title: [Challenges of interdisciplinary collaboration in the management of rare diseases].
abstract: 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.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.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 health-care professionals.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.
authors.affiliation: Technische Universität Berlin, Lehrstuhl für Technologie- und Innovationsmanagement. koczula@tu-berlin.de
authors.forename: G
authors.initials: G
authors.lastname: Koczula
authors.forename: K
authors.initials: K
authors.lastname: Budych
authors.forename: T M
authors.initials: TM
authors.lastname: Helms
authors.forename: C
authors.initials: C
authors.lastname: Schultz
mesh_terms: D003695:Delivery of Health Care / Q000458:organization & administration*; D005858:Germany; D006801:Humans; D009937:Organizational Objectives; D010348:Patient Care Team / Q000458:organization & administration*; D017060:Patient Satisfaction; D035583:Rare Diseases / Q000175:diagnosis* / Q000628:therapy*