would you prefer? (paper version only) | Web and paper reviewed by patient on the day of diagnostic angiogram | Paper version: Text, colour graphics, table, pictures and icons, colour diagrams to explain disease and procedures. Development described briefly. | None | One question asking patient to record preferred Tx | — | Side-by-side lists; icon arrays (100 people icons); natural frequencies (denominator: 1000); negative framing | None | Fully: 9 Partially: 0 Not met: 3 |
Deciding what to do about stable angina | Paper based reviewed by patient pre-consultation or with HCP during consultation | Text, diagram, tables. Development not described. | None | None | Six questions for the patient to consider (no space for patient answers) | Side-by-side comparison table; positively framed natural frequencies for symptom improvement for PCI/CABG option only (denominator: 100); negatively framed natural frequencies (denominator: 100) for medicines option; descriptive words for PCI and CABG (small, low, and higher) | None | Fully: 9 Partially: 1 Not met: 2 |
PCI choice (two versions for either Class I/II or Class III Stable Angina , ) | Brief two-page paper ‘Encounter PtDA’ reviewed during consultation with HCP | Colour text, text boxes, colour icons. Development fully described. | None | Two questions asking for preferred Tx | None | Side-by-side icon arrays (100 circles icons); natural frequencies (denominator: 100) with positive and negative framing | None | N/A |
Should I have angioplasty for stable chest angina? | Web-based pre-consultation. Delivery determined by distributor. In publication, the link to the PtDA website was e-mailed to patients’ pre-consultation. | Web: Text, drop-down boxes, pop-up boxes, tables, colour diagrams to explain procedure with real angiogram X-ray image. Clinical content review described on website. Option to download as pdf. | Rating scales: Four 7-point ‘importance’ Likert scales for three pre-set attributes and 1 open-box for patient to add other important attributes/values. | Two 7-point Likert scales to indicate preferred Tx and level of certainty with choice | Patient input: navigation between sections; three-item yes/no knowledge test; 3 yes/no questions about support and understanding, open-text box to add worries or questions. Generates personal summary of answers. | Side-by-side list; icon arrays (100 people icons); side-by-side natural frequencies (denominator: 100) with positive and negative framing for benefits; negative framing for PCI risks | Quotes from four fictional patients. Tx choice shown. | Fully: 9 Partially: 3 Not met: 0 |
PtDA . | Format and delivery . | Design and development . | EVC method . | Tx preference indication . | Other interaction . | Risk/benefits presentation . | Patient stories . | No. of IPDAS criteria achieved . |
---|---|---|---|---|---|---|---|---|
A decision aid for treatment options for severe aortic stenosis (TAVI vs. Symptom Management) | Paper booklet reviewed by patient pre-consultation | Colour text, graphics, text boxes, photos of people, images to explain disease and procedure. 15-min video on website. Development not described. | Four questions with open-text responses about hopes, concerns, questions for HCPs and family | None | — | Side-by-side list and icon arrays (100 heart icons); natural frequencies (denominator: 100); positive and negative framing | Two scenarios. Patient’s Tx choice shown | Fully: 11 Partially: 0 Not met: 1 |
A decision aid for treatment options for severe aortic stenosis for patients deciding between TAVI and surgery | Paper booklet reviewed by patient pre-consultation | Colour text, graphics, text boxes, photos of people, images to explain disease and procedure. 18.5-min video on website. Development not described. | Four questions with open-text responses about hopes, concerns, questions for HCPs and family | None | — | Side-by-side list and icon arrays (10 people icons); natural frequencies (denominator: 10 and 100); mostly negative framing used; positive and negative used for survival | Two scenarios. Patient’s Tx choice shown | Fully: 11 Partially: 1 Not met: 0 |
Severe Aortic Stenosis Decision Aid | Brief one-page paper ‘Encounter PtDA’ reviewed during consultation with HCP | Colour text, text boxes, graphs Development briefly described | Conversation guide with 1 question asking the patient ‘What matters most to you?’ | Open-text response to indicate patient and HCP’s shared decision | — | Side-by-side list, icon arrays (100 circles) and line graphs; positive and negative framing | None | N/A |
TAVI vs. SAVR for patients with severe symptomatic aortic stenosis at low to intermediate perioperative risk (5 versions for different age groups ) | Web-based interactive ‘Encounter PtDA’ reviewed during consultation with HCP | Text, pop-up boxes, black/white icons Clinical content review described on website. Option to download as pdf. | None | None | Web version only: HCP navigates between sections to guide discussion and explore outcomes the patient wants to discuss | Icon arrays (1000 people icons); side-by-side natural frequencies (denominator: 1000); mix of positive or negative framing | None | Fully: 8 Partially: 3 Not met: 1 |
Angina treatment: stents, drugs, lifestyle changes—What's best? | Website. Delivery not specified | Text, colour image to explain procedure. Development not described. | None | None | — | Only states one risk (blockage re-forming). Likelihood not provided. | None | Fully: 5 Partially: 2 Not met: 5 |
CONNECT: COroNary aNgioplasty dECision Tool , | Web-based reviewed by patient pre-consultation. Personalised summary to be shared with HCP during consultation | Text, drop-down boxes, pop-up boxes, tables, colour icons, colour diagrams to explain disease and procedure, multiple short animated videos, photos of people. Development fully described. | Open-text box for patient to add the top 3 things that matter most to them when considering their Tx options | Multiple-choice question with ‘not sure’ as an option. A smiley face 5-point Likert scale to indicate level of certainty with choice | Patient input: navigation between sections; six-item multiple-choice Angina Symptom Evaluation Questionnaire; Open-text box to add worries or questions. Generates personal summary of answers. | Side-by-side comparison table; icon arrays (1000 people icons for PCI risks, 100 people for benefits of both options); natural frequencies (denominator: 1000 and 5000); positive and negative framing | Text and audio quotes from 5 fictional patients. Tx choice not shown. | Fully: 12 Partially: 0 Not met: 0 |
Coronary artery disease: What treatment would you prefer? (paper version only) | Web and paper reviewed by patient on the day of diagnostic angiogram | Paper version: Text, colour graphics, table, pictures and icons, colour diagrams to explain disease and procedures. Development described briefly. | None | One question asking patient to record preferred Tx | — | Side-by-side lists; icon arrays (100 people icons); natural frequencies (denominator: 1000); negative framing | None | Fully: 9 Partially: 0 Not met: 3 |
Deciding what to do about stable angina | Paper based reviewed by patient pre-consultation or with HCP during consultation | Text, diagram, tables. Development not described. | None | None | Six questions for the patient to consider (no space for patient answers) | Side-by-side comparison table; positively framed natural frequencies for symptom improvement for PCI/CABG option only (denominator: 100); negatively framed natural frequencies (denominator: 100) for medicines option; descriptive words for PCI and CABG (small, low, and higher) | None | Fully: 9 Partially: 1 Not met: 2 |
PCI choice (two versions for either Class I/II or Class III Stable Angina , ) | Brief two-page paper ‘Encounter PtDA’ reviewed during consultation with HCP | Colour text, text boxes, colour icons. Development fully described. | None | Two questions asking for preferred Tx | None | Side-by-side icon arrays (100 circles icons); natural frequencies (denominator: 100) with positive and negative framing | None | N/A |
Should I have angioplasty for stable chest angina? | Web-based pre-consultation. Delivery determined by distributor. In publication, the link to the PtDA website was e-mailed to patients’ pre-consultation. | Web: Text, drop-down boxes, pop-up boxes, tables, colour diagrams to explain procedure with real angiogram X-ray image. Clinical content review described on website. Option to download as pdf. | Rating scales: Four 7-point ‘importance’ Likert scales for three pre-set attributes and 1 open-box for patient to add other important attributes/values. | Two 7-point Likert scales to indicate preferred Tx and level of certainty with choice | Patient input: navigation between sections; three-item yes/no knowledge test; 3 yes/no questions about support and understanding, open-text box to add worries or questions. Generates personal summary of answers. | Side-by-side list; icon arrays (100 people icons); side-by-side natural frequencies (denominator: 100) with positive and negative framing for benefits; negative framing for PCI risks | Quotes from four fictional patients. Tx choice shown. | Fully: 9 Partially: 3 Not met: 0 |
EVC, explicit values clarification; HCP, healthcare professional; Tx, treatment
a Only paper version evaluated, web version unavailable.
Two types of PtDAs were identified: a PtDA booklet (eight pages) to be reviewed by the patient at home 39 , 41 and an ‘encounter PtDA’ (paper or web-based) to be used during the consultation with a health professional. 43–48 The type and presentation of information varied between PtDAs. One ‘encounter PtDA’ presented information about the risks and benefits of treatment options on a single page, 43 whereas the other ‘encounter PtDAs’ were web based and required health professionals to navigate between different sections to present the information. 44–48 All PtDAs included icon arrays to present the risks and benefits of treatment options. Patient stories were only included in the two booklet PtDAs. 39 , 41 Three PtDAs incorporated an explicit values clarification method 39 , 41 , 43 (i.e. determining what matters to patients about a given health decision by using an approach that requires interaction 12 ). The method in the two booklet PtDAs invited patients to write their hopes and concerns for the treatment options and any questions for their doctor and family. 39 , 41 The one-page ‘encounter PtDA’ invited patients to verbally respond to the question during a consultation, about what was important to them about their treatment. 43 This was the only PtDA to invite patients to indicate their preferred treatment. The readability score was not reported for any PtDA. Two PtDAs did not report their development method. 39 , 41
Seven PtDAs 39 , 41 , 44–48 were included for quality appraisal using the recommended IPDAS checklist (‘encounter PtDAs’ were excluded 43 ). Results are summarized in Table 2 (full evaluation in Supplementary material online , Table S10 ). To ‘qualify’ as a PtDA, six IPDAS criteria need to be achieved; only the two booklet PtDAs fulfilled these. 39 , 41 In total, the PtDAs fulfilled between 67% and 92% (median 67%) of all 12 IPDAS criteria. Two IPDAS criteria were not achieved by all PtDAs: ‘describes the condition related to the decision’ and ‘the level of uncertainty around outcome probabilities’ (i.e. the likelihood of an adverse or positive outcome occurring following treatment).
Availability of patient decision aids for coronary artery disease.
Ten PtDAs designed for patients with chronic CAD considering PCI were identified ( Table 1 ). The comparative treatment options presented were medical therapy ( n = 10), lifestyle changes ( n = 4), and coronary artery bypass graft (CABG) surgery ( n = 4). The two ‘PCI Choice’ PtDAs 58 , 61 included the same content but adapted the risks/benefits probabilities for either Class I/II or Class III stable angina. Eight PtDAs were developed in the USA 49 , 50 , 52 , 55 , 58 , 61 , 62 , 64 and two in the UK, 53 , 57 and all were only available in English. Six were web-based PtDAs 49 , 50 , 52 , 53 , 55 , 62 and four were paper based 57 , 58 , 61 , 64 (one also included a 20-min DVD 64 ). One web-based PtDA had a paper-based version 55 and two others could be converted into a printable format. 52 , 62 Four PtDAs were less than five years old 49 , 52 , 53 , 62 but only one was publicly available. 49 This PtDA 49 fulfilled only five of the 12 IPDAS criteria.
