Webinar Series November 30, 2016

Transcription

1 Webinar Series November 30, 2016 Improve decision making involving frail elderly and caregivers on location of care France Légaré, MD, PhD, CCFP, FCFP Université Laval

2 Welcome to the CFN Webinar Series Improve decision making involving frail elderly and caregivers on location of care Hosted by: Kate Cooke Manager, Communications and Corporate Initiatives Webinar & slides posted on CFN website:

3 Q-&-A session Follows Dr. Légaré s presentation Submit your Qs online during presentation We will answer as many Qs as time permits Webinar is recorded and available for viewing online within 1-2 days:

4 Presenter Improve decision making involving frail elderly and caregivers on location of care Full Professor in the Department of Family Medicine and Emergency Medicine at Université Laval Clinical Investigator at the CHUQ Research Centre Canadian Cochrane Network Site representative at Université Laval and CHUQ Research Centre Tier 1 Canada Research Chair in shared decision making and knowledge translation France Légaré, MD, PhD, CCFP, FCFP

5 Improving the decision making process with the frail elderly and their caregivers about location of care (LOC)- Preliminary results France Légaré, B. Arch, MD, PhD, CCFP, FCFP Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation Dawn Stacey, RN, PhD, Research Chair in Knowledge Translation to Patients, Ottawa Health Research Institute, University of Ottawa Nathalie Brière, PhD, CIUSSS de la Capitale-Nationale, CERSSPL- Université Laval Rheda Adekpedjou, MD, PhD (c) CFN Webinar Series November 30, 2016

6 Team members Co-investigators Maman Joyce Dogba, MD, PhD, Université Laval Kimberly Fraser, RN, PhD, University of Alberta Sophie Desroches, RD, PhD, Université Laval Serge Dumont, PhD, Université Laval Pierre Jacob Durand, MD, Université Laval Louis-Paul Rivest, PhD, Université Laval Project coordinator Adriana Freitas, PhD Caregiver representatives Henriette Bourassa Lise Roy Highly Qualified Professionals Julie Emond, MSc Mirjam M Garvelink, PhD Maria Marguerita Becerra Perez, RN, MSc Laura Boland, PhD (c) Matthew Menear, PhD Noémie Roy, MSc (c) Stéphane Turcotte, Msc THANKS TO OUR FINANCIAL PARTNERS

7 Learning objectives Understand the decision-making context and processes regarding location of care (e.g. housing decisions) among the frail elderly Understand the steps and challenges of conducting a crct about location of care (LOC) in the home care sector Discuss the decisional needs of the frail elderly and their caregivers regarding LOC and solutions proposed by an interprofessional (IP) approach to shared decision making (SDM)

8 Plan Rationale Cluster randomized trial with post-test Some of the resources needed to run this trial Lessons learned Deliverables

9 Why did we do this trial? : we developed an interprofessional (IP) approach to SDM with community based primary health care (CBPHC) organizations 2010: CBPHC organizations asked us to work with IP home care teams to help them support frail elderly clients and their caregivers facing decisions about LOC : we piloted successfully an IP approach to SDM with two home care teams in Quebec City and Edmonton 2012: however we had not documented its impact on clinical practices nor on frail elderly clients and their caregivers LEGARE, F., et al BMC Health Serv Res, 8, 2.; STACEY, D., et al Patient Educ Couns, 80, ; LEGARE, F., J Eval Clin Pract, 17, ;LEGARE, F., et al J Interprof Care, 25, ; LEGARE, F., et al BMC Health Serv Res, 11, 23.; LEGARE, F., et al J Interprof Care.; STACEY, D., et al J Interprof Care, 28, ; LEGARE, F., et al BMC Geriatr, 14, 83.

10 Why is this relevant to the frail elderly and their caregivers? 1 out of 5 adults (aged 18 years old) in Quebec has made this decision for him/herself or a loved one in the past year. In 2015, Quebec had the highest % of population aged 75 years+ who occupied a standard or nonstandard space in a seniors residence (18.4%), in 2016 while Nova Scotia had the lowest rate (2.0%) (across Canada: 9.1%). Leger Recherche. Les Québécois et le choix d un milieu de vie et de soins. Rapport d analyse d un sondage OmniWeb. Université Laval, 2016.

11 What is an interprofessional (IP) approach to SDM? Légaré F, Stacey D, and IP Team, Available from

12 What was our research PICO question? Among the frail elderly and their caregivers (P), does exposure to a home care team trained in an IP approach to SDM and a decision support guide (I) compared to usual care (C) improve engagement of the frail elderly or caregivers in their decision-making process regarding LOC (O)?

