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Psycho-Oncology
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Unmet information needs of men with breast cancer and health professionals

Authors: Tom I. Bootsma; Anouk Pijpe; Petra Duijveman; Arjen J. Witkamp; Eveline M. A. Bleiker; Eveline M. A. Bleiker; Pernilla C. Scheelings;

Unmet information needs of men with breast cancer and health professionals

Abstract

AbstractObjectiveMale breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male‐specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals.MethodsDutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper‐based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care.ResultsIn three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow‐up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC‐related information, specifically: patient information, anti‐hormonal therapy, genetic testing, research, and psychosocial issues.ConclusionsUnmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user‐centered design to develop an informative website, www.mannenmetborstkanker.nl.

Keywords

Adult, Male, Quality of Life/psychology, information needs, Health Personnel, Information Seeking Behavior, Experimental and Cognitive Psychology, male breast cancer, Health Services Needs and Demand/statistics & numerical data, Breast Neoplasms, Male, Patient Education as Topic, health professionals, Surveys and Questionnaires, Adaptation, Psychological, Breast Neoplasms, Male/psychology, Journal Article, cancer, Humans, mixed-methods, Health Services Needs and Demand, Patient Education as Topic/methods, Research Support, Non-U.S. Gov't, Focus Groups, Middle Aged, Psychiatry and Mental health, Oncology, oncology, Papers, Quality of Life, website

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    popularity
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
21
Top 10%
Average
Top 10%
Green
hybrid