The characteristics of seven PtDAs for chronic CAD were evaluated ( Table 2 ). 49 , 53 , 55 , 57 , 58 , 61 , 62 The remaining three were unavailable for evaluation. 50 , 52 , 64
The type of PtDA, approach, and time point of use in the patient journey varied. Two were short paper-based ‘encounter PtDAs’ (PCI Choice 58 , 61 ) to be used by the doctor with the patient in a consultation prior to diagnostic cardiac catheterization. Three web-based PtDAs 53 , 62 (one had a paper version option 55 ) could be reviewed by patients either at home or whilst in hospital before the procedure. One paper-based PtDA could be used either pre-consultation or during the consultation. 57 Details about the delivery of one web-based PtDA were absent. 49 The design of PtDAs varied from a basic table comparing treatments with the use of multi-media to explain health conditions, treatment options, and procedures. Treatment risks and benefits were presented using a wide range of approaches. All but two 49 , 57 included icon arrays to convey the likelihood of risks and benefits. One PtDA 49 omitted the major risks associated with PCI. Patient stories/scenarios were included in two PtDAs. 53 , 62 Two PtDAs included explicit value clarification methods: a rating scale 62 and completion of questions about what matters to them and their concerns. 53 Five PtDAs invited patients to indicate their preferred treatment. 53 , 55 , 58 , 61 , 62 A personalized summary of patients’ responses could be generated in two web-based PtDAs. 53 , 62 The readability level was not stated within any PtDA, although associated publications for two PtDAs reported the target reading age as eighth grade (age 13–14 years). 54 , 56 Development information was published, in varying detail, for some PtDAs, 53 , 55 , 58 , 61 two omitted this information, 49 , 57 whilst brief details about the development of clinical content were described for the remainder on the developers’ websites. 62
Five PtDAs 49 , 53 , 55 , 57 , 62 were included for quality appraisal (two ‘encounter PtDAs’ were excluded 58 , 61 ; Table 2 ). Three PtDAs 53 , 55 , 62 completely fulfilled the six IPDAS ‘qualify’ criteria (see Supplementary material online , Table S10 ). In total, the five PtDAs fulfilled between 42% and 100% (median 75%) of all 12 IPDAS criteria. Two PtDAs 53 , 62 fully or partially achieved all 12 IPDAS criteria but are not currently publicly available to patients. The IPDAS criteria least fulfilled across the PtDAs were ‘providing information about the funding source’, ‘the updated policy’, and ‘the level of uncertainty around outcome probabilities’.
Table 3 provides an overview of the 10 studies included in the review (full details in Supplementary material online , Table S1 ). One study was conducted in the UK 54 and the remainder in the USA. Three reported on PtDA development and acceptability testing, 35 , 54 , 59 and seven evaluated PtDA effectiveness in either an RCT 42 , 60 or a quasi-experimental design. 20 , 40 , 51 , 56 , 63
Overview of studies
Study details . | Study design . | Methods, sample, and setting . | Results . | No. of SUNDAE items met . |
---|---|---|---|---|
treatment options | ||||
Brennan ., 2020, USA | Multi-methods development study of risk calculator and PtDA for patients with AS ( ) | Setting: Duke University Medical Center 1) Development of risk calculator: Patient survey (SAVR = 10; TAVR = 10); registry data review and questionnaire by 3 caregivers and 5 patients to identify patient characteristics to include in risk models. 2) Feedback on risk calculator: 4 rounds of semi-structured interviews with 6 TAVR and SAVR patients and caregivers. 3) SDM education resource development: multiple teleconference calls with a multi-disciplinary team including 7 patients and 3 caregivers to determine content. 4) Feedback on PtDA: Review by patient and caregiver stakeholders and semi-structured interviews with 6 patients scheduled for TAVR. | = 817. | Fully: 13 Partially: 3 Not met: 2 N/a: 8 |
Coylewright . 2020, USA | Single-centre non-randomized pre-test post-test pilot study with 3 patient groups: UC (no PtDA); cardiologist’s 1st use of PtDA ( ; ) cardiologist’s 5th use of PtDA | Setting: 2 TAVR centres in Northern New England 35 patients (56% female) with severe AS, at high or prohibitive surgical risk, for whom HCPs agree potential equipoise for TAVR and SAVR. UC: Each cardiologist ( = 4) or pair ( = 1) audio recorded a consultation without PtDA with 5 patients each (25 total). Patients’ mean (SD) age: 85 (7.5) years; 75% achieved high-school education or greater. 1st use of PtDA: Each cardiologist/pair used the PtDA with 1 patient (5 total). Patients’ mean (SD) age: 82 (10.5) years; 100% achieved high-school education or greater (1 missing response). 5th use of PtDA: Each cardiologist/pair’s 5th time of using the PtDA with a patient ( = 5). Patients’ mean (SD) age : 93 (2.7) years; 80% achieved high-school education or greater. | Full: 19 Partial: 4 No: 3 N/a: 0 | |
Einfeld, 2020, USA | Single-centre uncontrolled pre-post intervention (peer support and use of PtDAs in patients considering TAVR) pilot study with 1 patient group 2 PtDAs: and | Setting: Community hospital in Pacific Northwest Patients with AS ( = 12; 63–89 years; 42% Female) eligible for TAVR participated in peer-support (Mended Hearts programme). TAVR PtDAs integrated into UC consultations. | Full: 19 Partial: 3 Not: 4 N/a: 0 | |
., 2022, USA | Single-centre pilot 1:1 RCT (PtDA vs. UC) of a PtDA delivered to patients with AS considering TAVR or SAVR PtDA: Comparator: UC in-clinic discussion of treatment options, risks, and benefits, and an animation of the TAVR procedure. No written materials. | Setting: Massachusetts General Hospital, USA Patients ( = 60, 100% White) with mild or moderate AS being assessed for either TAVR or surgical SAVR were randomized to PtDA or UC group. PtDA ( = 31): mean age 74 (SD 6) years; 39% female; 89% achieved college education or greater. UC ( = 28): mean age 71 (SD 8) years; 25% female; 75% achieved college education or greater. | 68% reported reviewing all the PtDA | Full: 19 Partial: 2 Not: 4 N/a: 1 |
treatment options | ||||
Coylewright ., 2012, USA | Multi-phase development and single-centre acceptability study of PtDA ( , ) for patients with stable CAD facing treatment with either OMT or PCI + OMT | Setting: Mayo clinic 1) Evidence review and synthesis. 3) Prototype PtDA developed by 2 HCPs plus designer. 4) Tested by Diabetes Research Advisory Group (15–20 community members with DM), and Cardiovascular Patient and Family Advisory Council (over 25 patients and family members) to develop first prototype. 5) Observed use in clinical setting with 25 patients. Revised PtDA over 1–2 weeks after each clinical observation. | Fully: 13 Partially:5 Not met: 0 N/a: 8 | |
., 2016, USA | Single-centre, randomized controlled (1:1) trial of PtDA ( , ) vs. UC (no PtDA) | Setting: Mayo clinic 124 Patients with stable CAD considering OMT +/− PCI treatment randomized to PtDA or UC group. PtDA ( = 65): mean age 69 (SD 10.9) years; 28% female; 100% White; 65% achieved college education or greater UC ( = 59): mean age 68 (SD 10.2) years; 25% female; 98% White; 71% achieved college education or greater. | Full: 18 Partial: 5 No: 3 N/a: 0 | |
., 2019, USA | Two-part study: A) Single-centre prospective non-randomized controlled pre-post-test study of PtDA ( ) vs. UC (no PtDA, no treatment preferences) B) Pilot cluster randomized study embedded within above study | Setting: Duke University Hospital. A) 203 patients with chest pain, angina (acute and chronic) or NSTEMI, referred for diagnostic coronary angiography and considering treatment with either medical therapy, PCI or CABG, non-randomized to PtDA or UC group. UC ( = 100): median age (IQR) 64 (56–70) years; 34% female; 76% White; 63% achieved college education or greater; Health literacy mean (SD) 2 (2.6). PtDA ( = 103): median age (IQR) 63 (55–72) years; 43% female; 71% White; 71% achieved college education or greater; Health literacy mean (SD) 1.5 (2.1). B) 103 patients in PtDA group randomized 50:53 to preference group (cardiologist received patients’ treatment preferences) or control group (preferences not shared). | Full: 13 Partial: 8 Not: 5 N/a: 0 | |
Harris ., 2022, UK | Multi-phase, multi-centre development and acceptability testing of a PtDA for people with stable angina considering elective coronary angioplasty treatment ( ) | Setting: 2 District General Hospitals in Northern England. 34 patients and 29 HCPs in total involved in various stages 1) Steering Group convened, evidence review, and 3 co-design workshops with 4 cardiologists, 9 nurses, and 9 members of heart support groups. 2) Alpha-testing of prototype 1 (cognitive interviews and acceptability questionnaire) with 9 HCPs and 6 patients, 1 patient/partner dyad in non-clinical settings. Patient sample: mean age 63 (SD 11) years; 29% female; 85% achieved college education; 71% had adequate HL. 3) PtDA refined and prototype 2 developed following consultations with 10 service users, 7 HCPs and the Steering Group. Feedback on prototype 2 collated from 9 new volunteers from community heart support groups, 1 Steering Group lay member, and 2 consultant cardiologists. | Full: 16 Partial: 2 Not: 0 N/a: 8 | |
Hinsberg ., 2018, USA | Single-centre randomized comparator pilot trial to compare effects of two PtDAs for stable angina. DVD/booklet PtDA: Web-based PtDA: | Setting: Massachusetts General Hospital Heart Centre Patients ( = 28) who had recently made decisions about treatment of stable CAD were randomized to DVD/paper booklet PtDA or web-based PtDA. DVD/booklet PtDA ( = 15): mean age 73 (SD 11.6) years; 60% female; 100% White; 80% achieved college education or greater. Web-based PtDA ( = 13): mean age 67 (SD 10.62) years; 23% female; 92% White; 54% achieved college education or greater. | = 0.05) | Full: 19 Partial: 4 Not: 2 N/a: 1 |
Scalia ., 2018, USA | Cross-sectional observational study to evaluate whether Option Grid PtDAs change treatment preferences and which items of the PtDA are most important to users PtDA: | Audit data collected from users of Option Grid PtDAs who had an account on the Option Grid website, over a 19-month period (June 2015 onwards). User responses in the PtDAs were collected from the top 5 most-used PtDAs. The Angina PtDA was accessed and fully completed by 88 users (47% female; 11% Hispanic, 46% not Hispanic, 43% ethnicity not stated; age range: 11% 20–30 years, 16% 31–40 years, 18% 41–50 years, 17% 51–60 years, 10% ≥60 years, 27% not stated). | For Angina treatment options: no significant preference shift between medical management and stenting; = 0.200. | Full: 16 Partial: 6 Not: 2 N/a: 2 |
Study details . | Study design . | Methods, sample, and setting . | Results . | No. of SUNDAE items met . |
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treatment options | ||||
Brennan ., 2020, USA | Multi-methods development study of risk calculator and PtDA for patients with AS ( ) | Setting: Duke University Medical Center 1) Development of risk calculator: Patient survey (SAVR = 10; TAVR = 10); registry data review and questionnaire by 3 caregivers and 5 patients to identify patient characteristics to include in risk models. 2) Feedback on risk calculator: 4 rounds of semi-structured interviews with 6 TAVR and SAVR patients and caregivers. 3) SDM education resource development: multiple teleconference calls with a multi-disciplinary team including 7 patients and 3 caregivers to determine content. 4) Feedback on PtDA: Review by patient and caregiver stakeholders and semi-structured interviews with 6 patients scheduled for TAVR. | = 817. | Fully: 13 Partially: 3 Not met: 2 N/a: 8 |
