Challenges of Interdisciplinary Collaboration in the Management of Rare Diseases

Introduction: The care of patients with rare diseases is associated with many challenges, in particular those associated with high coordination complexity. In an explorative case study in a health-care network for patients with respiratory insufficiency, we have investigated the types and causes of coordination problems. Methods: We conducted semi-structured, qualitative interviews with 3 patients and their health-care providers. The evaluation of the views expressed in these interviews was worked up by applying qualitative content analysis. Results: The network examined exhibits parallel structures. While the patient-centred interactions are ensuring patient care, learning processes among the health-care professionals take place and ideas for improved treatment are developed. Depending on the purpose, context-specific interaction patterns are evolving. Causes for coordination problems have been identified at the micro-, meso-, macro-and the indication-based levels, e. g., the low prevalence of the diseases and the lacking qualifications of the healthcare professionals. Conclusion: Our results demonstrate the need for creating innovative health-care structures. Potential solutions range from the initiation of interdisciplinary working groups and cross-sectoral disease management guidelines tjhrough to the implementation of qualification measures.