Impact of MyDiabetesPlan, a Web-Based Patient Decision Aid on Decisional Conflict, Diabetes Distress, Quality of Life, and Chronic Illness Care in Patients With Diabetes: Cluster Randomized Controlled Trial (Preprint)

Yu, Catherine; Choi, Dorothy; Bruno, Brigida A.; Thorpe, Kevin E.; Straus, Sharon E.; Cantarutti, Paul; Chu, Karen; Frydrych, Paul; Hoang‐Kim, Amy; Ivers, Noah; Kaplan, David; Leung, Fok-Han; Maxted, John; Rezmovitz, Jeremy; Sale, Joanna; Sodhi, Sumeet; Stacey, Dawn; Telner, Deanna

doi:10.2196/preprints.16984

Cited by 3 publications

(1 citation statement)

References 34 publications

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“…Findings from this review suggest interventions that include a goal or need setting component with either a nurse (Dobke et al, 2008) or decision navigator (McBride et al, 2016) ahead of clinical consultations should assist the transfer and exchange of knowledge between patient and clinician, and lower short term decisional conflict. This finding is similar to other studies in non-wound care populations that identified goal setting decision aids reduced decisional conflicts (Yu et al, 2020). However, findings evaluating a wide range of shared decision making interventions on decisional conflict compared to usual care indicated there was little or no difference between control and intervention groups (Légaré et al, 2018).…”

supporting

confidence: 87%

Effectiveness of interventions to enhance shared decision‐making in wound care: A systematic review

Clemett,

Graham,

Woodward

et al. 2024

Journal of Clinical Nursing

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AimsTo explore the effectiveness of interventions to enhance patient participation in shared decision‐making in wound care and tissue viability.BackgroundCaring for people living with a wound is complex due to interaction between wound healing, symptoms, psychological wellbeing and treatment effectiveness. To respond to this complexity, there has been recent emphasis on the importance of delivering patient centred wound care and shared decision‐making to personalise health care. However, little is known about the effectiveness of existing interventions to support shared decision‐making in wound care.DesignSystematic review of interventional studies to enhance shared decision‐making in wound care or tissue viability. This was reported following the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis (PRISMA) guidelines 2020.MethodsInterventional primary research studies published in English up to January 2023 were included. Screening, data extraction and quality appraisal were undertaken independently by two authors.Data SourcesMedline, EMBASE, Cochrane Central Register of Controlled Trails (trials database), CINAHL, British Nursing Index (BNI), WorldCat (thesis database), Scopus and registries of ongoing studies (ISRCTN registry and clinicaltrials.gov).Results1063 abstracts were screened, and eight full‐text studies included. Findings indicate, interventions to support shared decision‐making are positively received. Goal or need setting components may assist knowledge transfer between patient and clinician, and could lower short term decisional conflict. However, generally findings within this study had very low certainty due to the inconsistencies in outcomes reported, and the variation and complexity of single and multiple interventions used.ConclusionsFuture research on shared decision‐making interventions in wound care should include the involvement of stakeholders and programme theory to underpin the interventions developed to consider the complexity of interventions.Implications for the profession and patient carePatients setting out their needs or goals and exploring patient questions are important and should be considered in clinical care.RegistrationThe review protocol was prospectively registered (PROSPERO database: CRD42023389820).No Patient or Public ContributionNot applicable as this is a systematic review.

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supporting

confidence: 87%

Effectiveness of interventions to enhance shared decision‐making in wound care: A systematic review

Clemett,

Graham,

Woodward

et al. 2024

Journal of Clinical Nursing

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Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid

Shojaie¹,

Hoffman²,

Amaku³

et al. 2021

JMIR Form Res

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Background In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers have expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families to discuss these decisions. To ensure that these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ decision-making needs and optimal design strategies for a web-based patient decision aid. Objective Following the international guidelines for the development of a web-based patient decision aid, the objectives of this study are to engage potential users to guide development; review the existing literature and available tools; assess users’ decision-making experiences, needs, and design recommendations; and identify shared decision-making approaches to address each need. Methods This study used the decisional needs assessment approach, which included creating a stakeholder advisory panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified current decision-making pathways, unmet decision-making needs, and decision support strategies for meeting each need. Results The stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included 2 systematic reviews, 9 additional papers, and multiple educational websites, but none of these met the criteria for a patient decision aid. Patients and family members (n=54) emphasized the need for plain language (46/54, 85%), shared decision making (45/54, 83%), and help with family discussions (39/54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n=10) reported needing interventions that address misinformation (9/10, 90%), foster realistic expectations (9/10, 90%), and address mistrust in clinical trials (5/10, 50%). Additional needs included provider tools that support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored to (64/64, 100%) and delivered on a hospital website (53/64, 83%), focuses on quality of life (45/64, 70%), and provides step-by-step guidance (43/64, 67%). The study team identified best practices to meet each need, which are presented in the proposed decision support design guide. Conclusions Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids that provide tailored support over time and explicitly address uncertainty, quality of life, realistic expectations, and effects on families are needed.

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Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid (Preprint)

Shojaie¹,

Hoffman²,

Amaku³

et al. 2021

Preprint

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BACKGROUND In cancers with a chronic phase, patients and family caregivers may face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families for discussing these decisions. To ensure these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ primary decision-making needs and optimal design strategies for a web-based patient decision aid. OBJECTIVE Following international guidelines for development of a web-based patient decision aid, the objectives of this study were to: 1) engage potential users to guide development; 2) review the existing literature and available tools; 3) assess users’ decision-making experiences, needs, and design recommendations; and 4) identify shared decision-making approaches to address each need. METHODS This study used the Decisional Needs Assessment approach, including creating a Stakeholder Advisory Panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified the current decision-making pathways, unmet decision-making needs, and decision support strategies to meet each need. RESULTS Stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included two systematic reviews, 9 additional papers, and multiple educational websites, but nothing that met the criteria of a patient decision aid. Patients and family members emphasized needing plain language (46 of 54, 85%), shared decision making (45 of 54, 83%), and help with family discussions (39 of 54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n = 10) reported needing interventions that address misinformation (9 of 10, 90%), foster realistic expectations (9 of 10, 90%), and address mistrust in clinical trials (5 of 10, 50%). Additional needs included provider tools to support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored (64 of 64, 100%) and delivered on a hospital website (53 of 64, 83%), and that focuses on quality of life (45 of 64, 70%) and provides step-by-step guidance (43 of 64, 67%). The study team identified best practices to meet each need, which are presented in the proposed Decision Support Design Guide. CONCLUSIONS Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids are needed that provide tailored support over time, and explicitly address uncertainty, quality of life, realistic expectations, and effects on families.

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Impact of MyDiabetesPlan, a Web-Based Patient Decision Aid on Decisional Conflict, Diabetes Distress, Quality of Life, and Chronic Illness Care in Patients With Diabetes: Cluster Randomized Controlled Trial (Preprint)

Cited by 3 publications

References 34 publications

Effectiveness of interventions to enhance shared decision‐making in wound care: A systematic review

Effectiveness of interventions to enhance shared decision‐making in wound care: A systematic review

Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid

Decision Making When Cancer Becomes Chronic: Needs Assessment for a Web-Based Medullary Thyroid Carcinoma Patient Decision Aid (Preprint)

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