Feasibility of Synchronous Online Focus Groups of Rural Breast Cancer Survivors on Web-Based Distress Self-Management

The Commission on Cancer’s standard 3.3 represents a paradigm shift in the care of cancer survivors, recommending that survivors receive a treatment summary and survivorship care plan (SCPs). A focus on older breast cancer survivors is needed, as they are the majority of the breast cancer population and their experiences and perspectives of SCPs is limited in the literature. This pilot study utilized a mixed methods approach (focus groups and self-report questionnaire data) to gather information on older (≥65 years) breast cancer survivors’ perspectives of their SCPs, cancer survivorship, and communication with their health-care providers. The questionnaire was completed individually by the participants prior to the focus group and contained items on basic demographics and their health status following cancer treatment. The focus groups indicated that only a minority of women actually developed a SCP. Those who developed a SCP in collaboration with their providers valued the personal care and attention received. However, some participants reported poor communication with their providers and within their health-care team, resulting in frustration and confusion. Participants’ suggestions for ideal SCPs included better education and personalization, particularly in appropriate nutrition and exercise, and managing side effects and comorbidities. Lastly, the women believed that additional long-term care resources, such as health coaches, were important in improving their survivorship. These findings provide insight into enhancing the content, communication, and application of SCPs to improve the survivorship experience of older breast cancer survivors.

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Young, Empowered and Strong: A Web-Based Education and Supportive Care Intervention for Young Women With Breast Cancer Across the Care Continuum

JCO Clinical Cancer Informatics ◽

10.1200/cci.21.00067 ◽

2021 ◽

pp. 933-943

Author(s):

Tal Sella ◽

Craig Snow ◽

Hannah Freeman ◽

Philip D. Poorvu ◽

Shoshana M. Rosenberg ◽

...

Keyword(s):

Breast Cancer ◽

Young Women ◽

Breast Cancer Survivors ◽

Metastatic Breast ◽

Patient Reported Outcome ◽

Self Management ◽

Semistructured Interview ◽

Web Based ◽

Care Continuum ◽

Patient Reported

PURPOSE Patient-centered digital interventions may help empower young women to self-manage symptoms and psychosocial concerns and support informational needs often unaddressed in clinic. METHODS Young, Empowered and Strong (YES) is an interactive web-based intervention designed to engage young women with personalized education and symptom self-management resources on the basis of responses to patient-reported outcome–based questionnaires. We piloted YES among young women (< 45 years) with newly diagnosed early breast cancer (EBC) or metastatic breast cancer (MBC) and breast cancer survivors (BCSs). Assessments were deployed weekly (EBC and MBC) or every 4 weeks (BCSs) over 12 weeks. At study completion, use, feasibility, and acceptability of YES were evaluated via a survey and semistructured interview. RESULTS Thirty women were enrolled between April and June 2019: 10 EBC, 10 BCSs, and 10 MBC. The mean age at diagnosis and enrollment was 36 (range 25-44) and 39 (range 31-44) years, respectively. Most participants were actively treated (96%, 27 of 28) with endocrine therapy (54%, 15 of 28) or chemotherapy (43%, 12 of 28). Overall, 61% (180 of 296) of assessments were completed (EBC: 70%, BCSs: 63%, and MBC: 52%). Of 37 patient-reported outcome and need domains, the most frequently triggered were sexual health (EBC: 90%, BCSs: 90%, and MBC: 90%), anxiety (EBC: 80%, BCSs: 90%, and MBC: 90%), stress and mindfulness (EBC: 80%, BCSs: 90%, and MBC: 90%), and fatigue (EBC: 90%, BCSs: 80%, and MBC: 90%). On postpilot survey, participants reported that YES helped them to learn (50%, 7 of 14), monitor (43%, 6 of 14), and manage (57%, 8 of 14) their symptoms. CONCLUSION YES is a feasible and acceptable digital intervention to support young women across the breast cancer care continuum. The nearly universal triggering of sexual and mental health needs suggests suboptimal management in the clinical setting and the potential for self-management through a digital platform.

