The Canadian Frailty Priority Setting Partnership: Research Priorities for Older Adults Living with Frailty.

BACKGROUND: Patient engagement in research priority-setting is intended to democratize research and increase impact. The objectives of the Canadian Frailty Priority Setting Partnership (PSP) were to engage people with lived or clinical experience of frailty, and produce a list of research priorities related to care, support, and treatment of older adults living with frailty.
METHODS: The Canadian Frailty PSP was supported by the Canadian Frailty Network, coordinated by researchers in Toronto, Ontario and followed the methods of the James Lind Alliance, which included establishing a Steering Group, inviting partner organizations, gathering questions related to care, support and treatment of older adults living with frailty, processing the data and prioritizing the questions.
RESULTS: In the initial survey, 799 submissions were provided by 389 individuals and groups. The 647 questions that were within scope were categorized, merged, and summarized, then checked against research evidence, creating a list of 41 unanswered questions. Prioritization took place in two stages: first, 146 individuals and groups participated in survey and their responses short-listed 22 questions; and second, an in-person workshop was held on September 26, 2017 in Toronto, Ontario where these 22 questions were discussed and ranked.
CONCLUSION: Researchers and research funders can use these results to inform their agendas for research on frailty. Strategies are needed for involving those with lived experience of frailty in research.

INTRODUCTION

Frailty is a state of increased vulnerability to adverse outcomes.( It increases with age and is associated with consequences at the individual and societal level.( While frailty has emerged as an important health and care concept among researchers and clinicians working with older adults, there is still debate about the best operational definition and evidence is still emerging on ways to recognize, evaluate, and manage frailty.(

Research on frailty presents challenges, including that older adults living with frailty may not self-identify and people with lived or clinical experience of frailty (i.e., older adults, friends, family and caregivers, and care providers) are typically not involved in the research process, leaving important gaps in current knowledge.( For research priority-setting, involving those with lived or clinical experience has the potential advantages of democratizing allocation of research resources and increasing impact.( The James Lind Alliance (JLA) offers an established approach to involving patients, caregivers, and clinicians in developing shared research priorities through Priority Setting Partnerships (PSPs).(

The objectives of the Canadian Frailty PSP were to engage people with lived or clinical experience of frailty, and to produce a list of research priorities related to the care, support, and treatment of older adults living with frailty. Ultimately, the objective was to stimulate more research in these priority areas and, in doing so, improve the health and care of older adults living with frailty.

METHODS

The Canadian Frailty PSP followed the methods of the JLA, a non-profit initiative supported by the National Institute for Health Research (UK) which has facilitated roughly 80 PSPs that involve patients, carers and health and social care providers in developing shared research priorities. The JLA methods are available online (http://www.jla.nihr.ac.uk/jla-guidebook/) and described in brief here, as applied to the Canadian Frailty PSP. Research Ethics Board approval was obtained through the University Health Network.

A 17-person Steering Group, which included people with lived or clinical experience of frailty, researchers, and the Senior JLA Adviser, was established to oversee and advise the Canadian Frailty PSP. The Steering Group met monthly (October 2016 to August 2017), by teleconference.

Organizations that represent, serve or advocate for older adults or their care providers were identified through the Steering Group and Canadian Frailty Network (CFN) and asked to join as partner organizations. Partner organizations (see Appendix A) assisted by promoting surveys, identifying workshop participants, and disseminating results.

An open survey was conducted between March and June 2017, inviting people with lived or clinical experience of frailty to submit their questions about care, support, and treatment of older adults living with frailty. The survey was available in English and French, online (https://www.limesurvey.org/) and in paper format. The survey was adapted from previous PSPs with project-specific modifications, including to incorporate feedback from a consultation with Seniors Helping as Research Partners.(

3. Gather Questions About Frailty

The survey had three sections: Section One asked respondents to submit their questions about care, support, and treatment of older adults living with frailty as free text; Section Two collected demographic information; and Section Three invited respondents to participate in the prioritization process by submitting their contact information. In order to protect the privacy of respondents, Section Three data were collected and stored separately from the rest of the data, thus precluding any linkage or description of those who initially agreed to take part in this step. Completion of the survey was taken as implied consent. To align with the objective of the study—to produce a list of research priorities related to the care, support, and treatment of older adults living with frailty—frailty was explicitly defined in the survey, based on the CFN website description,( as:

“What is frailty?