Coylewright . 2020, USA | Single-centre non-randomized pre-test post-test pilot study with 3 patient groups: UC (no PtDA); cardiologist’s 1st use of PtDA ( ; ) cardiologist’s 5th use of PtDA | Setting: 2 TAVR centres in Northern New England 35 patients (56% female) with severe AS, at high or prohibitive surgical risk, for whom HCPs agree potential equipoise for TAVR and SAVR. UC: Each cardiologist ( = 4) or pair ( = 1) audio recorded a consultation without PtDA with 5 patients each (25 total). Patients’ mean (SD) age: 85 (7.5) years; 75% achieved high-school education or greater. 1st use of PtDA: Each cardiologist/pair used the PtDA with 1 patient (5 total). Patients’ mean (SD) age: 82 (10.5) years; 100% achieved high-school education or greater (1 missing response). 5th use of PtDA: Each cardiologist/pair’s 5th time of using the PtDA with a patient ( = 5). Patients’ mean (SD) age : 93 (2.7) years; 80% achieved high-school education or greater. | Full: 19 Partial: 4 No: 3 N/a: 0 | |
Einfeld, 2020, USA | Single-centre uncontrolled pre-post intervention (peer support and use of PtDAs in patients considering TAVR) pilot study with 1 patient group 2 PtDAs: and | Setting: Community hospital in Pacific Northwest Patients with AS ( = 12; 63–89 years; 42% Female) eligible for TAVR participated in peer-support (Mended Hearts programme). TAVR PtDAs integrated into UC consultations. | Full: 19 Partial: 3 Not: 4 N/a: 0 | |
., 2022, USA | Single-centre pilot 1:1 RCT (PtDA vs. UC) of a PtDA delivered to patients with AS considering TAVR or SAVR PtDA: Comparator: UC in-clinic discussion of treatment options, risks, and benefits, and an animation of the TAVR procedure. No written materials. | Setting: Massachusetts General Hospital, USA Patients ( = 60, 100% White) with mild or moderate AS being assessed for either TAVR or surgical SAVR were randomized to PtDA or UC group. PtDA ( = 31): mean age 74 (SD 6) years; 39% female; 89% achieved college education or greater. UC ( = 28): mean age 71 (SD 8) years; 25% female; 75% achieved college education or greater. | 68% reported reviewing all the PtDA | Full: 19 Partial: 2 Not: 4 N/a: 1 |
treatment options | ||||
Coylewright ., 2012, USA | Multi-phase development and single-centre acceptability study of PtDA ( , ) for patients with stable CAD facing treatment with either OMT or PCI + OMT | Setting: Mayo clinic 1) Evidence review and synthesis. 3) Prototype PtDA developed by 2 HCPs plus designer. 4) Tested by Diabetes Research Advisory Group (15–20 community members with DM), and Cardiovascular Patient and Family Advisory Council (over 25 patients and family members) to develop first prototype. 5) Observed use in clinical setting with 25 patients. Revised PtDA over 1–2 weeks after each clinical observation. | Fully: 13 Partially:5 Not met: 0 N/a: 8 | |
., 2016, USA | Single-centre, randomized controlled (1:1) trial of PtDA ( , ) vs. UC (no PtDA) | Setting: Mayo clinic 124 Patients with stable CAD considering OMT +/− PCI treatment randomized to PtDA or UC group. PtDA ( = 65): mean age 69 (SD 10.9) years; 28% female; 100% White; 65% achieved college education or greater UC ( = 59): mean age 68 (SD 10.2) years; 25% female; 98% White; 71% achieved college education or greater. | Full: 18 Partial: 5 No: 3 N/a: 0 | |
., 2019, USA | Two-part study: A) Single-centre prospective non-randomized controlled pre-post-test study of PtDA ( ) vs. UC (no PtDA, no treatment preferences) B) Pilot cluster randomized study embedded within above study | Setting: Duke University Hospital. A) 203 patients with chest pain, angina (acute and chronic) or NSTEMI, referred for diagnostic coronary angiography and considering treatment with either medical therapy, PCI or CABG, non-randomized to PtDA or UC group. UC ( = 100): median age (IQR) 64 (56–70) years; 34% female; 76% White; 63% achieved college education or greater; Health literacy mean (SD) 2 (2.6). PtDA ( = 103): median age (IQR) 63 (55–72) years; 43% female; 71% White; 71% achieved college education or greater; Health literacy mean (SD) 1.5 (2.1). B) 103 patients in PtDA group randomized 50:53 to preference group (cardiologist received patients’ treatment preferences) or control group (preferences not shared). | Full: 13 Partial: 8 Not: 5 N/a: 0 | |
Harris ., 2022, UK | Multi-phase, multi-centre development and acceptability testing of a PtDA for people with stable angina considering elective coronary angioplasty treatment ( ) | Setting: 2 District General Hospitals in Northern England. 34 patients and 29 HCPs in total involved in various stages 1) Steering Group convened, evidence review, and 3 co-design workshops with 4 cardiologists, 9 nurses, and 9 members of heart support groups. 2) Alpha-testing of prototype 1 (cognitive interviews and acceptability questionnaire) with 9 HCPs and 6 patients, 1 patient/partner dyad in non-clinical settings. Patient sample: mean age 63 (SD 11) years; 29% female; 85% achieved college education; 71% had adequate HL. 3) PtDA refined and prototype 2 developed following consultations with 10 service users, 7 HCPs and the Steering Group. Feedback on prototype 2 collated from 9 new volunteers from community heart support groups, 1 Steering Group lay member, and 2 consultant cardiologists. | Full: 16 Partial: 2 Not: 0 N/a: 8 | |
Hinsberg ., 2018, USA | Single-centre randomized comparator pilot trial to compare effects of two PtDAs for stable angina. DVD/booklet PtDA: Web-based PtDA: | Setting: Massachusetts General Hospital Heart Centre Patients ( = 28) who had recently made decisions about treatment of stable CAD were randomized to DVD/paper booklet PtDA or web-based PtDA. DVD/booklet PtDA ( = 15): mean age 73 (SD 11.6) years; 60% female; 100% White; 80% achieved college education or greater. Web-based PtDA ( = 13): mean age 67 (SD 10.62) years; 23% female; 92% White; 54% achieved college education or greater. | = 0.05) | Full: 19 Partial: 4 Not: 2 N/a: 1 |
Scalia ., 2018, USA | Cross-sectional observational study to evaluate whether Option Grid PtDAs change treatment preferences and which items of the PtDA are most important to users PtDA: | Audit data collected from users of Option Grid PtDAs who had an account on the Option Grid website, over a 19-month period (June 2015 onwards). User responses in the PtDAs were collected from the top 5 most-used PtDAs. The Angina PtDA was accessed and fully completed by 88 users (47% female; 11% Hispanic, 46% not Hispanic, 43% ethnicity not stated; age range: 11% 20–30 years, 16% 31–40 years, 18% 41–50 years, 17% 51–60 years, 10% ≥60 years, 27% not stated). | For Angina treatment options: no significant preference shift between medical management and stenting; = 0.200. | Full: 16 Partial: 6 Not: 2 N/a: 2 |
* Statistical significance ( P < 0.05)
** Sum of scores on three-item questionnaire, max score, 12; lower values indicate higher health literacy.
↔: no change; ↑: higher value/score; ↓: lower value/score.
AS, aortic stenosis; CAD, coronary artery disease; CSE, cardiac self-efficacy; DAOH, days alive and out of hospital; DCS, decisional conflict scale; DM, diabetes mellitus; GAD-7, generalized anxiety disorder-7; IPDAS, International Patient Decision Aid Standards; NS, not significant ( P > 0.05); OMT, optimal medical therapy; PCI, percutaneous coronary intervention; PtDA, patient decision aid; RCT, randomized controlled trial; SD, standard deviation; SDM, shared decision-making; SAVR, surgical aortic valve replacement; TAVR, transcatheter aortic valve replacement; UC, usual care.
One study 35 described the development of a PtDA for AS (TAVI vs. SAVR 34 ) that is no longer available, and two studies 54 , 59 described the development and acceptability of PtDAs for chronic CAD (PCI vs. medicines only; PCI Choice 58 , 61 and CONNECT 53 ). The systematic method of PtDA development recommended by IPDAS was implemented in the two CAD PtDA studies, 54 , 59 but only the CONNECT development study 54 cited a theory underpinning the methodology (i.e. Ottawa Decision Support Framework 65 ). Patients and/or healthcare professionals were involved in either providing feedback or user testing PtDAs across all development studies. 35 , 54 , 59 Methods included semi-structured interviews, 35 cognitive interviews, 54 video and teleconference calls, 35 , 54 focus groups, 54 , 59 and observations. 59 Participant demographics were only reported in the CONNECT PtDA study, which was the only study that assessed health literacy levels with 71% of participants scoring ‘adequate’ on the Brief Health Literacy Screen. 54
Three AS PtDAs 39 , 41 , 43 and seven PtDAs for chronic CAD 50 , 55 , 58 , 61 , 62 , 64 were evaluated across seven studies. 20 , 40 , 42 , 51 , 56 , 60 , 63 Sample size ranged from 12 to 203 participants. Most participants were White and had an advanced level of education (i.e. completed college). A variety of decision-making processes and decisional quality outcomes were assessed, including, patient satisfaction, treatment preference, patient-centred communication, involvement in SDM, decisional conflict, and knowledge level. Two 20 , 56 out of four studies that measured the SDM process (via the OPTION Scale 66 or Control Preferences Scale 67 ) showed a significant improvement after using a PtDA for AS (TAVI or symptom management/palliative care 43 ) and CAD (PCI, medical therapy, or CABG 55 ). High scores for patient satisfaction, patient-centred communication (measured using CollaboRATE 68 ), and the Preparation for Decision-making Scale 69 were reported after PtDA use for both AS and chronic CAD treatments. 20 , 40 , 42 , 63 Patients’ treatment preference, treatment delivered, or treatment concordance with patient preferences did not significantly change in any study. 42 , 51 , 56 Cardiologists in two studies felt that they already performed SDM consistently and that PtDAs were poorly understood by patients and negatively impacted on consultations. 20 , 60 Most patients preferred a DVD- or booklet-formatted PtDAs than web-based formats. 56 , 63
The 26-item SUNDAE checklist was used to evaluate the quality of reporting for all included studies, with results summarized in Table 3 (full evaluation in Supplementary material online , Table S12 ). Across the studies, between 50% and 89% (median 73%) of the SUNDAE criteria were completely fulfilled. Two of the three development studies either fully, or partially, satisfied all applicable SUNDAE. 54 , 59 No evaluation study achieved all 26 criteria. One criterion (Item 18) was only fully achieved by one study, 40 because the other six evaluation studies used a bespoke patient knowledge questionnaire, which had not undergone psychometric testing. Nine SUNDAE criteria were achieved by all studies. The criteria least consistently achieved were those related to the methods and results sections (e.g. ‘description of the development process’, ‘PtDA fidelity’, ‘process evaluation’, and ‘theories/models used to guide the study design and selection of evaluation measures’).
