Why real world outcome information is indispensable in making treatment decisions for multiple myeloma.

OBJECTIVE: A next step in value-based healthcare (VBHC) is to use outcome information (OI) to inform patients about (personalized) outcomes of care in order to support decision-making processes. We aimed to explore multiple myeloma (MM) patients' and caregivers' views on communication of OI and (shared) decision-making (SDM). METHODS: Focus groups with MM patients and caregivers. Main topics were experiences and needs with information provision, communication, decision-making, and use of OI. Focus groups were audiotaped, transcribed verbatim and analyzed in an iterative process by two researchers using open coding. Member checks were performed. RESULTS: Two focus groups were held with 11 patients (91% male, M=71 years old) and 10 caregivers (89% partners). Information needs were different per moment in the disease trajectory and purpose. Patients were implicitly involved in decisions, but they were not always aware of options and no active weighing of values took place. Outcome information was mostly provided on an individual level, to monitor disease progression and initiate decisions about the need for changes in ongoing treatment regimens (follow-up treatment lines). Patients appreciated the current process of information provision and decision-making, but prefer more option awareness, a bigger role in decision-making and more OI to 1) weigh outcomes for decision-making; 2) get insight in their care trajectory; and 3) compare with other patients. CONCLUSIONS: Participants were satisfied with information provision and decision-making, but they were only implicitly involved in decisions. Real world OI derived from VBHC improvement cycles for MM may fulfil MM patients' and caregivers' information needs and support treatment decision-making.

Practitioners' perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study.

OBJECTIVES: In oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients' involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners' perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia. DESIGN: Mixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners. SETTING: Two academic medical training centres for primary and long-term care in the Netherlands. PARTICIPANTS: Practitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians. OUTCOMES: The main survey outcome was acceptability measured with a 15-75 acceptability scale with ≥45 meaning 'acceptable'. RESULTS: The survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation. CONCLUSION: Acceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.

Improving a Web-Based Tool to Support Older Adults to Stay Independent at Home: Qualitative Study.

BACKGROUND: Older adults desire to stay independent at home for as long as possible. We developed an interactive website to inform older adults and caregivers about ways to achieve this. OBJECTIVE: This study aimed to perform an in-depth exploration among potential end users about how to improve the interactive website to better inform older adults and caregivers about ways to stay independent at home. METHODS: To complement the results of a quantitative survey on the usability and acceptability of the website before implementation, we conducted a qualitative descriptive study. Using multiple recruitment strategies, we recruited a purposeful sample of older adults (aged ≥65 years) and caregivers of older adults struggling to stay independent at home. We conducted face-to-face or telephonic interviews in either English or French. In addition, we collected sociodemographic characteristics, other characteristics of participants (eg, health, digital profile, and perception of retirement homes), and experiences with using the website (factors facilitating the use of the website, barriers to its use, and suggestions for improvement). Interviews were audio recorded, transcribed verbatim, and thematically analyzed by two researchers. RESULTS: We recruited 15 participants, including 5 older adults (mean age 75 years, SD 6) and 10 caregivers (mean age 57 years, SD 14). The mean interview time was 32 min (SD 14). Most older adults had either mobility or health problems or both, and many of them were receiving home care services (eg, blood pressure measurement and body care). Overall, participants found the website easy to navigate using a computer, reassuring, and useful for obtaining information. Barriers were related to navigation (eg, difficult to navigate with a cellphone), relevance (eg, no specific section for caregivers), realism (eg, some resources presented are not state funded), understandability (eg, the actors' accents were difficult to understand), and accessibility (eg, not adapted for low digital literacy). Suggestions for improvement included a needs assessment section to direct users to the support appropriate to their needs, addition of information about moving into residential care, a section for caregivers, distinction between state-provided and private support services, simpler language, expansion of content to be relevant to all of Canada, and video subtitles for the hearing impaired. CONCLUSIONS: Users provided a wealth of information about the needs of older adults who were facing a loss of autonomy and about what such a website could usefully provide. The request for less generic and more personalized information reflects the wide range of needs that electronic health innovations, such as our interactive website, need to address. After integrating the changes suggested, the new website-Support for Older Adults to Stay Independent at Home (SUSTAIN)-will be implemented and made available to better assist older adults and caregivers in staying independent at home.

The pitfalls of scaling up evidence-based interventions in health.

