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Hansen TK, Jensen AL, Damsgaard EM, et al. Involving frail older patients in identifying outcome measures for transitional care-a feasibility study. Res Involv Engagem. 2021;7(1):36doi: 10.1186/s40900-021-00288-9.
Hansen, T. K., Jensen, A. L., Damsgaard, E. M., Rubak, T. M. M., Jensen, M. E. J., & Gregersen, M. (2021). Involving frail older patients in identifying outcome measures for transitional care-a feasibility study. Research involvement and engagement, 7(1), 36. https://doi.org/10.1186/s40900-021-00288-9
Hansen, Troels Kjærskov, et al. "Involving frail older patients in identifying outcome measures for transitional care-a feasibility study." Research involvement and engagement vol. 7,1 (2021): 36. doi: https://doi.org/10.1186/s40900-021-00288-9
Hansen TK, Jensen AL, Damsgaard EM, Rubak TMM, Jensen MEJ, Gregersen M. Involving frail older patients in identifying outcome measures for transitional care-a feasibility study. Res Involv Engagem. 2021 Jun 03;7(1):36. doi: 10.1186/s40900-021-00288-9. PMID: 34082836; PMCID: PMC8173811.
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Res Involv Engagem. 2021 Jun 03;7(1):36. doi: 10.1186/s40900-021-00288-9.

Involving frail older patients in identifying outcome measures for transitional care-a feasibility study.

Research involvement and engagement

Troels Kjærskov Hansen, Annesofie Lunde Jensen, Else Marie Damsgaard, Tone Maria Mørck Rubak, Mikkel Erik Juul Jensen, Merete Gregersen

Affiliations

  1. Department of Geriatrics, Aarhus University Hospital, Aarhus, Denmark. [email protected].
  2. ResCenPi - Research Centre for Patient Involvement, Aarhus University & the Central Denmark Region, Aarhus, Denmark. [email protected].
  3. ResCenPi - Research Centre for Patient Involvement, Aarhus University & the Central Denmark Region, Aarhus, Denmark.
  4. Department of Geriatrics, Aarhus University Hospital, Aarhus, Denmark.

PMID: 34082836 PMCID: PMC8173811 DOI: 10.1186/s40900-021-00288-9

Abstract

BACKGROUND: During care transitions, the older (75+) patient's agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving patients and other stakeholders as researchers is gaining ground. Patient and public involvement (PPI) in research entails many benefits, for example, by bringing further insight from those with lived experiences of being ill. There are various challenges associated with involving some older patients, for example frailty, cognitive impairment and other chronic illnesses. To the best of our knowledge, there are only a few examples of initiatives involving older patients beyond research participation. The feasibility of involving frail older patients during an ongoing care transition from hospital to primary health care remains unknown. To investigate the feasibility of including older frail patients, their relatives and health care professionals (HCPs) as co-researchers, we established a study with increasingly demanding levels of patient involvement to identify relevant outcome measures for future transitional care research.

METHODS: The study was a pragmatic, qualitative feasibility study. The involved individuals were frail older patients, their relatives and HCPs. Patients and their relatives were interviewed, while the interviewer made reflective notes. A thematic analysis was made. Relatives and HCPs discussed the themes to identify relevant outcome measures and potentially co-create new patient-reported outcome measures (PROMs) for use in future transitional care studies. The feasibility was evaluated according to six involvement steps. The level of involvement was evaluated using the five-levelled Health Canada Public Involvement Continuum (HCPIC).

RESULTS: In total, eight patients, five relatives and three HCPs were involved in the study. Patients were involved in discussing care transitions (HCPIC level 3), while some relatives were engaged (HCPIC level 4) in forming PROMs. The partnership level of involvement (HCPIC level 5) was not reached. The thematic analysis and the subsequent theme discussion successfully formed PROMs. The key PROMs were related to care, transparency and the relatives' roles in the transitional care process.

CONCLUSIONS: When applying a pragmatic involvement approach, frail older patients can be successfully involved in identifying relevant transitional care outcome measures; however, involving these patients as fellow researchers seems infeasible. To maintain involvement, supportive relatives are essential. Useful experiences for future research involvement of this vulnerable group were reported, arguing that patient participation has the potential to become inherent in future geriatric research.

Keywords: Core outcome sets; Elderly; Frailty; Patient and public involvement; Patient-reported outcome measures; Relatives; Transitional care

References

  1. J Clin Epidemiol. 1998 Nov;51(11):1001-11 - PubMed
  2. Clin Cardiol. 2020 Feb;43(2):196-204 - PubMed
  3. Rejuvenation Res. 2008 Feb;11(1):151-61 - PubMed
  4. Health Expect. 2018 Apr;21(2):518-527 - PubMed
  5. J Clin Nurs. 2017 Dec;26(23-24):4353-4363 - PubMed
  6. J Pers Assess. 1996 Feb;66(1):20-40 - PubMed
  7. Res Involv Engagem. 2016 Aug 30;2:30 - PubMed
  8. Age Ageing. 2007 Sep;36(5):492-500 - PubMed
  9. Sante Publique. 2015 Jan-Feb;27(1 Suppl):S41-50 - PubMed
  10. Qual Health Res. 2016 Nov;26(13):1753-1760 - PubMed
  11. Gerontologist. 2001 Oct;41(5):652-7 - PubMed
  12. Lancet. 2013 Mar 2;381(9868):752-62 - PubMed
  13. J Am Geriatr Soc. 2017 Jun;65(6):1119-1125 - PubMed
  14. J Clin Nurs. 2015 Jun;24(11-12):1693-706 - PubMed
  15. Age Ageing. 2016 May;45(3):337-45 - PubMed
  16. BMC Health Serv Res. 2014 Feb 26;14:89 - PubMed
  17. Res Involv Engagem. 2016 Jul 8;2:25 - PubMed
  18. J Gerontol A Biol Sci Med Sci. 2015 Mar;70(3):325-31 - PubMed
  19. Int J Environ Res Public Health. 2017 Nov 29;14(12): - PubMed
  20. CMAJ. 2018 Nov 7;190(Suppl):S40-S41 - PubMed
  21. Patient Educ Couns. 2011 Oct;85(1):68-73 - PubMed
  22. J Comp Eff Res. 2013 Sep;2(5):457-68 - PubMed
  23. J Pers Assess. 1978 Jun;42(3):290-4 - PubMed
  24. J Ment Health. 2012 Jun;21(3):296-306 - PubMed
  25. Health Soc Care Community. 2005 May;13(3):268-75 - PubMed
  26. Geriatr Nurs. 2019 Mar - Apr;40(2):148-153 - PubMed
  27. Int J Older People Nurs. 2020 Sep;15(3):e12314 - PubMed
  28. Ann Fam Med. 2018 May;16(3):225-231 - PubMed
  29. Gerontol Geriatr Med. 2019 Dec 29;5:2333721419897781 - PubMed
  30. J Am Geriatr Soc. 2020 Mar;68(3):474-477 - PubMed
  31. Age Ageing. 2015 May;44(3):533-6 - PubMed
  32. Ageing Res Rev. 2020 Jul;60:101047 - PubMed

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