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

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.

A concept analysis of transitional care for people with cancer

“…Our review emphasized the importance of patient participation in transitional care. It can be reached through the conscious and coherent efforts of specialists and healthcare systems that improve transitional care consequences (Hansen et al, 2021).…”

“…Our review emphasized the importance of patient participation in transitional care. It can be reached through the conscious and coherent efforts of specialists and healthcare systems that improve transitional care consequences (Hansen et al., 2021). Patients' perspectives, needs and abilities should be evaluated during transitional care, and patient participation should be increased through joint decision‐making about care programmes.…”

What matters most in acute care: an interview study with older people living with frailty

“…The involvement as research partners of people living with frailty has previously been described as ‘unfeasible’, and researchers have often relied on people’s relatives and healthcare professionals [ 39 ]. Not only were we able to engage people with a range of levels of frailty in potentially complex discussions, but they had actively reflected upon their outcomes prior to the hospital attendance.…”

Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: A scoping review

“… 58 A trial of this process with an older population with advancing frailty found that maintaining involvement from older people was essentially dependent on having supportive relatives. 59 Despite potential barriers, any future tools developed to address the needs of older people with multimorbidity should incorporate co-design. Tools that sit within integrated models of care and incorporate both patient experience and outcomes may be more attuned to capturing and responding to this population’s needs.…”