Policy-makers worldwide are increasingly interested in scaling up evidence-based interventions (EBIs) to larger populations, and implementation scientists are developing frameworks and methodologies for achieving this. But scaling-up does not always produce the desired results. Why not? We aimed to enhance awareness of the various pitfalls to be anticipated when planning scale-up. In lower- and middle-income countries (LMICs), the scale-up of health programs to prevent or respond to outbreaks of communicable diseases has been occurring for many decades. In high-income countries, there is new interest in the scaling up of interventions that address communicable and non-communicable diseases alike. We scanned the literature worldwide on problems encountered when implementing scale-up plans revealed a number of potential pitfalls that we discuss in this paper. We identified and discussed the following six major pitfalls of scaling-up EBIs: 1) the cost-effectiveness estimation pitfall, i.e. accurate cost-effectiveness estimates about real-world implementation are almost impossible, making predictions of economies of scale unreliable; 2) the health inequities pitfall, i.e. some people will necessarily be left out and therefore not benefit from the scaled-up EBIs; 3) the scaled-up harm pitfall, i.e. the harms as well as the benefits may be amplified by the scaling-up; 4) the ethical pitfall, i.e. informed consent may be a challenge on a grander scale; 5) the top-down pitfall, i.e. the needs, preferences and culture of end-users may be forgotten when scale-up is directed from above; and 6) the contextual pitfall, i.e. it may not be possible to adapt the EBIs to every context. If its pitfalls are addressed head on, scaling-up may be a powerful process for translating research data into practical improvements in healthcare in both LMICs and high-income countries, ensuring that more people benefit from EBIs.

Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective.

BACKGROUND: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved. OBJECTIVE: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making. RESEARCH DESIGN AND METHODS: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers. RESULTS: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time. DISCUSSION: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences. IMPLICATIONS: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.

Factors associated with shared decision making among primary care physicians: Findings from a multicentre cross-sectional study.

BACKGROUND: Despite growing recognition that shared decision making (SDM) is central for patient-centred primary care, adoption by physicians remains limited in routine practice. OBJECTIVE: To examine the characteristics of physicians, patients and consultations associated with primary care physicians' SDM behaviours during routine care. METHODS: A multicentre cross-sectional survey study was conducted with 114 unique patient-physician dyads recruited from 17 primary care clinics in Quebec and Ontario, Canada. Physicians' SDM behaviours were assessed with the 12-item OPTION scale scored by third observers using audio-recordings of consultations. Independent variables included 21 physician, patient and consultation characteristics. We assessed factors associated with OPTION scores using multivariate linear regression models. RESULTS: On the OPTION scale, where higher scores indicated greater SDM behaviours, physicians earned an overall mean score of 25.7±9.8 of 100. In the final adjusted regression model, higher OPTION scores were associated with physicians' social participation (involvement in one committee ß=5.75, P=.04; involvement in two or more committees ß=7.74, P=.01), patients' status as employed (ß=6.48, P=.02), clinically significant decisional conflict in patients (ß=7.15, P=.002) and a longer duration of consultations (ß=0.23, P=.002). CONCLUSION: Physicians' social participation, patients' employment status and decisional conflict and the duration of consultations were associated with primary care physicians' SDM behaviours in routine care. These factors should be considered when designing strategies to implement SDM and promote more patient-centred care in primary care.

Deciding How to Stay Independent at Home in Later Years: Development and Acceptability Testing of an Informative Web-Based Module.