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CO-creating and adapting a self-management program for breast cancer Survivors integrated in the clinical pathway of breast centers in Switzerland (COSS pilot study)

European Journal of Cancer ◽

10.1016/s0959-8049(18)30338-1 ◽

2018 ◽

Vol 92 ◽

pp. S37

Author(s):

F. Schmidt ◽

K. Ribi Brega ◽

J. Haslbeck ◽

C. Urech ◽

K. Holm ◽

...

Keyword(s):

Breast Cancer ◽

Pilot Study ◽

Cancer Survivors ◽

Clinical Pathway ◽

Breast Cancer Survivors ◽

Management Program ◽

Self Management ◽

Breast Centers

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Adapting a peer-led self-management program for breast cancer survivors in Switzerland using a co-creative approach

Patient Education and Counseling ◽

10.1016/j.pec.2020.03.028 ◽

2020 ◽

Vol 103 (9) ◽

pp. 1780-1789

Author(s):

Franziska Schmidt ◽

Karin Ribi ◽

Joerg Haslbeck ◽

Corinne Urech ◽

Karin Holm ◽

...

Keyword(s):

Breast Cancer ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Management Program ◽

Self Management

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Evaluation of a Web-Based Program for African American Young Breast Cancer Survivors

American Journal of Preventive Medicine ◽

10.1016/j.amepre.2015.09.003 ◽

2015 ◽

Vol 49 (6) ◽

pp. S543-S549 ◽

Cited By ~ 16

Author(s):

Ashani Johnson-Turbes ◽

Dara Schlueter ◽

Angela R. Moore ◽

Natasha D. Buchanan ◽

Temeika L. Fairley

Keyword(s):

Breast Cancer ◽

African American ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Web Based ◽

Young Breast Cancer

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Oncology care providers’ awareness and practice related to physical activity promotion for breast cancer survivors and barriers and facilitators to such promotion: a nationwide cross-sectional web-based survey

Supportive Care in Cancer ◽

10.1007/s00520-021-06706-8 ◽

2021 ◽

Author(s):

Yoichi Shimizu ◽

Katsunori Tsuji ◽

Eisuke Ochi ◽

Ryo Okubo ◽

Aya Kuchiba ◽

...

Keyword(s):

Breast Cancer ◽

Physical Activity ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Information Provision ◽

Care Providers ◽

Physical Activity Recommendation ◽

Web Based ◽

Oncology Care ◽

Activity Information

Abstract Purpose A known barrier to getting breast cancer survivors (BCSs) to engage in habitual exercise is a lack of information on recommended physical activity levels provided to them by oncology care providers (OCPs). However, the actual situation in Japan remains unclear. This study sought to clarify OCPs’ awareness and practice related to Japan’s physical activity recommendation for BCSs and to ascertain barriers to routine information provision. Methods We conducted a web-based survey involving members of the Japanese Breast Cancer Society (JBCS) and the Japanese Association of Cancer Rehabilitation between Dec. 2018 and Feb. 2019. Results Of 10,830 members, 1,029 (9.5%) responded. Only 19.1% were aware of the details of the JBCS physical activity recommendation, and only 21.2% routinely provided physical activity information to BCSs. Factors related to being aware of the recommendation details were 1) availability of the guidelines, 2) experience reading relevant parts of the guidelines, and 3) involvement in multidisciplinary team case meetings. Barriers to routine information provision were 1) absence of perceived work responsibility, 2) underestimation of survivors’ needs, 3) lack of resources, 4) lack of self-efficacy about the recommendation, and 5) poor knowledge of the recommendation. Conclusions Only one fifth of the OCPs routinely provided physical activity information. Barriers to provision were poor awareness, self-efficacy, and attitudes and unavailable resources. The physical activity recommendation needs to be disseminated to all OCPs and an information delivery system needs to be established for BCSs to receive appropriate information and support to promote their engagement in habitual physical activity.

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