We usually associate frailty with noticeable losses in a person’s physical, mental or social functioning. Frailty is a health state continuum ranging from fit to very frail, involving multiple health problems and often associated with getting older. Frailty can result from a range of diseases and conditions where even fairly minor health events can trigger major changes in a person’s health status.”

In addition to assistance from partner organizations, Steering Group members assisted with distributing the survey, community newspaper ads were run in Canadian cities (Edmonton, Winnipeg, Montreal, Mississauga, and Surrey), and paper surveys were mailed to older adults in the Seniors Helping Advance Research Excellence group.( Partner organizations were encouraged to promote the survey by means that were relevant to their community (e.g., social media, website, newsletter). There was no formal sampling frame for the survey, and thus, no reportable response rate.

Online survey data were downloaded into a spreadsheet and data from paper surveys were entered in this format. Only surveys with a response in Section One (questions about frailty) were included. Section One submissions were analyzed by the research team and one Steering Group member, who extracted information on population, intervention/exposure, control/comparison, and outcome (PICO) elements wherever possible. Submissions that were out of scope (i.e., not directly related to care, support, and treatment of older adults living with frailty) or could not be formulated into a question were excluded. The remaining questions were categorized, merged, and summarized as indicative questions. Questions that addressed a single domain of frailty (i.e., physical, mental or social functioning alone) were combined with questions that addressed frailty overall. To keep the list to a manageable size, questions that were asked only once were also excluded. Indicative questions were checked against research evidence. An Information Specialist searched Medline (Medline in Process and other non-indexed citations, ePubs and Medline Daily), Cochrane Database of Systematic Reviews, and Database of Abstracts of Reviews of Effects, to identify reviews related to frailty in older adults published between January 2014 and June 2017, limited to English, French or German language (see Appendix B). Titles and abstracts were reviewed and indicative questions were removed if a relevant, published, review indicated adequate evidence. The list of indicative questions was reviewed by the Steering Group before prioritization.

5 Prioritize the Questions

Interim Prioritization

A second survey was conducted between July and mid-September 2017, again inviting participation from Canadians with experience of frailty and available in English and French, online and via paper format. Individuals who provided their contact information in the first survey were contacted and others were invited to join through partner organizations. Respondents reviewed the indicative questions and identified their own top 10 priorities (unranked), then provided demographic information.

The frequency each question was selected was tabulated. In an attempt to balance input from persons with lived and clinical experience of frailty, stratified ranked lists were created to ensure both groups’ priorities were brought forward.

Final Prioritization

An in-person workshop, chaired and facilitated by the JLA Senior Advisor, was held in Toronto on September 26, 2017 to discuss and rank the short-listed questions. The final workshop followed the adapted Nominal Group Technique, as described by JLA. This involved small and large group discussions and ranking of questions, with participant types mixed to ensure a balance of patient, caregiver, and clinician experience. All participants had the opportunity to share their top and bottom priorities before the ranking began, in order to understand each other’s perspectives. Consensus was mainly reached through discussion, with decisions put to a vote if required. Independent facilitators ensured that no single voice dominated and that everyone had a chance to have their say. All participants agreed to a basic ground rule of respecting different opinions, and compromise was acknowledged.

Participants included older adults, friends, family and caregivers of older adults, as well as health and social care providers. Some Steering Group members (those with lived or clinical experience of frailty) participated, and researchers attended as observers. Written consent was obtained from participants and travel expenses were reimbursed. Assistance with travel arrangements was offered, including for an accompanying person for older adults. The workshop was held in an accessible venue, close to public transit. The workshop format was adapted to encourage involvement of older adults (e.g., larger-font materials, longer break, and smaller group discussions). A member of the research team also worked with one of the older adults to discuss the questions before the workshop and record comments.