BACKGROUND: Seniors with loss of autonomy may face decisions about whether they should stay at home or move elsewhere. Most seniors would prefer to stay home and be independent for as long as possible, but most are unaware of options that would make this possible. OBJECTIVE: The study aimed to develop and test the acceptability of an interactive website for seniors, their caregivers, and health professionals with short interlinked videos presenting information about options for staying independent at home. METHODS: The approach for design and data collection varied, involving a multipronged, user-centered design of the development process, qualitative interviews, and end-user feedback to determine content (ie, needs assessment) in phase I; module development (in English and French) in phase II; and survey to test usability and acceptability with end users in phase III. Phase I participants were a convenience sample of end users, that is, seniors, caregivers, and professionals with expertise in modifiable factors (eg, day centers, home redesign, equipment, community activities, and finances), enabling seniors to stay independent at home for longer in Quebec and Alberta, Canada. Phase II participants were bilingual actors; phase III participants included phase I participants and new participants recruited through snowballing. Qualitative interviews were thematically analyzed in phase II to determine relevant topics for the video-scripts, which were user-checked by interview participants. In phase III, the results of a usability questionnaire were analyzed using descriptive statistics. RESULTS: In phase I, interviews with 29 stakeholders, including 4 seniors, 3 caregivers, and 22 professionals, showed a need for a one-stop information resource about options for staying independent at home. They raised issues relating to 6 categories: cognitive autonomy, psychological or mental well-being, functional autonomy, social autonomy, financial autonomy, and people involved. A script was developed and evaluated by participants. In phase II, after 4 days in a studio with 15 bilingual actors, 30 videos were made of various experts (eg, family doctor, home care nurse, and social worker) presenting options and guidance for the decision-making process. These were integrated into an interactive website, which included a comments tool for visitors to add information. In phase III (n=21), 8 seniors (7 women, mean age 75 years), 7 caregivers, and 6 professionals evaluated the acceptability of the module and suggested improvements. Clarity of the videos scored 3.6 out of 4, length was considered right by 17 (separate videos) and 13 participants (all videos together), and 18 participants considered the module acceptable. They suggested that information should be tailored more, and that seniors may need someone to help navigate it. CONCLUSIONS: Our interactive website with interlinked videos presenting information about options for staying independent at home was deemed acceptable and potentially helpful by a diverse group of stakeholders.

Shared decision making in West Africa: The forgotten area.

Up to now, little attention has been paid to West Africa when it comes to shared decision making (SDM). West African countries seem to lag behind with regard to SDM initiatives compared to many other countries in the world. There is some interest in informed decision making or informed consent, but little in a full SDM process. Few decision-making tools are available for healthcare professionals and the majority are not designed to support decision-making with patients. Furthermore, to the best of our knowledge, there are no training programs for implementing SDM in healthcare teams. Many barriers exist to implementing SDM in West Africa, including lack of options, few or poor health resources and low levels of education. However, African countries present many opportunities for SDM as well. Existing SDM innovations developed for other populations with low literacy could be explored and adapted to the West African context, and research on implementation and outcomes in West Africa could contribute to SDM worldwide. West African countries are in an excellent position to both learn from other countries and contribute to SDM development in other parts of the world. In this paper we reflect on SDM challenges and opportunities, and propose a research agenda for West Africa. We hope to awaken interest in SDM in West Africa and encourage future collaborations on SDM with various West African stakeholders, including patients, healthcare professionals, policymakers, non-government organisations (NGOs) and academic institutions.

Impact of home care versus alternative locations of care on elder health outcomes: an overview of systematic reviews.

BACKGROUND: Many elders struggle with the decision to remain at home or to move to an alternative location of care. A person's location of care can influence health and wellbeing. Healthcare organizations and policy makers are increasingly challenged to better support elders' dwelling and health care needs. A summary of the evidence that examines home care compared to other care locations can inform decision making. We surveyed and summarized the evidence evaluating the impact of home care versus alternative locations of care on elder health outcomes. METHODS: We conducted an overview of systematic reviews. Data sources included MEDLINE, the Cochrane Library, EMBASE, and CINAHL. Eligible reviews included adults 65+ years, elder home care, alternative care locations, and elder health outcomes. Two independent reviewers screened citations. We extracted data and appraised review quality using the Assessing the Methodological Quality of Systematic Reviews (AMSTAR) checklist. Results were synthesized narratively. RESULTS: The search yielded 2575 citations, of which 19 systematic reviews were eligible. Three hundred and forty studies with 271,660 participants were synthesized across the systematic reviews. The categories of comparisons included: home with support versus independent living at home (n = 11 reviews), home care versus institutional care (n = 3 reviews), and rehabilitation at home versus conventional rehabilitation services (n = 7 reviews). Two reviews had data relevant to two categories. Most reviews favoured home with support to independent living at home. Findings comparing home care to institutional care were mixed. Most reviews found no differences in health outcomes between rehabilitation at home versus conventional rehabilitation services. Systematic review quality was moderate, with a median AMSTAR score of 6 (range 4 - 10 out of 11). CONCLUSIONS: The evidence on the impact of home care compared to alternative care locations on elder health outcomes is heterogeneous. Our findings support positive health impacts of home support interventions for community dwelling elders compared to independent living at home. There is insufficient evidence to determine the impact of alternative care locations on elders' health. Additional research targeting housing and care options for the elderly is needed.