Unmet information needs of patients with melanoma in Germany

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.

Assessment of the Quality, Understandability, and Reliability of YouTube Videos as a Source of Information on Basal Cell Carcinoma: Web-Based Analysis

“…However, the physician's time for a consultation is usually limited, while patients receive a large amount of medical and treatment-related information. Thus, patients may struggle with understanding all of the information provided and may subsequently feel inadequately informed [8]. While medical consultations and written information remain to be the most important sources of health information for patients, a steadily increasing number of patients are seeking health information on the internet [7,[9][10][11].…”

Development of the Melanoma Concerns Questionnaire (MCQ‐28); refinement of the EORTC QLQ‐MEL38 module

“…The promotion of psychosocial well‐being is not yet a routine standard of care for all patients at most cancer centres in the world, and much work remains to be done . In particular, melanoma patients still reportedly feel insufficiently informed about psychosocial support and desired more treatment information . The field of psycho‐oncology has seen the recent emergence of clinical practice guidelines .…”

Patients’ information needs and attitudes about post-treatment surveillance for colorectal cancer in the United States: a multi-perspective, mixed methods study

“…This approach recognises that patients differ in the amount of information they want. For instance, some patients want as much information as possible and others may be overwhelmed by too much information 21. Such interventions could help patients and clinicians be clear about the goals of care during post-treatment surveillance and recurrence, resulting in more patient-centred care.…”