All six evaluation studies were assessed for inclusion in meta-analyses. Usable post-test data for patient knowledge and decisional conflict scores were obtained from four studies, with a total sample of 476 participants, 20 , 42 , 56 , 60 evaluating two PtDAs for AS 39 , 41 and three for chronic CAD. 55 , 58 , 61 Variation in the PtDAs and the patient groups across the four studies necessitated the use of standardized measures in the meta-analyses. Leave-one-out sensitivity analyses revealed no individual study to be exerting excessive influence on either meta-analysis (see Supplementary material online ).
Patient knowledge of treatment options was significantly greater in the PtDA groups compared with usual care in all four studies. 20 , 42 , 56 , 60 The meta-analysis determined that the synthesized estimate of the standardized mean difference in knowledge scores (PtDA—usual care) was 0.620 (95% CI 0.396–0.845), favouring the PtDA over usual care groups. A Z -test of the standardized mean effect indicated strong evidence at the 5% significance level for a non-zero effect ( Z = 5.42; P < 0.001). Cochran’s χ 2 test for heterogeneity indicated no evidence for statistical heterogeneity ( χ 2 (3) = 4.12; P = 0.248). The I 2 statistic was 27.3%, which may indicate low levels of heterogeneity. Data are summarized in Figure 2 .
Forest plot for the meta-analysis of patient knowledge scores.
Decisional conflict (measured by the validated SURE score 70 or Decisional Conflict Scale 71 ) was not significantly different between PtDA and usual care groups in all four studies. 20 , 42 , 56 , 60 However, the ‘informed’ subscale of the Decisional Conflict Scale score was significantly lower (i.e. favourable) in the PtDA groups compared with usual care. 56 , 60 The meta-analysis determined that the synthesized estimate of the standardized mean difference in decisional conflict (PtDA—usual care) was −0.159 (95% CI −0.339 to 0.022). A Z -test of the standardized mean effect revealed no evidence for a non-zero effect ( Z = −1.717; P = 0.086). Cochran’s χ 2 test for heterogeneity indicated no evidence for statistical heterogeneity (χ 2 (3) = 0.47; P = 0.925). The I 2 statistic was 0.00%, indicating that heterogeneity might not be important. Data are summarized in Figure 3 .
Forest plot for meta-analysis of decisional conflict scores.
The RoB2 tool 32 was used to evaluate potential bias in the two randomized controlled studies 42 , 60 with results indicating ‘some concerns’ ( Figure 4 ). The two non-randomized studies 20 , 56 were evaluated using the NHLBI Quality Assessment of Controlled Intervention Studies and were rated as ‘fair quality’, indicating susceptibility to ‘some bias’. 33
Risk of bias summary using the Cochrane RoB2 tool.
Patient decision aids are evidence-based tools known to be effective in improving the quality of SDM to help patients receive care that is ‘right’ for them. Patients who use PtDAs are more knowledgeable, informed, and involved, have more accurate risk perceptions, and are more confident in their treatment decision and clearer about their health goals and treatment preferences. 18 This benefits patients because those who are more active in making treatment decisions tend to have better health outcomes and are more satisfied with their care. 72 Within cardiology, many patients with AS and chronic CAD have unresolved decisional needs and require support when considering treatment with TAVI and planned PCI, respectively. 14–17 Patient decision aids offer a potential solution but cardiology teams’ lack of awareness of available high-quality PtDAs is a barrier to implementation. 21
To the best of our knowledge, this review makes a useful contribution to the research literature as the first study to systematically identify and evaluate the availability, characteristics, and quality of PtDAs used to support SDM for AS and chronic CAD. We also report on the effectiveness of TAVI PtDAs to improve decisional quality, which extends an existing meta-analysis on SDM in cardiology settings that did not include this common interventional procedure. 22 These findings, combined with our narrative summary of PtDA evaluation and development studies, provide a comprehensive international overview of AS and CAD PtDAs to inform cardiology practice.
Our findings on the availability of PtDAs ( Table 1 ) provide a valuable reference for cardiology teams and make an important contribution to the international literature. For the first time, internationally accepted quality criteria were used to evaluate the quality of AS and CAD PtDAs. We identified 21 PtDAs, but only one AS 41 and one CAD PtDA 49 were less than 5 years old and currently publicly available for patient distribution. However, only the AS PtDA was rated as high-quality having fulfilled all quality criteria. Given that SDM is recommended in clinical guidelines and health policy, 5 , 6 , 9 , 10 this lack of publicly available high-quality AS and CAD PtDAs is a significant finding that has not previously been reported. Overall, PtDAs scored poorly on criteria that address potentially harmful bias, which is consistent with reviews of cancer PtDAs. 23 This highlights that information concerning the uncertainty of treatment options, funding sources and updated policies, requires improvement. Doctors may be reluctant to discuss uncertainties around treatment outcomes, as they believe this will be viewed as incompetence 73 and will reduce patient trust and satisfaction with care. 74 Yet, from a patient perspective, higher levels of trust in cardiologists are associated with feeling listened to and involved in decisions about their health and treatments. 75 Having an open and honest dialogue is valued by heart disease patients. 76 Increasing cardiology teams’ awareness about patients’ communication preferences and additional SDM skills may improve this important element of SDM. 77
The PtDAs identified in this review had different designs, formats, and delivery approaches. There was a lack of consensus about the optimum characteristics for AS and CAD PtDAs. Potentially, this might be because patients’ and cardiology teams’ preferences varied; a view confirmed in this review. 54 , 56 , 63 A recent meta-analysis reported that the PtDA format (e.g. paper, computer, and web based) had no impact on effectiveness for improving SDM in cardiology settings. 22 Our results corroborate this finding; patient knowledge and some aspects of the SDM process (patient perception of SDM and integration of SDM in consultations) were significantly improved in two studies despite using PtDAs with different formats 20 , 56 : a printed one-page within-consultation ‘encounter PtDA’ for AS 43 and a web-based pre-consultation PtDA for CAD. 55 This suggests that a paper-based PtDA may be as effective as a more sophisticated digital version. However, additional research is required to corroborate this finding given the paucity of studies. We suggest that paper versions of PtDAs could be made routinely available, as a minimum, to support SDM for two reasons. First, 6–7% of adults in the USA 78 and the UK 79 have never used the internet. Second, it is recognized that the introduction of digital interventions can potentially widen health inequalities. 80
The overall quality of reporting, in both AS and CAD PtDA development and evaluation studies, was good, according to the recommended SUNDAE criteria. The aims, rationale, explanation of the PtDA and study methods, and implications for practice and research were comprehensively described in most studies. However, most studies did not measure PtDA fidelity or explore potential mechanisms for their effect on decision outcomes. The demographics of patients involved in the development and/or evaluation studies were either unknown, 35 , 59 under-reported, 40 , 51 or predominantly White, English-speaking people educated to high school level or higher. 20 , 42 , 54 , 56 , 60 , 63 Furthermore, readability levels were not reported in any PtDA, although the target reading age for two CAD PtDAs was reported as 13–14 years in associated publications. 54 , 56 These findings are significant because it is unclear how relevant and accessible existing AS and CAD PtDAs are for under-represented populations, which makes it challenging for cardiology teams to evaluate their appropriateness and usefulness within their clinical setting. Since patient–healthcare professional communication has the potential to reduce or increase health disparities, 81 it is important that the development and testing of PtDAs involve patients from diverse backgrounds.
Our meta-analyses found significantly improved levels of patient knowledge following the use of two AS PtDAs 39 , 41 and three CAD PtDAs, 55 , 58 , 61 compared with usual care. This finding is consistent with a recent meta-analysis of cardiology PtDAs. 22 However, our meta-analysis found no significant difference in decisional conflict between PtDA and usual care groups, in contrast to other reviews. 18 , 22 There are several potential explanations for this finding. The five PtDAs 41 , 43 , 55 , 58 , 61 evaluated may have limited function in eliciting preferences. Decisional conflict may have already been low in participants at baseline and/or in usual care groups 7 , 47 , 64 , 75 or the measure may have a ceiling effect. Another explanation relates to educational attainment. A large proportion of participants across the four studies had achieved a high-school education level or higher, which is known to be associated with lower decisional conflict. 82
Although not included in our meta-analysis due to heterogeneity of study designs, outcome measures indicating the quality of the decision-making process were significantly greater following the use of PtDAs across some 20 , 40 , 42 , 56 , 63 but not all studies, 51 , 60 and no negative outcomes were reported. The inconsistent findings might be explained by differences are study designs, outcomes, measurement instruments, and the PtDAs themselves. Given the wide variety of measures used to evaluate the quality of SDM, consensus on the most appropriate is recommended.
None of the PtDAs were evaluated in a large-scale randomized controlled trial that appeared to be sufficiently powered with a low risk of bias, possibly due to difficulties with recruitment and/or PtDA implementation. Several factors influence the successful implementation of PtDAs; a PtDA that is too complex or competes with existing practice is unlikely to be used. 77 Involvement and commitment from senior leadership and the clinical teams are an enabler to the use of PtDAs as is the engagement of the family and significant others. 77 Successful strategies to integrate PtDAs into clinical settings include training the entire cardiology team, linking PtDA outcomes with organizational priorities, proactively encouraging patients to engage with the PtDA, and reflecting on existing pathways to identify opportunities for PtDA use and SDM conversations. 77 The latter strategy could be particularly useful for elective PCI where the timing of PtDA delivery is challenging because diagnosis and treatment often occur together in the same procedure. 83 Providing PtDAs and seeking patients’ treatment preferences and goals earlier in the severe AS pathway should be considered. 13
We comprehensively and systematically searched multiple databases, trial registers, and 30 online sources to identify AS and CAD PtDAs and their development and evaluation studies. However, we may not have identified all eligible PtDAs and six were not available so an evaluation of their characteristics and quality was not possible. The wide range of measurement instruments used to evaluate the quality of SDM limited the number of meta-analyses conducted and made cross study comparisons challenging. Nevertheless, this review provides a high-quality international review of AS and CAD PtDAs.
