Is quality of life a suitable measure of patient decision aid effectiveness? Sub-analysis of a Cochrane systematic review

Rutherford, Claudia; King, Madeleine; Butow, Phyllis; Lyddiatt, Anne; Souli, Intissar; Rincones, Orlando; Stacey, Dawn

doi:10.1007/s11136-018-2045-7

Cited by 12 publications

(13 citation statements)

References 31 publications

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“…Of the 11 trials, 6 trials neither reported difference in health-related quality of life between PtDA and control nor over time. This confirmed the lack of impact, suggesting that health-related quality of life may be an uninformative end point unless a specific hypothesis for its impact can be made [ 46 ]. Another potential reason for this is that the outcome is too distant from the act of using MyDiabetesPlan : patients may select a goal (such as increasing physical activity) but may not enact the goal (ie, actually increasing their physical activity ), and thus may not experience any change in health-related quality of life.…”

Section: Discussionmentioning

confidence: 65%

“…Authors have postulated that this may be owing to the fact that decision aids are often used in situations where the options have no clear health outcome advantage [ 45 ]. A subanalysis of this review identified 11 studies involving 2684 patients that examined the impact of PtDA on health-related quality of life [ 46 ]. Of the 11 trials, 6 trials neither reported difference in health-related quality of life between PtDA and control nor over time.…”

Section: Discussionmentioning

confidence: 99%

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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

Yu¹,

Choi²,

Bruno³

et al. 2020

J Med Internet Res

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Background Person-centered care is critical for delivering high-quality diabetes care. Shared decision making (SDM) is central to person-centered care, and in diabetes care, it can improve decision quality, patient knowledge, and patient risk perception. Delivery of person-centered care can be facilitated with the use of patient decision aids (PtDAs). We developed MyDiabetesPlan, an interactive SDM and goal-setting PtDA designed to help individualize care priorities and support an interprofessional approach to SDM. Objective This study aims to assess the impact of MyDiabetesPlan on decisional conflict, diabetes distress, health-related quality of life, and patient assessment of chronic illness care at the individual patient level. Methods A two-step, parallel, 10-site cluster randomized controlled trial (first step: provider-directed implementation only; second step: both provider- and patient-directed implementation 6 months later) was conducted. Participants were adults 18 years and older with diabetes and 2 other comorbidities at 10 family health teams (FHTs) in Southwestern Ontario. FHTs were randomly assigned to MyDiabetesPlan (n=5) or control (n=5) through a computer-generated algorithm. MyDiabetesPlan was integrated into intervention practices, and clinicians (first step) followed by patients (second step) were trained on its use. Control participants received static generic Diabetes Canada resources. Patients were not blinded. Participants completed validated questionnaires at baseline, 6 months, and 12 months. The primary outcome at the individual patient level was decisional conflict; secondary outcomes were diabetes distress, health-related quality of life, chronic illness care, and clinician intention to practice interprofessional SDM. Multilevel hierarchical regression models were used. Results At the end of the study, the intervention group (5 clusters, n=111) had a modest reduction in total decisional conflicts compared with the control group (5 clusters, n=102; −3.5, 95% CI −7.4 to 0.42). Although there was no difference in diabetes distress or health-related quality of life, there was an increase in patient assessment of chronic illness care (0.7, 95% CI 0.4 to 1.0). Conclusions Use of goal-setting decision aids modestly improved decision quality and chronic illness care but not quality of life. Our findings may be due to a gap between goal setting and attainment, suggesting a role for optimizing patient engagement and behavioral support. The next steps include clarifying the mechanisms by which decision aids impact outcomes and revising MyDiabetesPlan and its delivery. Trial Registration ClinicalTrials.gov NCT02379078; https://clinicaltrials.gov/ct2/show/NCT02379078

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Section: Discussionmentioning

confidence: 65%

Section: Discussionmentioning

confidence: 99%

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

Yu¹,

Choi²,

Bruno³

et al. 2020

J Med Internet Res

Self Cite

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“…Furthermore, the impact of SDM on clinical outcomes remains undetermined, whereas researchers have also emphasized the measurement of patient-centered outcomes. A variety of outcome assessments have been proposed for the evaluation of SDM processes [30][31][32][33]; therefore, the evaluation of this system can be further improved by establishing the measurements proposed by the experts and researchers. Last, this was a single center study.…”

Section: Discussionmentioning

confidence: 99%

Improving the Process of Shared Decision-Making by Integrating Online Structured Information and Self-Assessment Tools

Hsu

Kuo

et al. 2022

JPM

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The integration of face-to-face communication and online processes to provide access to information and self-assessment tools may improve shared decision-making (SDM) processes. We aimed to assess the effectiveness of implementing an online SDM process with topics and content developed through a participatory design approach. We analyzed the triggered and completed SDM cases with responses from participants at a medical center in Taiwan. Data were retrieved from the Research Electronic Data Capture (REDCap) database of the hospital for analysis. Each team developed web-based patient decision aids (PDA) with empirical evidence in a multi-digitized manner, allowing patients to scan QR codes on a leaflet using their mobile phones and then read the PDA content online. From July 2019 to December 2020, 48 web-based SDM topics were implemented in the 24 clinical departments of this hospital. The results showed that using the REDCap system improved SDM efficiency and quality. Implementing an online SDM process integrated with face-to-face communication enhanced the practice and effectiveness of SDM, possibly through the flexibility of accessing information, self-assessment, and feedback evaluation.

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“…It is rare in evaluation of healthcare interventions that QoL is the targeted outcome; HRQoL is the more relevant outcome. 57 Hence, when measuring QoL in pediatric multiple sclerosis, the correct distinction should be made.…”

Section: Discussionmentioning

confidence: 99%

Quality of life measures in pediatric multiple sclerosis: a systematic review and meta‐analysis

Mozafarinia

Mayo

2021

Develop Med Child Neuro

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Aim To identify generic measures used to measure quality of life (QoL) in pediatric multiple sclerosis research, estimate an overall score of children and adolescents with pediatric multiple sclerosis, and compare the scores to scores of typically developing children and adolescents. Method A systematic search was conducted on four databases. All studies were included if: the sample was children with pediatric demyelinating disorders; self‐reported QoL/health‐related quality of life (HRQoL) measures or results were reported; and the mean age of the sample was below 21 years. Quality of the included articles was appraised using the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist and the Mixed Methods Appraisal Tool checklist. A meta‐analysis was also conducted. Results A total of 12 full‐text articles were included. Content analysis showed that many components of QoL were not included in the measures. Seven studies were included in the meta‐analysis. The meta‐analyzed score was 75.7 (95% confidence interval 71.2–80.3) with a pooled standard deviation of 16.6. Scores of typically developing children and children with pediatric multiple sclerosis were similar. Interpretation Most measures assessed HRQoL and not QoL. Development of a condition‐specific measure of QoL for children and adolescents with pediatric multiple sclerosis would make an important contribution to the field. Health‐related quality of life (HRQoL) measures were used to measure quality of life in pediatric multiple sclerosis. HRQoL scores in pediatric multiple sclerosis were similar to typically developing children and adolescents.

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Is quality of life a suitable measure of patient decision aid effectiveness? Sub-analysis of a Cochrane systematic review

Cited by 12 publications

References 31 publications

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

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

Improving the Process of Shared Decision-Making by Integrating Online Structured Information and Self-Assessment Tools

Quality of life measures in pediatric multiple sclerosis: a systematic review and meta‐analysis

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