Quality of patient decision aids to support the public making COVID-19 decisions: An online environmental scan.

OBJECTIVE: To identify and appraise the quality of COVID-19 patient decision aids (PtDAs). METHODS: We conducted an environmental scan of online publicly available COVID-19 PtDAs. Two reviewers independently searched and extracted data. We calculated median International Patient Decision Aid Standards (IPDAS) scores and proportion scoring > 70% on Patient Education Materials Information Tool (PEMAT) adequate for understandability and actionability. RESULTS: Of 876 resources identified, 12 were PtDAs. Decisions focused on initial COVID-19 vaccination series (n = 9), location of care for elderly (n = 2), and social distancing (n = 1). All 12 PtDAs were written materials and two had accompanying videos. The median IPDAS score minimizing risk of biased decisions was 4 of 6 items (IQR 1, range 2-4). For PEMAT, 92% had adequate for understandability and none for actionability. CONCLUSIONS: We identified few online publicly available COVID-19 PtDAs and none were about COVID-19 vaccination boosters or treatment. PtDAs scored poorly on actionability and none met all IPDAS criteria for minimizing risk of biased decisions. PRACTICE IMPLICATIONS: PtDA developers for COVID-19 and future pandemics should ensure their PtDAs meet all IPDAS criteria for minimizing risk of bias, have adequate scores for actionability, and are disseminated in the A to Z inventory.

Decisions and Decisional Needs of Canadians From all Provinces and Territories During the COVID-19 Pandemic: Population-Based Cross-sectional Surveys.

BACKGROUND: Never before COVID-19 had Canadians faced making health-related decisions in a context of significant uncertainty. However, little is known about which type of decisions and the types of difficulties that they faced. OBJECTIVE: We sought to identify the health-related decisions and decisional needs of Canadians. METHODS: Our study was codesigned by researchers and knowledge users (eg, patients, clinicians). Informed by the CHERRIES (the Checklist for Reporting Results of Internet E-Surveys) reporting guideline, we conducted 2 online surveys of random samples drawn from the Leger consumer panel of 400,000 Canadians. Eligible participants were adults (≥18 years) who received or were receiving any health services in the past 12 months for themselves (adults) or for their child (parent) or senior with cognitive impairment (caregiver). We assessed decisions and decisional needs using questions informed by the Ottawa Decision Support Framework, including decisional conflict and decision regret using the Decision Conflict Scale (DCS) and the Decision Regret Scale (DRS), respectively. Descriptive statistics were conducted for adults who had decided for themselves or on behalf of someone else. Significant decisional conflict (SDC) was defined as a total DCS score of >37.5 out of 100, and significant decision regret was defined as a total DRS score of >25 out of 100. RESULTS: From May 18 to June 4, 2021, 14,459 adults and 6542 parents/caregivers were invited to participate. The invitation view rate was 15.5% (2236/14,459) and 28.3% (1850/6542); participation rate, 69.3% (1549/2236) and 28.7% (531/1850); and completion rate, 97.3% (1507/1549) and 95.1% (505/531), respectively. The survey was completed by 1454 (97.3%) adults and 438 (95.1%) parents/caregivers in English (1598/1892, 84.5%) or French (294/1892, 15.5%). Respondents from all 10 Canadian provinces and the northern territories represented a range of ages, education levels, civil statuses, ethnicities, and annual household income. Of 1892 respondents, 541 (28.6%) self-identified as members of marginalized groups. The most frequent decisions were (adults vs parents/caregivers) as follows: COVID-19 vaccination (490/1454, 33.7%, vs 87/438, 19.9%), managing a health condition (253/1454, 17.4%, vs 47/438, 10.7%), other COVID-19 decisions (158/1454, 10.9%, vs 85/438, 19.4%), mental health care (128/1454, 8.8%, vs 27/438, 6.2%), and medication treatments (115/1454, 7.9%, vs 23/438, 5.3%). Caregivers also reported decisions about moving family members to/from nursing or retirement homes (48/438, 11.0%). Adults (323/1454, 22.2%) and parents/caregivers (95/438, 21.7%) had SDC. Factors making decisions difficult were worrying about choosing the wrong option (557/1454, 38.3%, vs 184/438, 42.0%), worrying about getting COVID-19 (506/1454, 34.8%, vs 173/438, 39.5%), public health restrictions (427/1454, 29.4%, vs 158/438, 36.1%), information overload (300/1454, 20.6%, vs 77/438, 17.6%), difficulty separating misinformation from scientific evidence (297/1454, 20.4%, vs 77/438, 17.6%), and difficulty discussing decisions with clinicians (224/1454, 15.4%, vs 51/438, 11.6%). For 1318 (90.6%) adults and 366 (83.6%) parents/caregivers who had decided, 353 (26.8%) and 125 (34.2%) had significant decision regret, respectively. In addition, 1028 (50%) respondents made their decision alone without considering the opinions of clinicians. CONCLUSIONS: During COVID-19, Canadians who responded to the survey faced several new health-related decisions. Many reported unmet decision-making needs, resulting in SDC and decision regret. Interventions can be designed to address their decisional needs and support patients facing new health-related decisions.

