Difficulties in Care and Unmet Needs from the Perspective of Patients with Lung Cancer and Stroke – A Qualitative Study in Germany

Hella Fügemann,1,2 Kathrin Gödde,1,2 Ute Goerling,3 Jacqueline Müller-Nordhorn,4 Verena Mauckisch,5 Bob Siegerink,6 Nina Rieckmann,2 Christine Holmberg1,2,7 1Institute of Social Medicine and Epidemiology, Brandenburg Medical School Theodor Fontane, Brandenburg an der Havel, Germany; 2Institute of Public Health, Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität Zu Berlin, and Berlin Institute of Health, Berlin, Germany; 3Charité Comprehensive Cancer Center, Charité – Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany; 4Bayerisches Krebsregister, Bayerisches Landesamt für Gesundheit und Lebensmittelsicherheit, Nürnberg, Germany; 5Department of Respiratory Medicine and Critical Care Medicine with Sleep Medicine, Charite - Universitaetsmedizin Berlin, corporate member of Freie Universitaet Berlin, Humboldt-Universitaet zu Berlin, and Berlin Institute of Health, Berlin, Germany; 6Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, the Netherlands; 7Faculty of Health Sciences, Joint Faculty of the Brandenburg University of Technology Cottbus – Senftenberg, The Brandenburg Medical School Theodor Fontane and the University of Potsdam, Potsdam, GermanyCorrespondence: Hella Fügemann, Institut für Sozialmedizin und Epidemiologie, Medizinische Hochschule Brandenburg Theodor Fontane, Hochstr 15, Brandenburg an der Havel, 14770, Germany, Email [email protected]: Organizing healthcare becomes ever more complex for people with chronic conditions. Additionally, a distinct separation of inpatient and outpatient care makes it even more difficult to provide coordinated and continuous care across sectors in Germany. Our interview study aimed to identify difficulties and unmet needs along the care continuum of patients with lung cancer and stroke in Germany.Methods: Data were collected by qualitative interviews. A total of 40 participants with lung cancer (n=20) and stroke (n=20) were interviewed in the metropolitan region of Berlin, Germany. Data were interpreted through thematic analysis.Results: We identified five main categories of difficulties and unmet needs: 1. Bureaucracy, 2. Unmet information needs, 3. Feeling left alone, 4. Difficulties and unmet needs in healthcare institution settings, and 5. Psychological and emotional stress. Results of our study show a high overlap between the experienced difficulties of both groups of patients. These include, in particular, bureaucratic obstacles, the lack of detailed information, poor coordination of care, and the feeling of being alone with the disease and its consequences.Conclusion: Patients with complex care trajectories seem to have great need for coordinative, social, bureaucratic, and emotional support and these support topics are largely independent of the index disease. Hence, our research suggests that support offers focusing on social and coordination needs do not have to be disease-specific but can rather cover general needs of people with complex care situations.Keywords: lung cancer, stroke, patient experiences, qualitative research, complex care, unmet needs