A diverse range of AS and CAD PtDAs has been developed over the past 16 years, but few are up to date and currently available. To increase the transparency around PtDA quality and effectiveness, information about the uncertainty of treatment outcomes, funding sources and future updates should be added. The ‘voice’ of underserved populations and those with low health literacy levels is needed in the development or evaluation of PtDAs as to date, this has been lacking. Paper-based versions of digital PtDAs should be available to avoid widening health inequalities associated with the digital divide. We recommend that cardiology teams use the most up-to-date and highest-quality PtDAs available. We concluded that patients who use PtDAs when considering treatments for AS or chronic CAD are likely to be better informed than those who do not.
Supplementary material is available at European Journal of Cardiovascular Nursing online.
We would like to thank Professor Richard Thomson for his expert guidance and support in the development of this review. We send thanks to Ellie Price for conducting the initial search of clinical trial registers. We would also like to thank the authors who provided further details about their PtDA and research study.
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
E.H., F.A., and D.C.: conceptualization; E.H. and F.A.: methodology; E.H. and J.S.: formal analysis; E.H., F.A., A.B., D.C., A.-Y.C., and H.C.: investigation; E.H.: project administration; E.H., F.A., and J.S.: visualization; E.H., F.A., and J.S.: writing—original draft; and E.H., F.A., A.B., J.S., D.C., A.-Y.C., and H.C.: writing—review & editing.
The data underlying this review are available in the article and in its online supplementary material.
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Decision aids (DAs), compared to no DAs, help improve the key aspects of shared decision-making, including increased knowledge, discussion frequency, and reduction in decisional conflict. However, systematic reviews have reported varied conclusions on screening uptake, and which DAs are superior to alternative forms in shared decision-making for cancer screening has not been comprehensively reviewed.
An overview of systematic reviews was performed. Multiple databases were searched up to December 31, 2023, for systematic reviews of randomized controlled trials (RCTs) and non-randomized comparative studies (NRCSs) of any size that assessed a decision aid aimed to facilitate cancer-screening decision making communications. Dual screening of abstracts and full-text reports, dual data extraction and quality assessment, and qualitative synthesis were performed.
The 22 eligible publications included 24 reviews on cancer screening DAs for a single specific cancer (8, 8, 7, and 1 on prostate, breast, colorectal, and lung cancer, respectively) and three reviews on multiple aggregate cancers. Individual reviews were based on different primary study designs (92 RCTs and 37 NRCSs); each study was infrequently cited (median citation count 2; range 1–9). Although the DAs had variable formats and delivery methods, the reviews generally focused on use and non-use comparisons. DAs decreased the intention or actual uptake for prostate and breast cancer screening, but increased it for colorectal cancer screening. DAs were associated with increased knowledge, well-informed choice, and reduced decisional conflict, regardless of cancer type. Only four reviews on comparative effectiveness between alternative formats of DAs (based on 14 RCTs and 2 NRCSs) failed to conclude on the specific format that was superior to others.
DAs improve cancer screening shared decision-making by boosting cancer screening knowledge and informed choice and lowering decisional conflict and may facilitate preference-based, individualized screening participation. Comparative data on different cancer screening DAs are limited.
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Wilfully out of sight a literature review on the effectiveness of cancer-related decision aids and implementation strategies.
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All data generated or analyzed during this study are included in this published article and its supplementary information files.
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The English language editing was provided by Editage ( http://www.editage.com ). This assistance was funded by the Sciences Research Grants for Promotion of Cancer Control Programs by the Ministry of Health, Labor and Welfare, Japan (grant number 20EA1024).
This research was supported by the Sciences Research Grants for Promotion of Cancer Control Programs by the Ministry of Health, Labor and Welfare, Japan (grant number 20EA1024).
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Department of Emergency Medicine and General Internal Medicine, Fujita Health University School of Medicine, Toyoake, Aichi, Japan
Masaya Hibino MD, Miyuki Hirosue MS, Mitsunaga Iwata MD, PhD & Teruhiko Terasawa MD, PhD
Health Policy Section, Division of Nursing, Faculty of Medical Technology, Teikyo University, Tokyo, Japan
Chisato Hamashima MD, PhD
Section of General Internal Medicine, Department of Emergency Medicine and General Internal Medicine, Fujita Health University School of Medicine, Toyoake, Aichi, Japan
Teruhiko Terasawa MD, PhD
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All the authors cited in the manuscript made substantial contributions to the concept and design, the execution of the work, or the analysis and interpretation of data; and to drafting or revising the manuscript; and have read and approved the final version of the paper. All authors had access to the data. Masaya Hibino and Teruhiko Terasawa verified the dataset. All authors were responsible for making the decision to submit this manuscript.
Masaya Hibino: conceptualization, data curation, formal analysis, investigation, validation, and writing — review and editing.
Chisato Hamashima: conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, project administration, resources, supervision, validation, and writing — review and editing.
Miyuki Hirosue: conceptualization, data curation, formal analysis, investigation, and writing — review and editing.
Mitsunaga Iwata: conceptualization, formal analysis, supervision, and writing — review and editing.
Teruhiko Terasawa: conceptualization, data curation, formal analysis, investigation, methodology, project administration, resources, software, supervision, validation, visualization, writing — original draft, and writing — review and editing.
Correspondence to Teruhiko Terasawa MD, PhD .
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The study funders had no role in study design, data collection, data analysis, data interpretation, writing of the manuscript, or the decision to submit the manuscript for publication.
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This work was presented in part at the 82nd Annual Meeting of the Japanese Society of Public Health, held on October 31–November 2, 2023, in Tsukuba International Congress Center, Tsukuba, Japan.
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Hibino, M., Hamashima, C., Hirosue, M. et al. Comparative Effectiveness of Decision Aids for Cancer-Screening Decision Making: An Overview of Reviews. J GEN INTERN MED (2024). https://doi.org/10.1007/s11606-024-09001-4
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DOI : https://doi.org/10.1007/s11606-024-09001-4
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Objectives: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research.
Methods: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps.
Results: The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers' preferences for different types and amounts of information necessary to make decisions consistent with patients' values.
Conclusion: Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers' decision making. More diverse samples are needed.
Keywords: Alzheimer’s; Dementia; decision aids; end-of-life; family caregivers.
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Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Critical factors driving construction project performance in integrated 5d building information modeling.
2. materials and methods, 2.1. procedure for the systematic literature review, 2.2. search strategy, 2.3. tools and software, 2.4. data resources, 2.5. prisma flow for systematic review, 2.6. network analysis, 3.1. development trends for 5d bim in the construction industry, 3.1.1. publications per year, 3.1.2. major countries or regions undertaking research, 3.1.3. key productive authors, 3.1.4. keyword co-occurrence and cluster identification, 3.2. factors significantly affecting the adoption of 5d bim, 3.3. key project performance factors affected by the implementation of 5d bim, 4. discussion, 4.1. evolution of 5d bim in the construction industry, 4.1.1. citation bursts and trend evaluation, 4.1.2. cluster analysis, 4.2. critical factors influencing the implementation of 5d bim, 4.2.1. technology factors, 4.2.2. organizational factors, 4.2.3. environmental factors, 4.2.4. operator factors, 4.2.5. project factors, 4.2.6. government policy, 4.3. key performance indicators affected by the implementation of 5d bim, 4.3.1. project cost performance, 4.3.2. project time performance, 4.3.3. project quality performance, 5. limitations and future research directions, 6. conclusions, author contributions, data availability statement, conflicts of interest.
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No. | Questions |
---|---|
1 | How has 5D BIM evolved in the construction industry over the past decade? |
2 | Which factors significantly influence the adoption of 5D BIM in the construction industry? |
3 | In what ways does 5D BIM impact project performance indicators? |
Search string | (TITLE-ABS-KEY (“5D BIM”) OR TITLE-ABS-KEY (“BIM 5D”) OR TITLE-ABS-KEY (“5D Building Information Modeling”) OR TITLE-ABS-KEY (“the fifth dimension of BIM”) OR TITLE-ABS-KEY(“5 Dimensional Building Information Modeling”) OR TITLE-ABS-KEY(“Building Information Modeling 5D”) OR TITLE-ABS-KEY (“5D”) AND TITLE-ABS-KEY (“BIM”)) AND ((EXCLUDE (PUBYEAR, 2007) OR EXCLUDE (PUBYEAR, 2008) OR EXCLUDE (PUBYEAR, 2010) OR EXCLUDE (PUBYEAR, 2011) OR EXCLUDE (PUBYEAR, 2012) OR EXCLUDE (PUBYEAR, 2013) OR EXCLUDE (PUBYEAR, 2024)) |
No. | Eligibility for Inclusion |
---|---|
1 | Studies addressing the topic of 5D BIM or other synonyms |
2 | Studies published in the English language |
3 | Studies directly related to construction |
4 | Peer-reviewed publications (to ensure the inclusion of high-quality research) |
5 | Studies with a length of at least three pages |
6 | Articles with an explicit research title, abstract, and keywords |
Software/Tool | Function (s) | Reference |
---|---|---|
VOSviewer 1.6.20 | Visualization and analysis of SLR data | [ ] |
CiteSpace v.6.2.R6 (64-bit) Advanced | SLR cluster analysis/development path recording | [ ] |
Microsoft Excel | Gathering, preserving, and displaying data | [ ] |
Zotero 6.0.36 | Literature management | [ ] |
Author | Documents | Total Citations | Proportion |
---|---|---|---|
Hosseini, M. Reza | 6 | 285 | 2.70% |
Abrishami, Sepehr | 5 | 273 | 2.25% |
Elghaish, Faris | 5 | 224 | 2.25% |
Gaterell, Mark | 3 | 100 | 1.35% |
Li, Hua | 3 | 27 | 1.35% |
Brioso, Xavier | 3 | 13 | 1.35% |
Pan, Yangshao | 3 | 9 | 1.35% |
Guan, Changsheng | 3 | 2 | 1.35% |
Vitasek, Stanislav | 3 | 6 | 1.35% |
Factor Category | Sub-Categories | References |
---|---|---|
People/operational factors | Experts with training in operating tools | [ , , , , , , ] |
Awareness of the project’s scope | [ , , , ] | |
Prior experience partnering on 5D BIM projects | [ , ] | |
Willingness to use 5D BIM | [ , , , , ] | |
Collaboration concept among relevant stakeholders | [ , , , , , , ] | |
Technological factors | Capacity of technology infrastructure | [ , , , ] |
Conflicting implementation strategies of conventional approaches and 5D BIM | [ , , ] | |
Availability of IT support | [ , , ] | |
Compatibility with current industry standards | [ , ] | |
Compatibility between software | [ , , , ] | |
Organizational factors | Awareness of company | [ , , , , ] |
Rationalization of the organizational structure of construction projects | [ , ] | |
Constructability | [ , ] | |
Level of project data management | [ , ] | |
Costs related to BIM technology | [ , , , , , ] | |
Project-related factors | Provision of 3D modeling/design | [ , , , ] |
Provision of 4D modeling/schedule of constructionactivities | [ , ] | |
Difficulty in checking documents caused by conflict detection | [ , , ] | |
Incomplete/inaccurate data | [ , , , ] | |
Predictability of project outcomes | [ , , ] | |
Environmental factors | Market demand | [ , ] |
Increasing competition in the construction industry | [ , ] | |
Demand for sustainable urbanization | [ , , ] | |
Business situation | [ , ] | |
Cultural resistance preventing adoption | [ , , ] | |
Strategy/government policy | Standards and guidelines related to BIM | [ , , , , , , , , ] |
Contract standards for projects with BIM | [ , , , , ] | |
Dispute settlement mechanisms for projects with BIM | [ , , ] | |
Publicity and promotion for BIM | [ , , , ] | |
Protection for intellectual property rights related to 5D BIM | [ , , ] |
Factor Category | Sub-Category | References |
---|---|---|
Project cost performance | Cost estimation | [ , , , , , , , , , , , , , , , , , ] |
Cost control | [ , , , , , , , , , , , , , , ] | |
Cost budgeting | [ , , , , , , , , , , ] | |
Quantity takeoff | [ , , , , , , , ] | |
Claims | [ , , , ] | |
Project time performance | Enhanced decision making | [ , , , ] |
Scheduled variance analysis | [ , , , , , , ] | |
