People with rare diseases often face challenges, due to the low prevalence and the resulting lack of knowledge of their healthcare providers. Communication processes in this context are mainly affected by the role behavior of both the patient and provider. The present study showed the relevance of the provider's ability to acknowledge the active role of the patient as an informed, involved and interactive partner in the treatment process. However, allowing the patient to control therapy may require a change of mind-set with some long-standing traditional roles in healthcare.

BackgroundA rare disease is a pattern of symptoms that afflicts less than five in 10,000 patients. However, as about 6,000 different rare disease patterns exist, they still have significant epidemiological relevance. We focus on rare diseases that affect multiple organs and thus demand that multidisciplinary healthcare professionals (HCPs) work together. In this context, standardized healthcare processes and concepts are mainly lacking, and a deficit of knowledge induces uncertainty and ambiguity. As such, individualized solutions for each patient are needed. This necessitates an intensive level of innovative individual behavior and thus, adequate idea generation. The final implementation of new healthcare concepts requires the integration of the expertise of all healthcare team members, including that of the patients. Therefore, knowledge sharing between HCPs and shared decision making between HCPs and patients are important. The objective of this study is to assess the contribution of shared communication and decision-making processes in patient-centered healthcare teams to the generation of innovative concepts and consequently to improvements in patient satisfaction.MethodsA theoretical framework covering interaction processes and explorative outcomes, and using patient satisfaction as a measure for operational performance, was developed based on healthcare management, innovation, and social science literature. This theoretical framework forms the basis for a three-phase, mixed-method study. Exploratory phase I will first involve collecting qualitative data to detect central interaction barriers within healthcare teams. The results are related back to theory, and testable hypotheses will be derived. Phase II then comprises the testing of hypotheses through a quantitative survey of patients and their HCPs in six different rare disease patterns. For each of the six diseases, the sample should comprise an average of 30 patients with six HCP per patient-centered healthcare team. Finally, in phase III, qualitative data will be generated via semi-structured telephone interviews with patients to gain a deeper understanding of the communication processes and initiatives that generate innovative solutions.DiscussionThe findings of this proposed study will help to elucidate the necessity of individualized innovative solutions for patients with rare diseases. Therefore, this study will pinpoint the primary interaction and communication processes in multidisciplinary teams, as well as the required interplay between exploratory outcomes and operational performance. Hence, this study will provide healthcare institutions and HCPs with results and information essential for elaborating and implementing individual care solutions through the establishment of appropriate interaction and communication structures and processes within patient-centered healthcare teams.

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Diversität der Krankheitsmuster erfordern die Inanspruchnahme einer Vielzahl unterschiedlicher medizinischer Professionen, die sektorüber-greifend kooperieren müssen, um ganzheitliche Behandlungs-und Therapieprozesse eff ektiv abbilden zu können. Aufgrund der VersorgungsZusammenfassung ▼ Einleitung: Die Versorgung von Patienten mit seltenen Erkrankungen geht mit vielen Herausforderungen, darunter einer erhöhten Koordinationskomplexität, einher. In einer explorativen Fallstudie sind die Koordinationsprobleme im Versorgungsnetzwerk für respiratorische Insuffizienz im Zuge von ALS und Duchenne untersucht worden. Methoden: In qualitativen, leitfadenbasierten Interviews wurden die Versorgungsstrukturen von 3 Patienten erhoben und inhaltsanalytisch ausgewertet. Ergebnisse: Im untersuchten Netzwerk bestehen parallele Strukturen: Während die operativen, patientenbezogenen Interaktionen die Patientenversorgung sicherstellen, fi nden zusätzlich Lernprozesse statt, in denen Ideen für neue Behandlungskonzepte generiert werden; es entwickeln sich kontextspezifi sche Interaktionsmuster. Ursachen für Koordinationsprobleme sind sowohl auf Mikro-, Meso-und Makro-, als auch auf indikationsbezogener Ebene identifi ziert worden und umfassen u. a. die niedrige Krankheitsprävalenz und die mangelnde Qualifi kation der Versorger. Schlussfolgerung: Die Ergebnisse unterstreichen die Notwendigkeit, innovative Versorgungsformen zu schaff en. Mögliche Lösungsansätze reichen dabei von der Initiierung interdisziplinärer Arbeitskreise über die Erstellung sektorübergrei-fender Versorgungsleitlinien bis hin zur Implementierung von Qualifi zierungsmaßnahmen.

ing 95.51 Ϯ 10.09. Mean rate of own health on EQ-VAS was 80.30 Ϯ 15.21 and mean EQ-5D index, based on Polish TTO value set, was 0.94 Ϯ 0.07 (in the range from -0.523 to 1). Students of 1 st year reported lowest QoL independently of the measure used: EQ-VAS 76.4 Ϯ 17.72 and EQ-index 0.92 Ϯ 0.07. CONCLUSIONS: Generic questionnaires used in the survey are sensitive enough for measuring quality of life in young and relatively healthy population. Students of 1 st year reported lowest quality of life with all questionnaires. The survey needs to be continued in next years.