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Bruetting, Julia; Bergmann, Maike; Garzarolli, Marlene; Rauschenberg, Ricarda; Weber, Christiane; Berking, Carola; Tilgen, Wolfgang; Schadendorf, Dirk and Meier, Friedegund (2019): Unmet information needs of patients with melanoma in Germany. In: Melanoma Research, Vol. 29, No. 2: pp. 196-204

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Abstract

There is a scarcity of available data on unmet information needs (UINs) of melanoma patients (MPs) from Germany and of MPs with clinical stage IV. In a multicenter cross-sectional survey, we explored the UINs of 529 MPs by applying a standardized questionnaire. Subgroup differences in scope and contents of UINs were determined by univariate analyses. Predictors of the presence of UINs were identified by binary logistic regression. Overall, 55% of MPs reported UINs. Most MPs felt poorly or not informed about psychosocial support (24-31%). In MPs currently receiving medical treatment [odds ratio (OR): 1.9;P=0.017], MPs aging of at least 55 years (OR: 1.7;P=0.029), and in MPs who generally had a high need for information on their condition (OR: 2.4;P=0.001), the presence of UINs was significantly more likely than in post-treatment MPs, MPs more than 55 years of age, and those whose general information need was low. Most UINs concerned treatment-related information and were reported by MPs with tumor progression. Presence and scope of UINs did not differ significantly between metastatic and nonmetastatic MPs (57 vs. 53%;P=0.436). We highlighted differences in the presence, scope, and contents of UINs between MP subgroups, which should be considered when educating them in medical consultations and providing information via media. In particular, MPs felt insufficiently informed about psychosocial support and desired more treatment information.

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