IT-based Psychosocial Distress Screening in Patients with Sarcoma and Parental Caregivers via Disease-specific Online Social Media Communities
| Autor: | Johannes Schauwecker, U. Lenze, Heinrich M L Muhlhofer, Florian W Lenze, F. Pohlig, Tanja Zimmermann, Peter Herschbach, Carolin Knebel |
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| Rok vydání: | 2017 |
| Předmět: |
Adult
Male Cancer Research medicine.medical_specialty Adolescent Psycho-oncology Context (language use) Sarcoma Ewing Computer-assisted web interviewing Online Systems General Biochemistry Genetics and Molecular Biology Young Adult 03 medical and health sciences 0302 clinical medicine Surveys and Questionnaires medicine Humans Mass Screening Social media 030212 general & internal medicine Child Psychiatry Pharmacology Osteosarcoma business.industry Mental Disorders Ewing's sarcoma Sarcoma Middle Aged medicine.disease ddc Distress Caregivers 030220 oncology & carcinogenesis Family medicine Female business Social Media Psychosocial Research Article |
| Zdroj: | In Vivo. 31:443-450 |
| ISSN: | 1791-7549 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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