Patient-reported outcomes and experiences in a regional heart failure care network in northern Germany: a mixed-methods study

Background Chronic heart failure (HF) is associated with high morbidity and mortality, necessitating well-coordinated, guideline-based care. In XXX, Germany, a regional HF care network based on cross-sector collaboration between a university heart centre, general practitioners, cardiologists, and hospitals was implemented. This study examined patient-reported outcomes and experiences within the network. Methods A non-interventional, exploratory pre-post study was conducted as part of routine care. HF-Patients referred from network partners to the university heart centre were invited to participate. Participants completed the Kansas City Cardiomyopathy Questionnaire (KCCQ-23) at baseline (T1) and after 6 months (T2). At T2, a brief, self-developed questionnaire assessed the perceived network-effects on care coordination. In addition, semi-structured telephone interviews were conducted with a subsample of patients. Quantitative data were analysed descriptively and using paired t-tests, while interviews were analysed using qualitative content analysis. Results Seventy-five patients (74.7% male, mean age 65 years) were enrolled, of whom 72 completed the KCCQ at T1 and 40 at T2. Mean scores across all KCCQ domains indicated a moderate to good health-related quality of life at both time points, with small, non-significant improvements observed over six months (e.g., mean clinical summary score T1: 63.69, SD: 25.08, n = 72; T2: 71.15, SD: 23.79, n = 40, p = 0.16). Higher NYHA class and older age were associated with poorer KCCQ scores. Women reported more symptoms and a worse clinical status at baseline. Most respondents at T2 perceived the care process as well coordinated. Ten qualitative interviews revealed high acceptance of the network, perceived benefits of having a direct contact person, and better information, but also some burdens. Most patients considered the role of HF nurses as central contacts valuable. Conclusions In this regional HF network, health-related quality of life remained stable at a moderate to good level over six months, while patients reported high satisfaction and perceived improvements in coordination and information flow. These results suggest that a cross-sectoral HF network is acceptable and useful from a patient perspective. However, there is a need to strengthen communication about the network, clarify responsibilities, and incorporate patient-specific needs, such as more flexible appointment times, to further enhance patient-centred care.