Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness

Abstract

Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. Methods Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. Results We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. Conclusions SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. Trial registration May 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421.

Challenges developing an electronic patient-reported outcome measurement for palliative home care: A qualitative interview and focus group study

“…A study of the feasibility of paper-based PROMs in German specialised palliative home care identified health care professionals’ concerns about burdening patients in this way. 9 In contrast, our results suggest that the use of ePROMs could also serve as a facilitator as it allows patients to better understand and express the perception of their illness.…”

“…21–23 Our results suggest that this could be overcome for the setting of palliative home care by family caregivers using ePROMs as proxies, as it is already recommended for the implementation of paper-based PROM use. 9…”

A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic?

“…Patient reported outcome measures are increasingly used in traditional palliative day care, but the acceptability and feasibility of outcome measurement is less established in newer settings. [61]…”

State-wide implementation of patient-reported outcome measures (PROMs) in specialized outpatient palliative care teams (ELSAH): A mixed-methods evaluation and implications for their sustainable use

“…For the self-report, the SOPC-team members included the items into the conversations. Because we found in a previous study that it needs tact to address sensitive topics, we did not arrange predefined time points for selfreport, but made the default to assess every topic when the information was collectible [26]. If a self-report was not possible, e.g.…”

“…We found that they should be used considerately in order to minimize the burden on patients and relatives, and ensure their administration was manageable. It was also important that participants understood that the measures were useful [26].…”