Dataset Information

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

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 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.

SUBMITTER: Bootsma TI

PROVIDER: S-EPMC7317856 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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

Bootsma Tom I TI Duijveman Petra P Pijpe Anouk A Scheelings Pernilla C PC Witkamp Arjen J AJ Bleiker Eveline M A EMA

Psycho-oncology 20200224 5

<h4>Objective</h4>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.<h4>Methods</h4>Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to ...[more]

PMID: 32040237

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Project description:BackgroundPatient education materials given to breast cancer survivors may not be a good fit for their information needs. Needs may change over time, be forgotten, or be misreported, for a variety of reasons. An automated content analysis of survivors' postings to online health forums can identify expressed information needs over a span of time and be repeated regularly at low cost. Identifying these unmet needs can guide improvements to existing education materials and the creation of new resources.ObjectiveThe primary goals of this project are to assess the unmet information needs of breast cancer survivors from their own perspectives and to identify gaps between information needs and current education materials.MethodsThis approach employs computational methods for content modeling and supervised text classification to data from online health forums to identify explicit and implicit requests for health-related information. Potential gaps between needs and education materials are identified using techniques from information retrieval.ResultsWe provide a new taxonomy for the classification of sentences in online health forum data. 260 postings from two online health forums were selected, yielding 4179 sentences for coding. After annotation of data and training alternative one-versus-others classifiers, a random forest-based approach achieved F1 scores from 66% (Other, dataset2) to 90% (Medical, dataset1) on the primary information types. 136 expressions of need were used to generate queries to indexed education materials. Upon examination of the best two pages retrieved for each query, 12% (17/136) of queries were found to have relevant content by all coders, and 33% (45/136) were judged to have relevant content by at least one.ConclusionsText from online health forums can be analyzed effectively using automated methods. Our analysis confirms that breast cancer survivors have many information needs that are not covered by the written documents they typically receive, as our results suggest that at most a third of breast cancer survivors' questions would be addressed by the materials currently provided to them.

Project description:PurposePhysicians' awareness of their cancer patients' unmet needs is an essential element for providing effective treatment. This study investigated the accuracy of physicians' awareness of breast cancer survivors' unmet needs in Korea.MethodsA cross-sectional interview survey was performed among 106 physicians and 320 Korean breast cancer survivors. The Comprehensive Needs Assessment Tool was administered to physicians and cancer survivors after obtaining their written informed consent to participate. Data were analyzed using t-test, analysis of variance, and multiple regression analysis.ResultsThe level of unmet needs was highest in the hospital service domain (mean ± standard deviation: 2.19 ± 0.82), and the top-ranked unmet need item was "wished my doctor to be easy, specific, and honest in his/her explanation" (2.44 ± 0.93). Higher unmet needs were correlated with the presence of a genetic counseling clinic. They were not associated with age, sex, marital status, religion, department, working period, type of institution, number of staff, and number of operations. In multiple regression analysis, the presence of a genetic counseling clinic was associated with a higher level of recognition for psychological problems, social support, hospital service, and information and education needs. Physicians overestimated breast cancer survivors' unmet needs in all domains, compared to their self-reported unmet needs. The discordance in the perceived unmet needs was highest in the 'family/personal relationship problems' domain.ConclusionsPhysicians who treat Korean breast cancer survivors rated the level of unmet needs of breast cancer survivors as highest in the hospital service domain. The presence of a genetic counseling clinic in physicians' institutions was associated with a higher perception of survivors' unmet needs. Physicians overestimated the level of unmet needs in Korean breast cancer survivors. Efforts to reduce these discordances are needed to implement optimal survivorship care.

Project description:BackgroundThe COVID-19 pandemic severely affected everyday life and working conditions for most Europeans, particularly health care professionals (HCPs). Over the past 3 years, various policies have been implemented in various European countries. Studies have reported on the worsening of mental health, work-related stress, and helpful coping strategies. However, having a closer look is still necessary to gain more information on the psychosocial stressors and unmet needs of HCPs as well as nonmedical staff.ObjectiveThis study aimed to obtain quantitative information on job-related stressors of physicians and nurses and the coping strategies of HCPs and nonmedical staff at 2 periods of the COVID-19 pandemic. By further analyzing qualitative comments, we wanted to gain more information on the psychosocial stressors and unmet needs of HCPs as well as nonmedical staff on different levels of experience.MethodsA cross-sectional survey was conducted at 2 time points during the COVID-19 pandemic in several European countries. The first study period (T1) lasted between April 1 and June 20, 2020, and the second study period (T2) lasted between November 25, 2021, and February 28, 2022. On a quantitative level, we used a questionnaire on stressors for physicians and nurses and a questionnaire on coping strategies for HCPs and nonmedical staff. Quantitative data were descriptively analyzed for mean values and differences in stressors and coping strategies. Qualitative data of free-text boxes of HCPs and nonmedical staff were analyzed via thematic analysis to explore the experiences of the individuals.ResultsT1 comprised 609 participants, and T2 comprised 1398 participants. Overall, 296 participants made 438 qualitative comments. The uncertainty about when the pandemic would be controlled (T1: mean 2.28, SD 0.85; T2: mean 2.08, SD 0.90) and the fear of infecting the family (T1: mean 2.26, SD 0.98; T2: mean 2.02, SD 1.02) were the most severe stressors identified by physicians and nurses in both periods. Overall, the use of protective measures (T1: mean 2.66, SD 0.60; T2: mean 2.66, SD 0.60) and acquiring information about COVID-19 (T1: mean 2.29, SD 0.82; T2: mean 1.99, SD 0.89) were identified as the most common coping strategies for the entire study population. Using thematic analysis, we identified 8 themes of personal experiences on the micro, meso, and macro levels. Measures, working conditions, feelings and emotions, and social climate were frequently mentioned topics of the participants. In T1, feelings of isolation and uncertainty were prominent. In T2, feelings of exhaustion were expressed and vaccination was frequently discussed. Moreover, unmet psychosocial needs were identified.ConclusionsThere is a need for improvement in pandemic preparedness. Targeted vocational education measures and setting up of web-based mental health support could be useful to bridge gaps in psychosocial support needs in future crises.

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

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

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