Predictors of Decision Regret among Caregivers of Older Canadians Receiving Home Care: A Cross-Sectional Online Survey.

Background. In Canada, caregivers of older adults receiving home care face difficult decisions that may lead to decision regret. We assessed difficult decisions and decision regret among caregivers of older adults receiving home care services and factors associated with decision regret. Methods. From March 13 to 30, 2020, at the outbreak of the COVID-19 pandemic, we conducted an online survey with caregivers of older adults receiving home care in the 10 Canadian provinces. We distributed a self-administered questionnaire through Canada's largest and most representative private online panel. We identified types of difficult health-related decisions faced in the past year and their frequency and evaluated decision regret using the Decision Regret Scale (DRS), scored from 0 to 100. We performed descriptive statistics as well as bivariable and multivariable linear regression to identify factors predicting decision regret. Results. Among 932 participants, the mean age was 42.2 y (SD = 15.6 y), and 58.4% were male. The most frequently reported difficult decisions were regarding housing and safety (75.1%). The mean DRS score was 28.8/100 (SD = 8.6). Factors associated with less decision regret included higher caregiver age, involvement of other family members in the decision-making process, wanting to receive information about the options, and considering organizations interested in the decision topic and health care professionals as trustworthy sources of information (all P < 0.001). Factors associated with more decision regret included mismatch between the caregiver's preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care (all P < 0.001). Discussion. Decisions about housing and safety were the difficult decisions most frequently encountered by caregivers of older adults in this survey. Our results will inform future decision support interventions. Highlights: This is one of the first studies to assess decision regret among caregivers of older adults receiving home and community care services and to identify their most frequent difficult decisions.Difficult decisions were most frequently about housing and safety. Most caregivers of older adults in all 10 provinces of Canada experienced decision regret.Factors associated with less decision regret included higher caregiver age, the involvement of other family members in the decision-making process, wanting to receive information about the options, considering organizations interested in the decision topic, and health care professionals as trustworthy sources of information. Factors associated with more decision regret included mismatch between the caregiver's preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care.

Shared decision-making in Canada: Update on integration of evidence in health decisions and patient-centred care government mandates.

In Canada, government mandates for patient-centred care (PCC) vary across the 10 provinces and three territories. Although basic medical and hospital services are provided for all, health care options for patients also depend on having private insurance. Thus, the current design of the Canadian healthcare system has several implications for PCC and shared decision-making (SDM). Since 2007, this is our fourth update on SDM in Canada. The aim of this paper is to provide an update on the current state of SDM and patient and public involvement in Canada. Overall, we still observed the difficulty of implementing any sort of national strategy partly because of the decentralized nature of the healthcare system. Second, national professional education programs are complicated by licensure and scope of practice variations across jurisdictions. Third, there are variations in the availability of different options covered by universal healthcare. Canada has experienced some favorable development as PCC is now explicitly articulated in the policies of most provinces and territories and there are increased efforts to give patients more access to their electronic health records. However, patient and public engagement (PPE) reform in health programs and governance remains an exception, and continuing centralization of governance structures may reduce their responsiveness to patient priorities. In a 2018 survey, 47.2% of respondents reported that they were not told by their health professional that they had a choice about treatment. Nonetheless, decision aids and decision coaching are increasingly available for health-related decisions and the Ottawa Hospital Research Institute's decision aid inventory has ensured continued leadership in this area. Diverse jurisdictions are starting to embed decision aids into care pathways, with some decision aids being included in clinical practice guidelines. The COVID-19 pandemic may have had a negative impact on SDM by removing decision choices due to emergency public health mandates, but stimulated new research and decision aids. Canada continues to assign health research funding to SDM and PCC, and a program dedicated to patient-oriented research is central to this effort. Guides and frameworks are increasingly available for planning and evaluating PPE. Finally, various initiatives are attempting to involve and empower Indigenous peoples through PPE and SDM.

Feasibility of Rapidly Developing and Widely Disseminating Patient Decision Aids to Respond to Urgent Decisional Needs due to the COVID-19 Pandemic.

To meet urgent decisional needs of retirement/nursing home residents and their families, our interdisciplinary stakeholder team rapidly developed and disseminated patient decision aids (PtDAs) regarding leaving one's residence during the COVID-19 pandemic. The development steps were as follows: identify urgent decisional needs, develop PtDAs using the Ottawa Decision Support Framework template and minimal International PtDA Standards, obtain stakeholder feedback, broadly disseminate, and incorporate user feedback. Within 2 wk, we developed 2 PtDAs for retirement and nursing home living environments that were informed by decisional needs (identified from public responses to related media reports), current pandemic regulations/guidance, and recent systematic reviews. Within 3 wk of their dissemination (websites, international PtDA inventory, Twitter, Facebook, media interviews), the PtDAs were downloaded 10,000 times, and user feedback was positive. Our expert team showed feasible rapid development and wide dissemination of PtDAs to respond to urgent decisional needs. Development efficiencies included access to a well-tested theory-based PtDA template, recent evidence syntheses, and values-based public responses to media reports. Future research includes methods for rapidly collecting user feedback, facilitating implementation, and measuring use and outcomes.