[Patient-reported outcomes and quality of care in specialized palliative home care: a nationwide, prospective longitudinal cohort trial]

Abstract

Introduction: Since 2007, patients receiving palliative care have been entitled to specialised outpatient palliative care (SAPV). Until now, the quality of care of the SAPV was only regionally focussed or in relation to individual SAPV teams. A nationwide analysis of outcome quality is still awaited. The organisation and design of structures and processes vary greatly from region to region, which complicates a comparative assessment of implementation. One way to measure the quality of the heterogeneous structures and processes is to collect patient-reported outcomes. Here, it is possible to use symptom burden, quality of care and patient satisfaction with SAPV care, since patients' quality of life is a central focus of SAPV care. This article is part of the research project SAVOIR, which is funded by the G-BA Innovation Fund.

Methods: For this prospective longitudinal survey of the outcome quality of SAPV, structured data were collected at two measurement points (t₁ and t₂ [4-10 days after t₁]). A nationwide, representative sample of SAPV teams was targeted. These teams performed consecutive recruitment of patients included in SAPV. Two questionnaire instruments were used: the IPOS (Integrated Palliative Outcome Scale) at t₁ and t₂, and the QUAPS (quality control in specialized palliative home care) questionnaire at t₂. Patient-reported outcomes measured improvement in symptom burden, patient satisfaction, and quality of care from the patient perspective. In addition, an exploratory stepwise regression analysis of factors associated with satisfaction was conducted.

Results: 42 SAPV teams agreed to participate in the study. They recruited a total of 964 patients at measurement time t₁ (t₂: 690 patients). The analyses show that the number and intensity of symptoms from the patient perspective decreased significantly during the course of SAPV treatment, especially pain, gastrointestinal symptoms, but also psychological complaints. 74.7 % of the patients reported a high level of satisfaction with SAPV. Also, the quality of care was considered to be high by the patients. Exploratively, five factors were extracted that explain 55 % of the satisfaction with SAPV: respect for the patient's decision, quality of communication, support with practical problems, and referral to care measures as well as symptom relief between the two measurement points.

Conclusions: The SAPV patients recruited from a total of nine KV regions reported a reduced symptom burden and a high level of satisfaction with SAPV and rated the quality of care provided by SAPV as high.

Keywords: Ergebnisqualität; Longitudinal research; Längsschnitt; Patient-reported outcomes; Quality of care; Specialized palliative home care; Spezialisierte Ambulante Palliativversorgung; Symptom development; Symptomverlauf.