RESULTS

Table 1 describes the 389 and 146 individuals and groups who submitted their questions about frailty and participated in the interim prioritization, respectively. Figure 1 summarizes the flow of data, beginning with the 799 submissions that were provided by 389 individuals and groups from across Canada. These submissions were summarized and checked to create the list of 41 indicative questions (provided in Appendix C) which were then narrowed down during the interim prioritization to 22 questions for discussion at the final prioritization workshop, where the top 10 ranked priorities were decided.

TABLE 1

Description of Canadian Frailty Priority Setting Partnership survey respondents

	Initial Survey (n=389)		Interim Prioritization (n=146)
	n	%	n	%
Are you completing this questionnaire alone or as a pair or group?
Alone	379	97.4%	141	96.6%
As a pair or group	4	1.0%	1	0.7%
Not specified	6	1.5%	4	2.7%
Which of the following best describes you? Check all that apply.
Older adult concerned about frailty (i.e., experiencing noticeable losses in health and/or physical, mental or social functioning)	52	13.4%	6	4.1%
Older adult with no direct experience of frailty, but interested in it	52	13.4%	10	6.8%
Partner, relative or friend of a frail older adult	82	21.1%	25	17.1%
Caregiver or former caregiver of a frail older adult	72	18.5%	29	19.9%
Health and/or social care provider, current profession:	273	70.2%	112	76.7%
Dietitian	67	17.2%	48	32.9%
Nurse	55	14.1%	18	12.3%
Occupational therapist	8	2.1%	6	4.1%
Pharmacist	10	2.6%	9	6.2%
Physician	89	22.9%	10	6.8%
Physiotherapist	9	2.3%	3	2.1%
Personal support worker, care aide or community health worker	4	1.0%	0	0.0%
Recreation therapist	11	2.8%	4	2.7%
Social worker	6	1.5%	4	2.7%
Other	26	6.7%	11	7.5%
Which part of Canada do you live in? Check all that apply.
Alberta	59	15.2%	13	8.9%
British Columbia	56	14.4%	17	11.6%
Manitoba	13	3.3%	8	5.5%
New Brunswick	7	1.8%	9	6.2%
Newfoundland and Labrador	3	0.8%	1	0.7%
Northwest Territories	0	0.0%	1	0.7%
Nova Scotia	12	3.1%	6	4.1%
Nunavut	0	0.0%	0	0.0%
Ontario	208	53.5%	81	55.5%
Prince Edward Island	2	0.5%	1	0.7%
Quebec	25	6.4%	7	4.8%
Saskatchewan	2	0.5%	1	0.7%
Yukon	0	0.0%	0	0.0%
What are your ethnic or cultural origins? Check all that apply.
North American Aboriginal	5	1.3%	3	2.1%
Other North American (e.g., Canadian or American)	238	61.2%	81	55.5%
European	135	34.7%	50	34.2%
Caribbean	1	0.3%	1	0.7%
Latin, Central or South American	1	0.3%	1	0.7%
African	3	0.8%	1	0.7%
Oceania (e.g., Australian)	1	0.3%	0	0.0%
Asian (e.g., Middle Eastern, South, East and Southeast Asian)	21	5.4%	7	4.8%
Prefer not to say	11	2.8%	6	4.1%
What is the highest certificate, diploma or degree that you have completed?
Less than high school diploma or its equivalent	0	0.0%	0	0.0%
High school diploma or a high school equivalency certificate	18	4.6%	2	1.4%
Post-secondary certificate or diploma (including college, CEGEP or trades)	39	10.0%	8	5.5%
University degree	314	80.7%	126	86.3%
Prefer not to say/not specified	18	4.6%	10	6.8%
How do you identify?
Male	66	17.0%	12	8.2%
Female	304	78.1%	125	85.6%
Other	0	0.0%	0	0.0%
Prefer not to say/not specified	19	4.9%	9	6.2%
In what year were you born?
1920–1939	47	12.1%	4	2.7%
1940–1959	121	31.1%	39	26.7%
1960–1979	125	32.1%	56	38.4%
1980–1999	71	18.3%	30	20.5%
Prefer not to say/not specified	25	6.4%	17	11.6%
Do you receive the Guaranteed Income Supplement?
Yes	10	2.6%	2	1.4%
No	172	44.2%	52	35.6%
Prefer not to say/not specified	2	0.5%	1	0.7%
Not applicable (question not posed to health and social care providers unless also identified lived experience)	205	52.7%	91	62.3%