Shorter project times through coordination | [ , , ] | |
Time risk management | [ , , , , , , ] | |
Time-efficient construction delivery | [ , ] | |
Project quality performance | Sustainable development of the construction project | [ , ] |
Continuous improvement/process optimization | [ , , , ] | |
Quality of data documentation | [ , , , ] | |
Reductions in defects and quality errors | [ , ] | |
Satisfactory workplace environment | [ , , ] |
Category | KPIs | References |
---|---|---|
Project cost performance indicators | Cost performance | [ , ] |
Cost predictability | [ , ] | |
Project cost growth | [ ] | |
Change cost factor | [ , ] | |
Project budget factor | [ , ] | |
Project time performance indicators | Time predictability | [ , ] |
Schedule performance | [ , ] | |
Change in project schedule | [ , ] | |
Project quality performance indicators | Quality/high-quality performance | [ , ] |
Rework | [ , ] | |
Defects and quality errors | [ , ] |
The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
Sun, H.; Khoo, T.J.; Esa, M.; Mahdiyar, A.; Li, J. Critical Factors Driving Construction Project Performance in Integrated 5D Building Information Modeling. Buildings 2024 , 14 , 2807. https://doi.org/10.3390/buildings14092807
Sun H, Khoo TJ, Esa M, Mahdiyar A, Li J. Critical Factors Driving Construction Project Performance in Integrated 5D Building Information Modeling. Buildings . 2024; 14(9):2807. https://doi.org/10.3390/buildings14092807
Sun, Hui, Terh Jing Khoo, Muneera Esa, Amir Mahdiyar, and Jiguang Li. 2024. "Critical Factors Driving Construction Project Performance in Integrated 5D Building Information Modeling" Buildings 14, no. 9: 2807. https://doi.org/10.3390/buildings14092807
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1 School of Nursing, The University of Texas at Austin, Austin, TX, USA
2 School of Information, The University of Texas at Austin, Austin, TX, USA
Kenneth r fleischmann, jane dimmitt champion, kolina s koltai, objectives:.
To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research.
A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps.
The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers’ preferences for different types and amounts of information necessary to make decisions consistent with patients’ values.
Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers’ decision making. More diverse samples are needed.
Dementia, a collection of symptoms involving cognitive impairment severe enough to interfere with daily living, is a major public health issue worldwide. In the United States, as the number and proportion of older adults increase, the number of persons living with dementia is projected to increase from 5.4 million in 2016 to 13.8 million in 2050, with the greatest growth among those in advanced stage. 1 Dementia is the sixth leading cause of death in the United States, the only one for which there is currently no treatment or cure. 1
The very nature of dementia requires heavy family involvement, which can be stressful and challenging. 2 Negative consequences for caregivers’ own health and well-being have been well documented. 3 , 4 Even after placing a person with dementia in a care facility (e.g. nursing homes), the caregiver continues to be involved, supervising the care of the person with dementia at the facility and serving as a surrogate decision maker for important legal, financial, and healthcare decisions. 5 The ethical and emotional responsibilities of caregivers are great, especially when decisions involve end-of-life (EOL) care. Such decisions are often high-stake, value-laden, and complex (e.g. withdrawing artificial nutrition/hydration or antibiotics, or enrolling in hospice). 6 – 9
In response to the growing number of persons with dementia at EOL and the complexity of decision-making responsibilities of caregivers, researchers have begun to develop and test interventions that can support family caregivers’ decision making for persons with dementia. This is done primarily through the use of decision aids, which are structured tools designed to help patients and their families make specific, informed healthcare choices consistent with patients’ values. 10 Decision aids typically contain pertinent educational information about a patient’s condition or disease and about the advantages and disadvantages of treatment options; assessment tools that help individuals clarify their values by asking users to rate their perceptions of the benefits and disadvantages of different treatment or options; and advice about the decision-making process. 9 Formats of decision aids vary from video to print information to help decision makers consider how risk, uncertainty, and values may affect clinical and care choices. 7 Developed as an adjunct to, not in lieu of, consultation and counseling from healthcare providers, decision aids have been shown to improve knowledge, engagement in shared decision making, satisfaction with decisions, and compliance with treatment plans. 11 Decision aids are typically designed to be brief and simple to administer, thus addressing a major barrier to providers’ engagement with patients and their families in shared decision making—that is, time constraints.
To our knowledge, no literature review exists to systematically compare and summarize the characteristics of existing decision aids for caregivers of persons with advanced dementia. To address this gap in the literature, this literature review aims to systematically investigate existing knowledge in the literature about EOL decision making in family caregivers of persons with dementia, focusing on the types of decision aids available for family caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research (e.g. we intend to develop and test a mobile technology–based decision aid for caregivers). Our overarching research question (RQ) was. “What were the main characteristics of existing decision aids for family caregivers of persons with advanced dementia?” Under this overarching RQ, we had two specific RQs: How might existing decision aids have involved tailoring, specifically based on patients’ values and their caregivers’ information preferences? (RQa) And what types of technology were used in existing decision aids for family caregivers of persons with advanced dementia to obtain desired information (RQb)?
Following strategies used in earlier literature review studies, 12 – 14 we performed three rounds of systematic selection in the PubMed database: (a) keyword search in Titles/Abstracts and MeSH terms, (b) screening of titles and abstracts, and (c) screening of full-text articles. The searches were performed on 5 February 2018.
We used the following four sets of keywords to search the Title/Abstract field in PubMed: (“dementia” OR “Alzheimer’s”) AND (“decision aid*”) AND (“caregiver*” OR “proxy” OR “proxies” OR “surrogate*”) AND (“end of life” OR “advanced dementia”). We used the following PubMed filters: (1) Text availability: Full text, (2) Publication dates: 10 years, and (3) Species: Humans. This process produced a total of seven articles. Next, we searched in MeSH terms in PubMed, using the same search terms mentioned above (except for “surrogate*,” which was not a MeSH term) and with the same three built-in filters (full text available, published in the past 10 years, and humans). A total of three results were found. Combining the results from these two searches yielded a total of 10 non-duplicate results.
In addition to PubMed, we also searched in two other databases on the same day: CINAHL Plus with Full Text and PsycINFO. We used the same four sets of keywords that we used for PubMed to search in the Abstract field of these two additional databases. We also added the following built-in filters (“Limiters”) when searching in these two additional databases: Full Text, References Available, English Language, Peer Reviewed, Research Article, Human, and Journal Article. Our searches found no additional results than we had already found in PubMed. Thus, the 10 results found during this round were used in the subsequent rounds of screening.
Author B.X. manually screened the titles and abstracts of the 10 articles to ensure they covered all four key aspects that guided our first round of searches, with the following further criteria predetermined by authors B.X., J.K., and K.R.F.:
After these criteria were applied, five articles remained. The full text of the remaining five articles was examined and confirmed that they all met the criteria. This final sample comprised empirical studies published over the last 10 years that focused on decision aids for the EOL decision making of family caregivers of persons with advanced dementia. The selection process is illustrated in Figure 1 .
Systematic selection process.
We reviewed the full text of the final five articles and coded them by two independent coders (B.X. and A.S.B.) using a coding sheet predetermined by authors B.X., J.K., and K.R.F. based on prior work. 12 – 14 Discrepancies between the two independent coders’ coding were minimal. After all five articles were coded, key information from each article was summarized.
Key characteristics of the studies in our final sample are summarized in Table 1 .
Summary of the studies in the final sample.
Reference | Purpose/aims | Sample | Research design | Intervention; technology used | Key findings |
---|---|---|---|---|---|
Einterz et al. | To explore the feasibility of a decision aid intervention for caregivers and to generate preliminary evidence on the intervention’s effect on quality of communication and decision making | = 18 pairs of persons with (moderate to severe) dementia and their caregivers | Pre-/posttest; no control | Each caregiver viewed the decision aid video and participated in a structured care plan meeting with an interdisciplinary team Technology used: video | The intervention was feasible and relevant for the target population; it improved caregivers’ knowledge, quality of communication, and particularly quality of communication at EOL with providers |
Hanson et al. | To describe the protocols of a decision aid intervention, challenges, and strategies for recruitment and retention, and approaches to ensuring research ethics | = 256 dyads of persons with advanced dementia and their caregivers | Cluster randomized controlled trial | Caregivers reviewed information (in print or audio) about dementia, feeding options in advanced dementia. Controls received usual care Technology used: audio narration with words on a computer screen for participants with impaired vision or limited literacy | The research team used multiple strategies to recruit and retain sites and participants; successfully enrolled 256 dyads, and 99% of them completed the 3-month study period; recognizing persons with advanced dementia as a vulnerable population is important for ensuring research ethics |
Hanson et al. | To test the efficacy of a decision aid (the same one introduced in Hanson et al. 2010) in improving the quality of decision making about feeding options in advanced dementia | = 256 dyads of persons with advanced dementia and their caregivers | Cluster randomized controlled trial | Same as reported in Hanson et al. | Improved knowledge among caregivers in the intervention group (16.8 vs 15.1, < .001); after 3 months, caregivers in the intervention group had lower Decisional Conflict Scale scores than did those in the control group (1.65 vs 1.90, < .001) and had more discussions about feeding options with a healthcare provider (46% vs 33%, = .04). Persons with advanced dementia in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, = .04). No statistically significant difference in tube feeding between the intervention and control groups |
Hanson et al. | To describe strategies used to monitor and promote the fidelity of a decision aid intervention | = 151 dyads of persons with dementia and their caregivers | Cluster randomized controlled trial | Intervention group received (1) a 20-min video decision aid about care choices in advanced dementia, and (2) a structured nursing home care plan meeting to address goals of care. Three goals were covered: prolonging life, supporting function, and improving comfort; Control: viewed a 20-min informational video about dementia and participated in usual care plan meetings with staff Technology used: video | Intervention fidelity strategies used in the study enabled providers to implement a decision aid intervention for caregivers of persons with advanced dementia |
Snyder et al. | Aim 1: To describe caregivers’ perceptions of feeding options for their relatives with advanced dementia living in skilled nursing facilities; Aim 2: To explore how a decision aid might change caregivers’ knowledge about feeding options, expectations of tube feeding benefits, decisional conflict, and preferred feeding method | Aim 1: = 255; Aim 2: = 126 (only caregivers in the intervention group were studied for Aim 2) | Aim 1: semi-structured interviews with open-ended questions; Aim 2: pre-/posttest; no control | A decision aid (in audio, visual, and print formats) provided caregivers in the intervention group with information about dementia, feeding problems, pros and cons of feeding options, and surrogates’ role in decision-making Audio-visual technology | From pre- to posttest, participants in the intervention group showed improved knowledge (15.5 vs 16.8; < .001), decreased expectation of tube feeding benefits (2.73 vs 2.32; = .001), and decreased decisional conflict (2.24 vs 1.91; < .001). Their preference for assisted oral feeding did not change, but certainty about their choice improved (1.35 vs 1.05; = .016), suggesting the efficacy of using this decision aid in improving caregiver decision making about feeding options in the care for advanced dementia patients |
EOL: end-of-life.