13 What were our methods?

14 Cluster randomized clinical trial with post-test April May /34 sites enrolled Ethical approval (n=16) June October 2014 September 2014 February 2015 Meeting the managers of the home care teams from the 16 sites BASELINE: 1 st data collection (5 participants/site to compare sites) February 2015 Random distribution of 16 sites to two groups Control group (n=8) Intervention group (n=8) February May 2015 March 2015 August 2016 IP-SDM training (n=8) AFTER INTERVENTION: 2 nd data collection (25 participants/site) September-December IP-SDM training (n=8) ClinicalTrials.gov Identifier: NCT

15 Participants - eligibility criteria CBPHC organizations Served a geographical area with a population of over 10,000 inhabitants Their distance from Quebec City (location of research team) was less than 500 km Home care teams and providers Involved in healthcare for eligible frail elderly people Clients or caregivers having made a decision about LOC: Frail elderly people with no cognitive impairment ( 65 years old) or Caregivers of frail elderly people ( 65 years old) with cognitive impairment

16 The 16 participating CBPHC organizations

17 Intervention Providers Ottawa SDM online tutorial (1h30) Workshop (3h30): IP-SDM approach Observation grid (video) Video IP-SDM model Decision guide Role play Presentation page by page Decision guide use and the IP-SDM model Elders/caregivers Decision guide: To get the care and services I need, should I stay in my home or move? Material available in both French and English

18 Primary outcome Outcomes Assumed role in the decision-making process reported by the frail elderly person or the caregiver (dichotomous: active role/abc vs passive role/de) Secondary outcomes Preferred and chosen option (remain at home or move to care facility) Match between role preferred and assumed in decision making Decisional conflict Decision regret Burden of care in caregivers Quality of life in the frail elderly

19 Sample size and analysis Expected baseline proportion of active role in decision making: 50% Absolute differences between groups: 20% Power: 5% α significance level: 5% Planned ICC: 0.05 Estimated sample size per cluster: 28 Number of clusters: 16 Planned total sample size: 456 Descriptive statistical analysis of organizational (CBPHC /health professionals) and sociodemographic (clients/health professionals) characteristics Multilevel modeling to take into acount the hierarchical structure The proportion of clients reporting an active role in the decision-making process was analyzed through multilevel logistic regression (GLIMMIX procedure of SAS)

20 What were our results?

21 Adekpedjou. R. et al. In preparation

22 Adekpedjou. R. et al. In preparation

23 Characteristics of participating CBPHC/healthcare providers Characteristics n (%) CBPHC/Healthcare providers CBPHC Intervention arm (n=8) Control arm (n=8) Urban/semi-urban 3 (37.5) 2 (25) Rural 5 (62.5) 6 (75) Healthcare providers Intervention arm (n=119) Control arm (n=130) Age, years (median IQR) 35.9 ( ) 36.8 ( ) Female 104 (87.4) 120 (92.3) Profession Social worker 48 (40.3) 33 (25.4) Physiotherapist 3 (2.5) 5 (3.8) Nurse 30 (25.2) 30 (23.1) Occupational therapist 9 (7.6) 17 (13.1) Other 29 (24.4) 45 (34.6) Experience in home care, years (median IQR) 8 (2 12) 5.5 (2 12) Intention to adopt IP-SDM approach at baseline, median score (IQR) (response scale 1-7) 6 (5 6.5) 6 (5 6.5) Adekpedjou. R. et al. In preparation

24 Characteristics of participating elders with no cognitive impairment Adekpedjou. R. et al. In preparation

25 Characteristics of participating caregivers of elders with cognitive impairment Adekpedjou. R. et al. In preparation

26 Characteristics of participating caregivers of elders with cognitive impairment (cont d) Adekpedjou. R. et al. In preparation

27 Primary outcome Variable n (%) Intervention arm (n=138) Control arm (n=158) Role assumed in the decision-making Active role 71 (51.5) 11% 64 (40.5) Collaborative role 38 (27.5) 44 (27.9) Passive role 28 (20.3) 50 (31.6) Missing 1 (0.7) 0 (0.0) p= 0.09; ICC: 0.14 Adekpedjou. R. et al. In preparation

28 What were some of the resources needed to run this trial? Pre engaging clinic sites Contacting potentially eligible CBPHCs and having them provide a letter to submit with our grant proposal ; this was associated with participating later to the trial Develop a trusting relationship with sites Train RAs (n=16) to conduct respectful meetings with elders and caregivers Visiting all 16 sites to meet home care team managers (Summer 2014): Beauce - Louiseville - St-Pamphile - Portneuf - Rimouski - Québec (VC) - Amqui - Chicoutimi - Jonquière - Québec (Nord) - Trois Rivières - Lac-St-Jean-Est - Kamouraska - Charlevoix - Baie-Comeau - Chandler Developing paper-based training material following the recommendations of a multicentric ethics committee Phone call with the research coordinator to answer their questions, and follow-up Need a good car and a good car driver! km travelled 60 hours spent to get everybody ready for the job!

