gms | German Medical Science

Background and status of (inter)national research: Patient-reported outcome measures (PROM) benefit care in many ways. Electronic PROMs serve to support symptom monitoring in palliative home care for patients with complex and highly fluctuating symptoms. eIPOS is an electronic version of the Integrated Palliative Outcome Scale, a widely used questionnaire to assess symptom burden and palliative concerns.

Research question and objective: To test the feasibility of an ePROM system (eIPOS) in German specialist palliative home care (SPHC).

Method: Convergent mixed methods design: Quantitative quasi-experimental study with retrospective and prospective control group; Qualitative interviews with patients and focus groups with professionals. Descriptive and framework analyses were used. The qualitative and quantitative data were integrated using a joint display.

Results: In the experimental study, overall recruitment rate was low (4.7%). Of the patients who met the inclusion criteria (n=361), 22.7% were recruited. Non-eligibility was due to very poor and/or fluctuating general condition. 82 patients (40 women) participated in the study. Mean age of eIPOS patients was 68.5 years (range 23–99), median 70 years. Compared to the prospective and retrospective control group, the eIPOS patients were younger and in better general health. 470 eIPOS forms were submitted electronically. Apart from the open-ended questions, missing values in the submitted eIPOS were very low. Twenty-three interviews were conducted with patients using eIPOS and two focus groups with professionals (total n=7). Using eIPOS sometimes involved effort, such as getting out of bed to use the laptop, as eIPOS was not suitable for smartphones. Positive aspects of electronic assessments mentioned were greater support with measuring relevant symptoms and concerns and also encouraging self-reflection. The scope of the questionnaire was assessed as appropriate, while the psychosocial questions were seen as controversial. The free-text questions were perceived as a valuable opportunity to express individual aspects, but also as a challenge to complete.

Discussion: By using the mixed-methods approach, we have gained multiple insights into the benefits of ePROM implementation in home-based palliative care. Starting with findings about the potential user groups in the setting, to substantial insights into the actual use of ePROM with its potential for care. The relatively low recruitment rate during this feasibility study was partly caused by the lack of owned internet-enabled devices or difficulties in using them. This will be less relevant for future use of ePROM in palliative care due to the progressive establishment of internet-enabled devices in today's society.

Practical implications: The use of eIPOS is feasible in home-based care, but limited by patients’ poor health. eIPOS may have a high potential in earlier phases of the care process. The involvement of informal carers in completing the eIPOS is recommended.

Appeal for practice (science and/or care) in one sentence: Specific aspects such as the patient's condition and the specific workflows need to be taken into account to realize the potential through ePROMs for better care.

Funding: Innovationsfonds/Versorgungsforschung; 01VSF17014