The studies’ samples varied widely, from 36 to 512. All interventions consisted of predominately Caucasian participants. Two of the interventions in our final sample did not have control groups; 7 , 17 the others did. 2 , 15 , 16 All interventions used audiovisual technology—intervention materials delivered in an audio/video format in addition to a conventional print format. No other technology was used in any of the interventions. The interventions focused on factors affecting typical EOL decision-making processes and outcomes (especially feeding-related), that is, knowledge about feeding options, communication skills, decisional conflicts, and decisions about treatment.
The interventions all involved delivering educational materials to family caregivers, although differences existed in how those materials were delivered. Some of the interventions featured providing participants with the same generic materials to review on their own with no other intervention elements. 2 , 15 , 17 Other interventions 7 , 16 involved participants reviewing the materials individually, followed by a structured care plan meeting with the staff, with the latter presumably enabling opportunities to provide information tailored to caregivers’ unique circumstances. Notably though, none of the interventions specifically acknowledged the need for tailoring of information to the needs of caregivers or patients in different situations.
The studies in this review involved several different instruments to measure a range of concepts, most commonly knowledge, communication skills, decisional conflict, comfort with knowledge, confidence with treatment, and satisfaction with care. Many of these instruments were developed specifically for these interventions and require further psychometric testing in different populations and contexts. The studies that focused on the efficacy of their interventions 2 , 17 reported their interventions were effective in at least one of their outcome measures, that is, improved knowledge, quality of communication, or decreased decisional conflict. One intervention found statistically significant difference in tube feeding between the intervention and control groups. 2
It should be noted that the reviewed articles provided insufficient information about the interventions, making it difficult to extract interventions’ details and make comparisons across the studies. The description of an intervention could be as simple as one sentence, for example: 17 “Intervention: For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions” (p. 114).
The small number of interventions in our final sample suggests that decision aids supporting EOL decision making by caregivers of persons with dementia is currently understudied and in need of extensive research. Our ability to make comparisons between studies was limited because of the differing methods employed and different types of decision aids examined. An added challenge is that insufficient information was provided in the publications with regard to various specifics about the decision aids. Future studies should report details of the interventions such as the amount of information provided (e.g., number of pages of print materials, minutes of audio/video provided, approximate time required to review the information) and the intervention’s delivery mode (e.g. group size or individual information review, presence or absence of tailored in-person guidance).
Feeding tube-related issues faced by caregivers of people with advanced dementia were the primary focus of decision aids identified in this review of empirical studies. 5 , 7 As the condition of the person with dementia deteriorates, decisions involve more emotionally laden issues such as advance care planning or resuscitation orders. 6 , 18 Such decisions are difficult, because they require the caregiver to exercise substituted judgment or follow best interest standards to make decisions on behalf of the person with dementia; yet, it is often difficult to know what the wishes of a person with dementia are or what the best course of treatments are, given the uncertain, protracted nature of dementia’s progression. 6 , 18 , 19
The interventional studies in our sample generally concluded that their decision aids helped caregivers with their decision making. However, a major limitation of existing decision aids is that they typically do not take into account caregivers’ preferences for different types and amounts of information that are necessary to ensure decision making consistent with patients’ values. The decision aids in these studies were typically limited by a one-directional approach: the types and amounts of information provided were predetermined by researchers/providers, instead of tailored to the information preferences of individual caregivers. Subsequently, caregivers might not receive the right types and/or amounts of information necessary for making decisions consistent with patients’ values. This lack of focus on values and preferences may reflect an assumption in the current medical model that patients have well-formed EOL care preferences consistent with their values and that caregivers can ascertain what those preferences are, or that caregivers are fully informed of how different care decisions may, or may not, support their loved ones’ values and EOL preferences. However, such an assumption frequently fails to reflect reality. Patients and their spouses can differ significantly in EOL care preferences, with patients more likely to prefer additional treatment than their spouses. 20 This is consistent with findings from earlier research showing low to modest congruence between patients and caregivers. 21 When potential caregivers were asked in scenarios to predict patients’ preferences, accuracy was highest when patients’ current health status was considered and lowest in scenarios of stroke and dementia; caregivers reported that EOL discussions failed to occur for a number of reasons, but mostly because of family belief structures and personalities. 22
In a study that compared hypothetical EOL decision-making vignettes between relatives and professionals acting as patient surrogates, researchers found that situational variables such as the patient’s current behavior and the views of healthcare professionals and family members had higher impacts on decisions than did the patient’s prior statements or life attitudes. 8 Other researchers who have looked at EOL decision-making scenarios with healthy older adults have found other factors that influence caregivers’ decision making, such as caregivers’ own current state of health, health literacy, and communication with healthcare providers. 8 , 22 – 24 Even when patients’ care preferences are known to caregivers, they might still not be implemented, due to factors such as attempting to achieve family consensus. 25 Evidence from 228 community-dwelling family care dyads showed that 25% of cargivers underestimated the importance of everyday care values of persons with dementia, suggesting incongruence between patients’ and caregivers’ values. 26 If and how these factors affect caregiver decision making deserves further examination and implementation in decision aids.
Despite advances in information and communication technology, none of the decision aids in our sample involved any kind of technology beyond audio/video as a part of an intervention. Existing decision aids are typically delivered to caregivers in print (typically a hardcopy workbook), sometimes coupled with in-person discussions with trained providers in a group or individually. The printed materials’ content varied; topics included information about advanced dementia, the role of the surrogate decision maker, EOL care options and their pros and cons, common community services available, and pointers toward further information. Presented in a static print or audio/video format, such rich information can be overwhelming, and some of it may even be irrelevant to individuals with unique values, preferences, or other circumstances. Tailoring interventions to meet the needs of particular groups is critical, and such interactive information can best be delivered using more advanced technology such as a website or mobile app that would allow for interactive use beyond the scope of a particular class discussion setting. Doing so is important because caregivers are likely to think of additional questions while engaging in the everyday process of caring for persons with dementia. Unfortunately, none of the studies reviewed employed such advanced technology in their interventions.
For technology to be useful in decision aids for caregivers of persons with dementia, an important point to note is that caregivers (e.g. spouses of persons with dementia) may be of older ages themselves and/or facing other challenges (e.g. limited literacy). As such, it is critical that any technology used in a decision aid is easy to use for caregivers with limited technology experience and skills. Age-appropriate training and technical support will be necessary as well. Furthermore, integrating technology in decision aids is not to completely replace human interactions, as interactions with healthcare professionals can be instrumental to the caregiver’s decision-making process and outcomes.
A major topic commonly addressed in the literature was advance care planning for persons with dementia. Caregivers in various sample populations had taken on this responsibility with little or no knowledge of the values and desires of their relatives regarding EOL care and management. Decision aids have been designed to encourage caregivers to prepare advance directives and/or discuss possible treatment limitations with healthcare providers. Advance care plans are themselves a type of decision aid because they educate and prepare caregivers for the progression that they can expect as their relatives decline toward the end of life. 6 , 7 In an ideal situation, the demands of an advance directive or any kind of advance care planning would be discussed with the family member while the person is still able to express his or her wishes about EOL care. Decisional conflict was greater with caregivers who were struggling to make sense of their relatives’ wishes, and the literature showed that decision aids did help in these situations. 5 – 7
An important aspect of advance care planning that requires greater acceptance is the use of do not hospitalize (DNH) orders: 27 barriers to these orders included a “perceived lack of physician involvement in decision-making and limited understanding of DNH orders and the resident’s prognosis” (p. 1568). Meanwhile, evidence also exists that advance directives (specifically, euthanasia directives in the Netherlands) were hardly ever actually adhered to by physicians and family members after they had been completed, 18 although such a phenomenon may have limited generalizability given its specific context.
Feeding is one of the most contentious areas of decision making for persons with dementia. Decision aids typically included content designed to help caregivers understand the issues surrounding feeding, percutaneous endoscopic gastronomy tube insertion, and alternative treatments. Controlled observational studies show that tube feeding does not improve survival, aspiration, or wound healing; however, this information is not routinely shared with decision makers, and families and professionals alike may have unrealistically high expectations for benefits from tube feeding. 2 The decision aids in this literature review frequently involved improving caregiver knowledge about problems with tube feeding, separating the desire to support and “nourish” the person with dementia from the physical need to feed someone mechanically who has a limited life expectancy. 2 , 5 , 7 However, the decision aids did not assess caregivers’ preferences for different types and amounts of information beforehand and presented little opportunity to include them in the decision-making process.
Related to tube feeding is the question of treatment for infections. Treatment with antibiotics frequently brings its own set of complications, including gastrointestinal upset and other side effects. Also, transferring a person with dementia can worsen disorientation because it places the person in an unfamiliar environment. In a study that examined caregivers’ involvement in decisions about whether or not to treat minor infections in persons with dementia and how aggressively to do so, the researchers found that caregivers participated only about half of the time. 5 Studies of family members’ perceptions of the EOL decision-making process and outcomes suggest important opportunities for the improvement of decision making in EOL care. 28
Using racially/ethnically homogeneous samples—that consisted of predominately Caucasian participants—was a major limitation in studies in this review. Decision making is culturally sensitive, and more diverse samples would enhance our knowledge in this area. In addition, ethnically and racially diverse samples may well point out a need for more flexible, customizable decision aids. For instance, prior evidence suggests that African Americans were less likely than Caucasian Americans to have advance care plans, and implementing programs in the community was effective in enhancing success because participants felt comfortable discussing sensitive topics in environments they could trust. 6 A study of Hong Kong Chinese family caregivers found that reliance on collective family decisions significantly affected choices of caregivers and that filial piety and possible confrontation from relatives, combined with a lack of knowledge about life-sustaining treatments, worsened decision-making stresses. 29 Compared with Caucasian elders and their caregivers, non-Caucasians and individuals with greater financial difficulty had stronger preferences for life-prolonging treatment. 23
People from ethnic minority groups may prefer different EOL treatments and are, due to disparities and differences in values and beliefs, less likely to have advance directives (e.g. members of specific ethnic groups may have strong cultural taboos against open and direct discussion about death and dying 30 , 31 ). The experiences of ethnic minority caregivers differ as well (e.g. higher levels of depression and stress among Hispanic caregivers than among non-Hispanic Caucasians 32 ). Caregivers and patients in rural areas also face unique challenges: they tend to be older, in worse health, with greater financial burden and limited access to providers and support services, experiencing stigma of dementia and a lack of privacy. 33 – 38 The coping styles of caregivers of persons with dementia in rural areas are often different from those in urban areas, suggesting unique needs. 38 The significant health disparities and characteristics among caregivers who are members of racial/ethnic minority groups and/or live in rural areas call for effective interventions tailored to their unique needs and circumstances.