29 Co-construction of the decision guide Cycle 1: Development of a prototype Needs assessment Search for existing DAs and selection of generic OPDG Evidence about options: pilot umbrella review Prototype 1: 8 page booklet, IPDAS fulfilled Cycle 2: Adjusting the prototype Usability testing 1 (caregivers) Adjusting prototype (multiple cycles): deletion pros and cons IPDAS Cycle 3: Finalizing the tool Refining prototype Readability (software) grade 4-5 Usability testing 2 (seniors): info clear, amount right, balanced, helpful.

30 Decision guide To get the care and services I need, should I stay in my home or move?

31 BASELINE: 1st data collection (5 participants/site to compare sites) Potentially eligible participants identified (n=165) Potentially eligible participants contacted by a resource person (RP) (n=143) not to be contacted (according to the judgement of the provider) (n=22) Elders contacted by RP (n=57) Caregivers contacted by RP (n=86) Refused (n=8) Refused (n=17) Not reached after 3 calls (n=2) Elders contacted by RA (n=47) Caregivers contacted by RA (n=65) Not reached after 3 calls (n=4) Refused (n=15) Refused (n=16) Not reached after 3 calls (n=1) Elders recruited (n=31) 47,8% of potentially eligible participants Caregivers recruited (n=48) Not reached after 3 calls (n=1) Adekpedjou. R. et al. Submitted

32 Lessons learned after baseline Different recruitment rates across participating sites Personalized attention to those experiencing recruiting difficulties Caregivers represented the largest group of participants identified by sites (both urban and rural) Caregivers experienced more difficulty engaging in the decision making process than the elders themselves However, proportion of caregivers with assumed active role in the decision-making process (primary outcome) was higher than expected (67%) Focus on caregivers Recalculate the needed sample size

33 What feedback did we get from the home care team?

34 Confidence using the decision guide Before the training (n=183) After the training (n=209) Not at all confident Somewhat confident Extremely confident Not at all confident Somewhat confident Extremely confident

35 Confidence that this will support the elderly and their caregivers in engaging in the decision-making process 90 After training n=209) Not at all confident Somewhat confident Extremely confident

36 Changes in the health care system: Bill 10 14/16 managers who were initially assigned to be our resource persons changed position during the restructuring of the health system

37 What did we learn from subgroup analysis and secondary outcomes?

38 Role assumed by caregivers in the decision-making process effect observed in urban vs. rural regions Variable n (%) Role assumed in the decision-making (urban/semi-urban setting) Intervention arm (n=138) Control arm (n=158) Active/collaborative role 40 (81.6) 13 (65) Passive role 9 (18.4) 7 (35) Role assumed in the decision-making (rural setting) 17% Active/collaborative role 69 (78.4) 95 (68.8) 10% Passive role 19 (21.6) 43 (31.2) The effect in urban/semi-urban settings is more pronounced than in rural ones Adekpedjou. R. et al. In preparation

39 Role preferred vs. role assumed by caregivers in the decision-making process Variable n (%) Intervention arm (n=138) Control arm (n=158) Role preferred in the decision-making Active role 66 (47.8) 69 (43.7) Collaborative role 52 (37.7) 61 (38.6) Passive role 19 (13.8) 28 (17.7) Missing 1 (0.7) 0 (0.0) Role assumed in the decision-making Active role 71 (51.5) 64 (40.5) 11% Collaborative role 38 (27.5) 44 (27.9) Passive role 28 (20.3) 50 (31.6) Missing 1 (0.7) 0 (0) Mismatch between role preferred and role assumed 49% 13 (25.5) 38 (74.5) Adekpedjou. R. et al. In preparation

40 Limitations These are preliminary results Lack of power Self reported experienced of caregivers and clients (PROMs) Heterogeneity of home care teams composition

41 Conclusion IP home care teams thought that the IP-SDM intervention gave them what they needed to use the decision guide and engage elders and caregivers in their LOC decision-making process The training was highly appreciated However, team members expressed the need for more tools focusing on more complicated decision making scenarios (cognitively impaired seniors, dysfunctional families, etc.) The intervention: improved the engagement of caregivers in their LOC decision making process but this was not statistically significant seems to have more impact in urban/semi-urban sites than in rural sites improved the match in caregivers between the roles preferred and assumed in the decision-making process

42 Highly qualified professionals

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45 Survey and Future Webinars Brief survey will pop up on your screen within next few seconds. Your responses provide us with feedback on how we can improve the webinar series. Upcoming webinars register using the link below Wednesday, December 7, 2016 at 12 noon ET Piloting of volunteer and healthcare provider partnership to provide navigation for rural, frail older adults results of CFN-funded Catalyst Grant Wendy Duggleby, University of Alberta, Barbara Pesut, University of British Columbia Wednesday, December 14, 2016 at 12 noon ET Talk to me: seriously ill patients' views on physician behaviours that influence the quality of end-of-life communication results of CFN-funded Core Grant John You, McMaster University Webinar slides & video available after the webinar at: cfn-nce.ca/news-and-events/webinars