Florian Pohlig1, Ulrich Lenze2, Heinrich M L Muhlhofer2, Florian W Lenze2,3, Johannes Schauwecker2, Carolin Knebel2, Tanja Zimmermann4, Peter Herschbach5. 1. Department of Orthopedic Surgery, Rechts der Isar Hospital, Technical University Munich, Munich, Germany Florian.Pohlig@mri.tum.de. 2. Department of Orthopedic Surgery, Rechts der Isar Hospital, Technical University Munich, Munich, Germany. 3. Department of Traumatology, Traunstein HospitaI, Traunstein, Germany. 4. Department of Psychosomatic Medicine and Psychotherapy, Medical University Hannover, Hannover, Germany. 5. Roman-Herzog-Comprehensive Cancer Center, Department of Psychosomatic Medicine and Psychotherapy, Rechts der Isar Hospital, Technical University Munich, Munich, Germany.
Abstract
BACKGROUND: Psychosocial distress can be frequently observed in patients with sarcoma, depicting a relevant clinical problem. However, prospective data collection on psychosocial distress in patients with rare tumors is often time-consuming. In this context, social media such as Facebook can serve as a potential platform to expand research. The aim of this study was to assess the feasibility of psychosocial distress screening in patients with osteosarcoma and Ewing's sarcoma via social media. MATERIALS AND METHODS: For this study an online questionnaire including general information and self-assessment distress measurement tools for patients and parents was created. The link to the questionnaire was then posted on the main page of the two largest disease-specific Facebook communities on osteosarcoma and Ewing's sarcoma. RESULTS: Within 2 months, 28 patients and 58 parents of patients were enrolled. All patients with osteosarcoma and Ewing's sarcoma, as well as the majority of parental caregivers of such patients, showed relevant psychosocial distress levels. CONCLUSION: Crowdsourcing via disease-specific patient communities on Facebook is feasible and provides great potential for acquisition of medical data of rare diseases. Copyright
BACKGROUND:Psychosocial distress can be frequently observed in patients with sarcoma, depicting a relevant clinical problem. However, prospective data collection on psychosocial distress in patients with rare tumors is often time-consuming. In this context, social media such as Facebook can serve as a potential platform to expand research. The aim of this study was to assess the feasibility of psychosocial distress screening in patients with osteosarcoma and Ewing's sarcoma via social media. MATERIALS AND METHODS: For this study an online questionnaire including general information and self-assessment distress measurement tools for patients and parents was created. The link to the questionnaire was then posted on the main page of the two largest disease-specific Facebook communities on osteosarcoma and Ewing's sarcoma. RESULTS: Within 2 months, 28 patients and 58 parents of patients were enrolled. All patients with osteosarcoma and Ewing's sarcoma, as well as the majority of parental caregivers of such patients, showed relevant psychosocial distress levels. CONCLUSION: Crowdsourcing via disease-specific patient communities on Facebook is feasible and provides great potential for acquisition of medical data of rare diseases. Copyright
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