Unmet information needs of men with breast cancer and health professionals
Bootsma, Tom I; Duijveman, Petra; Pijpe, Anouk; Scheelings, Pernilla C; Witkamp, Arjen J; Bleiker, Eveline M A
(2020) Psycho-Oncology, volume 29, issue 5, pp. 851 - 860
(Article)
Abstract
OBJECTIVE: Male 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
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patients and (b) health professionals. METHODS: Dutch 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. RESULTS: In 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. CONCLUSIONS: Unmet 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.
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Keywords: Adaptation, Psychological, Adult, Breast Neoplasms, Male/psychology, Focus Groups, Health Personnel, Health Services Needs and Demand/statistics & numerical data, Humans, Information Seeking Behavior, Male, Middle Aged, Patient Education as Topic/methods, Quality of Life/psychology, Surveys and Questionnaires, health professionals, website, male breast cancer, oncology, mixed-methods, cancer, information needs, Experimental and Cognitive Psychology, Psychiatry and Mental health, Oncology, Research Support, Non-U.S. Gov't, Journal Article
ISSN: 1057-9249
Publisher: John Wiley & Sons Inc.
Note: Funding Information: Special thanks to Dutch Breast Cancer Association (BVN), Tessa Lange, M.Sc., Stichting Kanker.nl, A. Elise van Leeuwen‐Stok, Ph.D., managing director Dutch Breast Cancer Research Group (BOOG), Suzanne Reitsma photo project “Replace he for She” and Dutch Male Breast Cancer Consortium (DMBCC) who participated in expert meetings at the start and during the project. The authors also thank the registration team of the Netherlands Comprehensive Cancer Organization (IKNL) for the collection of data for the Netherlands Cancer Registry as well as IKNL staff for scientific advice. The study was funded by Pink Ribbon, the Netherlands (Grant number: 214‐192). Funding Information: We thank all participants, including men treated for breast cancer, male patient advocates Dutch Breast Cancer Association (BVN), partners, health professionals, Dutch hospitals (Diakonessenhuis Utrecht/Zeist, St. Antonius Utrecht, ZGV Ede, St. Anna Geldrop, Slingeland Doetinchem, Zuwe Hofpoort Woerden, MCL Leeuwarden, Waterland Purmerend, CWZ Nijmegen, Berhoven Uden, Nijsmellinghe Drachten, Isala Zwolle, NWZ Alkmaar, CZE Eindhoven, ETZ Tilburg, VieCuri Medisch Centrum Venlo, Amphia Breda, OZG Delfzijl/Winschoten, UMCU Utrecht, MUMC Maastricht, and Netherlands Cancer Institute Amsterdam) treating MBC patients and professional associations (Regional Breast Cancer Networks of Netherlands Comprehensive Cancer Organization (IKNL), Netherlands Society of Plastic Surgery (NVPC), Dutch association for Physiotherapy in Lymphology and Oncology (NVFL), Dutch Association for Psycho-oncology (NVPO), Working group of Clinical Oncogenetics and Psychosocial Care working group of Dutch Clinical Genetics Society [(VKGN]). Special thanks to Dutch Breast Cancer Association (BVN), Tessa Lange, M.Sc., Stichting Kanker.nl, A. Elise van Leeuwen-Stok, Ph.D., managing director Dutch Breast Cancer Research Group (BOOG), Suzanne Reitsma photo project ?Replace he for She? and Dutch Male Breast Cancer Consortium (DMBCC) who participated in expert meetings at the start and during the project. The authors also thank the registration team of the Netherlands Comprehensive Cancer Organization (IKNL) for the collection of data for the Netherlands Cancer Registry as well as IKNL staff for scientific advice. The study was funded by Pink Ribbon, the Netherlands (Grant number: 214-192). Publisher Copyright: © 2020 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.
(Peer reviewed)
