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Dominik Ose,1,2 Eva C Winkler,3 Sarah Berger,1 Ines Baudendistel,1 Martina Kamradt,1 Felicitas Eckrich,1 Joachim Szecsenyi1 1Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany; 2Department of Population Health, Health System Innovation and Research, University of Utah, Salt Lake City, UT, USA; 3Program for Ethics and Patient-oriented Care in Oncology, National Centre for Tumour Diseases, University Hospital Heidelberg, Heidelberg, Germany Purpose: Given the inherent complexity of cancer care, in which personal, social, and clinical aspects accumulate and interact over time, self-management support need to become more comprehensive. This study has the following two aims: 1) to analyze and describe the complexity of individual patient situations and 2) to analyze and describe already established self-management strategies of patients to handle this complexity.Methods: A qualitative study was conducted. Ten focus groups were performed collecting perspectives of the following three user groups: patients with colorectal cancer (n=12) and representatives from support groups (n=2), physicians (n=17), and other health care professionals (HCPs; n=16). Data were analyzed using qualitative content analysis.Results: The results showed that cancer patients are struggling with the complexity of their individual situations characterized by the 1) “complexity of disease”, 2) “complexity of care”, and 3) “complexity of treatment-related data”. To deal with these multifaceted situations, patients have established several individual strategies. These strategies are “proactive demanding” (eg, to get support and guidance or a meaningful dialog with the doctor), “proactive behavior” (eg, preparation of visits), and “proactive data management” (eg, in terms of merging treatment-related data and to disseminate these to their health care providers).Conclusion: Patients with colorectal cancer have to handle a high complexity of individual situations within treatment and care of their disease. Private and social challenges have a culminating effect. This complexity increases as patients experience a longer duration of treatment and follow-up as patients have to handle a significantly higher amount of data over time. Self-management support should focus more on the individual complexity in a patient’s life. This includes assisting patients with strategies that have already been established by themselves (like preparation of visits). Keywords: self-management, health care utilization, colorectal cancer, chronic care, health services research, complexity |
