The Breast Cancer Patient Navigation Kit: Development and User Feedback

The development of supportive care for cancer patients has been shown to have a positive impact on both mortality rates and many aspects of life after cancer, particularly in young women. Meanwhile, there are still numerous inequalities in terms of cancer mortalities and quality of life among cancer survivors in France. The processes leading to unequal access to supportive care services, and the impact this has on the post-treatment period, have been poorly documented, however. The goal of this study was to understand the barriers to using supportive care services among young women breast cancer survivors under the age of 50 and to find out how this can contribute to inequalities. Thirty-six young breast cancer survivors, one third of which deemed socially deprived, were interviewed using a qualitative, inductive approach at two comprehensive care centres in France. Our findings primarily show that there are still a number of barriers to accessing supportive care for a large number of patients. The way information about supportive services is delivered is a major cause of inequalities in the use of these services. The guidance provided does not take into account either the patients' needs or their capacity to integrate the information and anticipate problems. Certain specific post-treatment issues have yet to be addressed. Some systemic barriers could be lifted by changing the way information on supportive care services is currently organised and thereby prevent the survivorship plans now being implemented in cancer care settings from reinforcing health inequalities.

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Inequalities and Barriers to the Use of Supportive Care Among Young Breast Cancer Survivors: a Qualitative Understanding

Regnier

Querre²,

Chen

et al. 2016

J Canc Educ

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The Influence of Health Literacy on Information Needs Among Women Newly Diagnosed With Breast Cancer, With Special Reference to Employment Status

Schmidt

Kowalski

Pfaff

et al. 2015

Journal of Health Communication

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Breast cancer is the most frequent type of malignancy among women throughout Germany. The present analysis aimed to identify information needs and aspects of health literacy in women of working age newly diagnosed with breast cancer. PIAT is a prospective multicenter cohort study in which patients were asked about their information needs at 3 assessment points: postoperatively, after 10 weeks, and after 40 weeks. The present analysis includes data from 1,344 female patients after the first assessment point. In addition to descriptive analyses, logistic regression analyses were calculated. Results of the study show that, in addition to sociodemographic characteristics, the level of health literacy and the employment status of the women who responded to the inquiry influence specific unmet information needs. Most frequently mentioned unmet information needs relate to supplementary naturopathy, nutrition, health-promoting measures, and working during breast cancer. Patients with breast cancer are often provided with large amounts of information during their hospital stay indicating this information is not targeted to patient needs and may be overwhelming. The results show that information on everyday life needs such as supplementary naturopathy were important for the sample newly diagnosed with breast cancer. Employed women in particular have questions regarding working during cancer or tax relief.

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Addressing cancer survivors’ information needs and satisfaction: a systematic review of potential intervention components for survivors with a rare cancer type

Farrugia,

Duijts,

Wilson

et al. 2024

Orphanet J Rare Dis

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Objective Providing current, evidence-based information to cancer survivors is critical for informed decision making. People diagnosed with a rare cancer report higher unmet information needs compared to common cancer survivors. However, interventions providing informational support for rare cancers are limited. Therefore, the aims of this systematic review were to identify and synthesise interventions decreasing survivors’ information needs and/or improving satisfaction with information, and to explore potential components to be included in an intervention for rare cancer survivors. Methods Searches were conducted in PubMed, CINAHL, Embase, PsycINFO and the Cochrane Library. Studies reporting an intervention targeting information needs and/or patient satisfaction with information in survivors of any cancer type were included. Data were extracted, a quality assessment performed and findings were synthesised. Results A total of 7012 studies were identified and 34 were included in the review. Five studies targeted patients with a rare cancer type; the remaining studies included common cancer survivors. Interventions varied in relation to the mode of information provision, timing of intervention delivery, and the intervention provider. The most promising interventions included face-to-face communication and written material and were delivered by a nurse. All rare cancer studies were designed around a web-based program, but none of them improved outcomes. Conclusions Interventions targeting information needs and/or patient satisfaction with information in rare cancer survivors are lacking. Future studies should focus on this underserved group, and successful aspects of interventions for common cancer survivors should be considered for inclusion when designing an intervention for rare cancer survivors.

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The Breast Cancer Patient Navigation Kit: Development and User Feedback

Cited by 3 publications

References 16 publications

Inequalities and Barriers to the Use of Supportive Care Among Young Breast Cancer Survivors: a Qualitative Understanding

Inequalities and Barriers to the Use of Supportive Care Among Young Breast Cancer Survivors: a Qualitative Understanding

The Influence of Health Literacy on Information Needs Among Women Newly Diagnosed With Breast Cancer, With Special Reference to Employment Status

Addressing cancer survivors’ information needs and satisfaction: a systematic review of potential intervention components for survivors with a rare cancer type

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