FIGURE 1

Summary of the data from the Canadian Frailty Priority Setting Partnership

Subsequent to the interim prioritization survey, after reviewing the stratified ranked lists, one question was added to the list of questions for the workshop to ensure that both groups’ priorities (top 14 ranked questions) were discussed. There were 21 participants at the workshop (from British Columbia, Alberta, Ontario, Quebec, New Brunswick, and Nova Scotia); 9 represented lived experience and 12 represented clinical experience, but many participants referred to dual roles (e.g., older adults and clinicians with family caregiving experience). The top 10 ranked research priorities are listed in Table 2 and the complete ranked list of 22 questions is available online: http://www.jla.nihr.ac.uk/priority-setting-partnerships/frailty-canada/top-10-priorities.htm

TABLE 2

Top 10 priorities for frailty research from the Canadian Frailty Priority Setting Partnership

How can the health system be organized to provide integrated/coordinated care that would better meet the health and social care needs of older adults living with frailty and their family/caregivers? How can care, services and treatments be tailored to meet the needs of older adults living with frailty who are isolated and/or without family/caregiver support or advocates? What is the impact of community- and home-based services, programs and resources in preventing and managing frailty (including slowing progression and/or minimizing the impact of frailty)? What are the costs and benefits of alternative models of housing, including multigenerational or shared living, for older adults living with frailty? What would help avoid unnecessary hospitalizations and emergency department visits for older adults living with frailty? What frailty-related attitudes, skills and knowledge should health and social care providers have? What are effective ways of improving attitudes and providing skills and knowledge about frailty for health and social care providers? What would help older adults living with frailty and their family/caregivers recognize when living at home is no longer viable? What are effective ways of supporting family/caregivers of older adults living with frailty to maintain their own health and wellbeing and/or that of older adults living with frailty? How can frailty measures be used by health care practitioners, older adults and family/caregivers to inform treatment and care decisions? What is the impact of exercise and physical activity (including type, duration and intensity) in preventing and managing frailty (including slowing progression and/or minimizing the impact of frailty)?

DISCUSSION

The Canadian Frailty PSP was the first JLA PSP to engage those with lived or clinical experience of frailty in setting shared priorities for research. The priorities highlight issues related to the health, wellbeing, and care of older adults living with frailty and their family/caregivers, and include questions related to social determinants of health.

The results complement a recent review which examined literature on frailty in acute care and consulted a panel of experts for research recommendations.( Despite incomplete overlap in scope, both the review and the Canadian Frailty PSP highlight the clinical utility of frailty detection, interventions to safely avoid hospitalization, and frailty prevention as priorities for research. Notably, the review also emphasized the importance of involving patients and family in research.

Certain limitations must be considered in interpreting these results. First, the data show that the process reached only a subset of Canadians with experience in frailty (i.e., those that participated were mainly women, more than half were from Ontario, nearly all had European or North American ethnic or cultural origins, and most had a university degree), and results are not representative of groups and individuals with specific needs. Second, obtaining responses from older adults who self-identified as frail was challenging. Aside from the barriers that frailty may pose for participation,( many who meet criteria for frailty will not perceive themselves as frail,( and the term will have a negative connotation for some.( Coupled with the apparent divergent meanings of frailty in different contexts, the term “frailty” may have been a barrier for involving older adults and establishing a common understanding for those involved. In other words, when engaging older adults, the process itself was likely biased towards a healthier population, but asking respondents to self-identify as frail may well have had the opposite effect and, together, these phenomena no doubt impacted the final results. Yet, there are important reasons for engaging those with lived experience in research, and these limitations reiterate that strategies are needed for engaging older adults living with frailty in research and to demonstrate the benefits of this engagement.(

The Canadian Frailty PSP results offer researchers and research funders an opportunity to incorporate perspectives of those with lived and clinical experience of frailty. The themes are wide-ranging, in that they can be addressed through diverse research approaches and methods. Still, the results of the Canadian Frailty PSP are not intended as the only priorities to inform the frailty research agenda, and further work is needed to engage older adults and others with experience of frailty across the research process.