Unmet information needs of patients with melanoma in Germany

Research output: Contribution to journalResearch articleContributedpeer-review

Contributors

  • Julia Brutting - , University Hospital Carl Gustav Carus Dresden (Author)
  • Maike Bergmann - , University Hospital Carl Gustav Carus Dresden (Author)
  • Marlene Garzarolli - , Department of Dermatology, University Hospital Carl Gustav Carus Dresden (Author)
  • Ricarda Rauschenberg - , Department of Dermatology, University Hospital Carl Gustav Carus Dresden (Author)
  • Christiane Weber - , Arbeitsgemeinschaft Dermatologische Onkologie (ADO) (Author)
  • Carola Berking - , Ludwig Maximilian University of Munich (Author)
  • Wolfgang Tilgen - , Steering Group (Author)
  • Dirk Schadendorf - , Steering Group, University of Duisburg-Essen (Author)
  • Friedegund Meier - , Department of Dermatology, University Hospital Carl Gustav Carus Dresden (Author)

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.

Details

Original languageEnglish
Pages (from-to)196-204
Number of pages9
JournalMelanoma research
Volume29
Issue number2
Publication statusPublished - 1 Apr 2019
Peer-reviewedYes

External IDs

PubMed 29787460
ORCID /0009-0001-4054-4024/work/155291687
ORCID /0000-0003-4340-9706/work/155292313

Keywords

ASJC Scopus subject areas

Keywords

  • cross-sectional study, information resources, information-seeking behavior, melanoma, multicenter study, needs assessment, patient education