This literature review has limitations. We searched in only three databases with specific inclusion/exclusion criteria. While these criteria were necessary for our specific purposes (i.e. preparing for a larger intervention study involving using interactive technology to provide tailored decision aids for caregivers of persons with advanced dementia), using these criteria led to only five relevant articles in our final sample. One possible reason is that we used search terms common to the US context, which might not necessarily be common terms used in other national contexts. Subsequently, our study is geared more toward the US context. Also, our searches focused on decision aids, for the purpose of comparing and analyzing what has been done and what has not with existing decision aid interventions. It was beyond the scope of this current literature review to examine the literature on broader issues related to decision making.
This literature review has identified several issues that call for attention. Few decision aids exist for caregivers’ EOL decision making for persons with dementia. Existing studies lacked a focus on caregivers’ preferences for different types and amounts of information necessary to ensure decision making consistent with patients’ values. Advance care planning for persons with dementia is a major challenge for caregivers. Ideally, the demands of an advance directive or any kind of advance care planning would have been discussed with the person with dementia while he or she was still able to express such wishes. Yet, this is often not the case. Developers of decision aids should strive to find ways to incorporate values and preferences in decision making. None of the studies mentioned any tailoring or acknowledged the need for specific tailoring of information to the individual situations of patients or caregivers. Important variables for tailoring such as values and information preferences were typically not assessed before or during the implementation of decision aids. While recent technological developments enable great tailoring of information, existing decision aids have largely underutilized such tailoring potential. Future research should investigate whether/how we could take full advantage of recent technological developments in the design and implementation of future decision aids (that are easy to use by caregivers with limited technology literacy). Finally, existing studies involved samples predominantly of non-Hispanic Caucasians. Since EOL decision making is culturally sensitive, future research should place special emphasis on ethnically and racially diverse samples and develop tailored and interactive decision aids for underrepresented groups.
This work was part of a Pilot Research Grant from the Population Health Initiative at the University of Texas at Austin, entitled Values and Preferences in Dementia Family Caregivers’ End-of-Life Decision-Making ; Principal Investigator (PI): Bo Xie; Co-PIs: Ken Fleischmann and Jung Kwak.
Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was part of a Pilot Research Grant from the Population Health Initiative at the University of Texas at Austin, entitled Values and Preferences in Dementia Family Caregivers’ End-of-Life Decision-Making ; Principal Investigator (PI): Bo Xie; Co-PIs: Ken Fleischmann and Jung Kwak.
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Whereas decision aids such as decision support systems (DSS) can be beneficial in stressful scenarios, decision makers sometimes misuse them during decision making, leading to suboptimal outcomes. ... Stressed decision makers and use of decision aids: A literature review and conceptual model. Information Technology & People, 33(2), 710-754 ...
Previous versions of the International Patient Decision Aid Standards (IPDAS) began to map this diversity, with the 2013 update offering a model process based on the authors' review of the literature. Since that last update, there has been increasing recognition of the importance of engaging the users of decision aids in their development.
Limitations of traditional decision aids. For the past two decades enthusiasts have advocated decision aids to facilitate shared decision making, and over 500 have been developed.15 16 A systematic review of 115 randomised trials showed that their use was associated with a 13% absolute increase in patients' knowledge scores and an 82% relative increase in accurate expectations of possible ...
The Cochrane Review of Patient Decision Aids: This Cochrane review, initiated in 2003, plays a pivotal role in summarizing the existing evidence on the impact of these tools. It is the most referenced review in the Cochrane collection (over 8400 citations). In their 2024 update, Dr. Logan Trenaman and the Cochrane team identified 104 new ...
There has been a steady increase in the development and evaluation of PDAs over the last 15 years (O'Connor et al., 1999; Stacey et al., 2014).Patients given decision aids in the studies took a more active role in making the decision and had improved knowledge, more realistic expectations of the benefits and side-effects of their options, lower decisional conflict, and were more likely to ...
Literature search. We reviewed all studies included in the Cochrane review entitled "Decision aids for people facing health treatment or screening decisions" published in April 2017 (literature search conducted on 24 April 2015). 4 The Cochrane review captured trials of decision aids for people facing health treatment or screening decisions. The majority of studies in the Cochrane review ...
To review the literature and provide a summary of best practices for the design, implementation, and assessment of decision aids. Methods. ... Interestingly, in their review, decision aids had a variable effect on consultation length, from shorter to longer durations, so perhaps confronting the perception of time consumption would be important ...
Shared decision making (SDM) and patient-centered care require patients to actively participate in the decision-making process. Yet with the increasing number and complexity of cancer treatment options, it can be a challenge for patients to evaluate clinical information and make risk-benefit trade-offs to choose the most appropriate treatment. Clinicians face time constraints and ...
To provide further details about design and development methods (objective 1), we summarized findings from the extensive systematic review of literature published up to June 2017 by Vaisson et al. 3 To describe the application of user-centered design during the development of decision aids (objective 2), we conducted a focused review of patient ...
The purpose of this paper is to investigate the relationship between stress, decision making and decision aid use.,The authors conduct an extensive multi-disciplinary review of decision making and DSS use through the lens of stress and examine how stress, as perceived by decision makers, impacts their use or misuse of DSS even when such aids ...
Physician-Patient Relations*. Shared decision making (SDM) is a process within a patient centred consultation that involves both the patient and doctor discussing management options and agreeing on management decisions in partnership. Decision aids are designed to help patients understand the options relating to management for c ….
Decision aids for patients have recently been introduced in health care. A literature review was conducted to address the following research questions: 1) which types of decision aids have been developed?; 2) to what extent are they feasible, and acceptable to patients and health care providers?; 3) …
Decision aids are one type of tool that can be used to support the process of shared decision making between patients and their health professionals, a key element of person-centred care and health system improvements. A major update to the landmark Cochrane review on decision aids has just been published with an analysis of 209 studies ...
- Patient decision aids are pamphlets or videos used in person or online. They clearly identify the healthcare decision to be made, provide information on options (benefits and harms), and help people clarify what is most important to them. Decision aids are designed to enhance and supplement consultation with the clinician, not replace it.
Decision-aids are reported to increase knowledge, reduce decisional conflict, cause greater satisfaction with decision-making, support more realistic expectations, achieve a greater likelihood of ...
The evolution and rationale behind SDM and the evidence relating to outcomes, the types of decision aids available, and research relating to their use are discussed. Shared decision making (SDM) is a process within a patient centred consultation that involves both the patient and doctor discussing management options and agreeing on management decisions in partnership.
Request PDF | Stressed decision makers and use of decision aids: a literature review and conceptual model | Purpose Decision making is inherently stressful since the decision maker must choose ...
Nogués X, Carbonell MC, Canals L, Lizán L, Palacios S. Current situation of shared decision making in osteoporosis: A comprehensive literature review of patient decision aids and decision drivers. Health Sci Rep 2022; 5 :e849. 10.1002/hsr2.849 [ CrossRef ] [ Google Scholar ]
The aim of this systematic review is to investigate the causes and effects of decision fatigue from the existing literature that can be generalized across different organizational domains. A comprehensive literature search in three databases identified 589 articles on decision fatigue.
To address this gap in the literature, this literature review aims to systematically investigate existing knowledge in the literature about EOL decision making in family caregivers of persons with dementia, focusing on the types of decision aids available for family caregivers of persons with advanced dementia, and to identify gaps in the ...
For other testing and screening choices, mostly there were no differences between decision aids and usual care. The median effect of decision aids on length of consultation was 2.6 minutes longer (24 versus 21; 7.5% increase). The costs of the decision aid group were lower in two studies and similar to usual care in four studies.
Patient decision aids in this review improved patient knowledge, but decisional conflict scores were unchanged, possibly due to a ceiling effect. ... Literature 40: A decision aid for treatment options for severe aortic stenosis for patients deciding between TAVI and surgery 41: TAVI. SAVR. American College of Cardiology:
The median numbers of primary studies and participants assessed in a review were 10 (range, 2-35) and 4328 (range, 518-12,781), respectively (Table 1 and Appendix Table 1).RCTs dominated most of the included studies: 16 of 27 (59%) reviews included RCTs only (5/8 [63%], 5/8 [63%], and 4/7 [57%] reviews focused on prostate, breast, and colorectal cancer screening decision aids, respectively ...
Objectives: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research. Methods: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and ...
This review summarizes the main scores, including MADIT trial-based Risk Stratification Score (MRSS) and Seattle Heart Failure Model (SHFM), which are based on randomized trials with a control group (HF medication only) and validated on large cohorts of 'real-world' HF patients. ... but could aid decision regarding prophylactic ICD in ...
This study presents a detailed case analysis of a 40-year-old male patient with hemophilia A and severe chronic elbow arthropathy, exploring the surgical challenges and outcomes within the context of the current literature. The patient, with a history of multiple comorbidities including Hodgkin's lymphoma and cardiomyopathy, exhibited significant joint damage and functional impairment. A ...
To our knowledge, no literature review exists to system-atically compare and summarize the characteristics of exist-ing decision aids for caregivers of persons with advanced dementia. To address this gap in the literature, this literature review aims to systematically investigate existing knowl-
Purchasing and procurement managers should make informed decisions in selecting materials at the right time, in sufficient quantities, and at affordable prices. Supplier selection and order allocation (SSOA) is a vital aspect of purchasing and procurement processes. In this research, the techniques and decision-making methods used in SSOA from peer-reviewed journals published from 2021 to 2023 ...
A thorough systematic literature review and qualitative analysis were conducted to achieve this goal. Relevant articles from the past decade (2014-2023) were examined from the Scopus and Web of Science databases, of which 222 were selected and screened using PRISMA procedures. ... and can aid them in making informed decisions .
This literature review has identified several issues that call for attention. Few decision aids exist for caregivers' EOL decision making for persons with dementia. Existing studies lacked a focus on caregivers' preferences for different types and amounts of information necessary to ensure decision making consistent with patients' values.