Entwicklung, Pilotierung und Implementierung eines Verfahrens zur Darstellung der patientenzentrierten Ergebnisqualität in der spezialisierten ambulanten Palliativversorgung (SAPV)

Background: Specialized outpatient palliative care (SOPC) is available to persons with life-limiting diseases and complex care needs. It aims to improve quality of life and to relieve suffering. Measuring the quality of care enables health professionals to identify potential for improvement. As the subjective experience of the persons concerned has priority, the outcome from the perspective of patients and relatives is particularly relevant. In addition, the use of patient-reported outcomes measures (PROMs) enables care to be adapted to the needs of patients and their relatives. The documentation of SOPC in Hesse focused so far only little on patient-reported outcomes. This dissertation aims to identify the key issues of successful SOPC as well as to investigate how the regular use of patient-centred outcome measures including PROMs can succeed in daily SOPC in Hesse. Methods: We chose to use a mixed methods design. First, we used qualitative methods to identify the key issues that contribute to successful SOPC from the perspective of patients, relatives, and professionals. For this purpose, we conducted participant observations, interviews, and focus groups using a grounded theory approach. Based on the findings and a literature overview, we chose to use the following patient-centred outcome measures: Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) - patient version, Phase of Illness in Palliative Care (PoI), 7-item short form of Zarit Caregiver Burden Interview (ZBI-7). We tested the application of these measures in five SOPC-teams. We evaluated the application using focus groups and field notes on feedback from SOPC staff. In an iterative process, we refined use and evaluated the adjustments. Then, we implemented the use of the instruments in 19 SOPC teams in Hesse. We evaluated use using a mixed methods design including focus groups and an online survey. We triangulated the results and derived implications for a sustainable use. Results: From the perspective of those involved, successful SOPC needs to treat complex symptoms, facilitate a sense of security, provide comprehensive care for patients and their relatives, promote the quality of relationships, respect individuality, and enable self-determination. These issues should be considered in daily SOPC and in the evaluation of the quality of care. Piloting in five SOPC teams showed that integrating IPOS, IPOS Views on Care and PoI into daily SOPC is feasible. We removed ZBI-7 from the set of measures, because it was not found to be appropriate in practical use. For a feasible, acceptable and appropriate integration of the measures into daily care, the burden on patients and relatives must be kept to a minimum and sensitive use must be enabled. Furthermore, the administration must be manageable and the usefulness of the measures must be understood. After implementation in 19 Hessian SOPC teams, it became apparent that the majority of professionals were able to integrate the application into their daily work. Some professionals felt unconfident in the application, had concerns to burden patients and relatives, or feared that the quality of their work would not be properly reflected. For sustainable use, these concerns must be addressed and motivation must be encouraged. To do this, professionals need to understand how use of the measures can help to improve SOPC and how it can benefit those affected. Discussion and conclusion: The implemented patient-centred outcome measures represent an essential component for the evaluation of the quality of care in SOPC, because the subjective experience of patients and relatives can be shown. The statewide application creates a good data basis for further research and can show potential for improvement in practical work. The sustainable integration into the daily work needs permanent support, which requires monetary and time resources. For sustainable application, the use of the instruments in the teams’ communication, transparent and regular analyses, ongoing training, peer support and networking of SOPC teams is necessary, so that fears can be reduced and the motivation and comfort of the professionals can be strengthened. It is key, that professionals experience the benefits for quality evaluation and especially for their daily work.