Unmet information needs of men with breast cancer and health professionals. 2020

Tom I Bootsma, and Petra Duijveman, and Anouk Pijpe, and Pernilla C Scheelings, and Arjen J Witkamp, and Eveline M A Bleiker
Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.

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 patients and (b) health professionals. 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. 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. 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.

UI MeSH Term Description Entries
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D010353 Patient Education as Topic The teaching or training of patients concerning their own health needs. Education of Patients,Education, Patient,Patient Education
D011788 Quality of Life A generic concept reflecting concern with the modification and enhancement of life attributes, e.g., physical, political, moral, social environment as well as health and disease. HRQOL,Health-Related Quality Of Life,Life Quality,Health Related Quality Of Life
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D006282 Health Personnel Men and women working in the provision of health services, whether as individual practitioners or employees of health institutions and programs, whether or not professionally trained, and whether or not subject to public regulation. (From A Discursive Dictionary of Health Care, 1976) Health Care Professionals,Health Care Providers,Healthcare Providers,Healthcare Workers,Health Care Professional,Health Care Provider,Healthcare Provider,Healthcare Worker,Personnel, Health,Professional, Health Care,Provider, Health Care,Provider, Healthcare
D006301 Health Services Needs and Demand Health services required by a population or community as well as the health services that the population or community is able and willing to pay for. Health Services Needs,Needs,Needs and Demand, Health Services,Target Population,Health Services Need,Need, Health Services,Needs, Health Services,Population, Target,Populations, Target,Target Populations
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000223 Adaptation, Psychological A state of harmony between internal needs and external demands and the processes used in achieving this condition. (From APA Thesaurus of Psychological Index Terms, 8th ed). Behavior, Adaptive,Healthy Adaptation,Positive Adaptation,Psychological Recovery,Adaptation, Psychologic,Adjustment,Psychological Adaptation,Adaptation, Healthy,Adaptation, Positive,Adaptive Behavior,Adaptive Behaviors,Healthy Adaptations,Positive Adaptations,Psychologic Adaptation,Psychological Recoveries,Recovery, Psychological
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults

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