Online video support group pilot: Connecting young women diagnosed with breast cancer.

2015 ◽  
Vol 33 (28_suppl) ◽  
pp. 113-113
Author(s):  
Nicole Anne Taylor ◽  
Michelle Esser ◽  
Lori Atkinson ◽  
Medha Sutliff ◽  
Christina Stephens ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Support Groups ◽  
Support Group ◽  
Young Women ◽  
Program Implementation ◽  
Breast Cancer Survivors ◽  
Text Message ◽  
Metastatic Breast ◽  
Online Video ◽  
Young Breast Cancer

113 Background: Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. Young breast cancer survivors (YBCS) have a strong desire to connect in-person with other young survivors although location, timing of meetings and illness can deter in-person meetings. YSC sought to create a programmatic initiative where YBCS can connect online through video to “see” and support each other as well as reduce a sense of isolation. Methods: YSC initiated an 8 month online video support group pilot, with six groups meeting monthly. Two groups focused on specific populations: under age 30; and YBCS with metastatic breast cancer. A YSC staff person provided technology support at the start of each meeting. A paid facilitator or a peer volunteer led each meeting. A variety of technology platforms were tested, with “GoToMeeting” being the most reliable and the most commonly used. Results: Approximately 29 YBCS participated regularly across the six groups. Post-meeting and post-pilot evaluations were strongly positive. Eighty percent felt their concerns were addressed during the meetings and being able to “see” other YBCS helped to build community and add to the support received. The top reason for participating in the support group was to connect with other YBCS (70%). The topics of most interest were sex and intimacy and anxiety (tied) followed by discussion of side effects. A little over half of the respondents (54%) reported wanting a facilitator to lead the groups instead of a peer. Seventy-three percent said they would participate in online video support groups again if offered. A text message reminder of the upcoming support group meeting, received a day prior to the meeting, was preferred over email. Conclusions: YSC’s online video support group program is a viable and innovative method of connecting YBCS, by providing the opportunity to give and receive support in the comfort of their own home. This pilot provided YSC the information needed to move into a second stage of program implementation and evaluation.

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

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.

Impact of Young and Strong on physical activity in young breast cancer survivors.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 175-175
Author(s):  
Jennifer A. Ligibel ◽  
William Thomas Barry ◽  
Kathryn Jean Ruddy ◽  
Mary Greaney ◽  
Shoshana M. Rosenberg ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Physical Activity ◽  
Cancer Survivors ◽  
Young Women ◽  
Breast Cancer Survivors ◽  
Physical Activity Intervention ◽  
Healthy Lifestyle ◽  
Randomized Study ◽  
Significant Difference ◽  
Young Breast Cancer

175 Background: Inactivity is common in breast cancer survivors and has been linked to poor outcomes. Few trials have tested physical activity (PA) interventions in young women with breast cancer, who may face unique PA barriers due to demands of jobs and young families. Methods: Young and Strong was a cluster-randomized study evaluating the effect of education interventions for young breast cancer survivors.Sites were randomized 1:1 to a young women’s intervention (YWI), focused on fertility and other issues facing young women, or to a physical activity intervention (PAI). At PAI sites, providers were instructed to discuss PA with patients, and participants were given materials to encourage PA. PA was measured with the modified Godin Leisure Score Index at baseline, and 3, 6, and 12 months. Medical records were reviewed to assess provider attention to PA. Changes in weekly min of PA were compared between the PAI and YWI groups using general estimating equations to evaluate clustered binary and Gaussian data. Results: 467 patients enrolled between 7/12 -12/13 across 54 sites. Median age at dx was 40yrs (range 22-45). At baseline, participants were moderately active. PA increased in both groups over time (Table); there was no significant difference in PA between groups at any time (all p > 0.1). Provider attention to PA was documented in 74% of participants on PAI and 61% on YWI (p = 0.15), and correlated with PA at 12 months (median 100 min/wk of PA in participants with provider attention to PA vs. 60 min/wk in those without, p = 0.016). Participants who reported reading all or most the PAI materials reported higher levels of PA vs. those who read less (78% vs. 64%, p = 0.05) Conclusions: Young breast cancer survivors assigned to a PA intervention did not increase PA more than those assigned to an intervention focused on young women’s issues. However, the higher levels of PA among women who engaged with the PAI materials and those whose oncology providers addressed PA suggests the importance of enhancing patient and provider engagement with healthy lifestyle information and recommendations. Clinical trial information: NCT01647607. [Table: see text]

scholarly journals Unmet Supportive Care Needs among Breast Cancer Survivors of Community-Based Support Group in Kuching, Sarawak

2016 ◽  
Vol 2016 ◽  
pp. 1-9 ◽  
Author(s):  
Emmanuel Joseph Fong ◽  
Whye Lian Cheah
Keyword(s):  
Breast Cancer ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Support Groups ◽  
Support Group ◽  
Breast Cancer Survivors ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Community Based

Background.Recognizing the needs of cancer survivors is one of the important aspects in healthcare delivery. This study aimed to determine the prevalence of unmet supportive care needs and its associated factors among the breast cancer survivors of community-based support group in Kuching, Sarawak.Materials and Methods.This was a cross-sectional study using Supportive Care Needs Survey (SCNS-SF34). All the members of community-based breast cancer support groups in Kuching were invited. A total of 101 respondents were face-to-face interviewed after the consent was obtained. Data was entered and analyzed using SPSS version 20.Results.The respondents endorsedhealth system and informationdomain with the highest mean score (2.48; 95% CI: 2.32–2.64). Top 10 items with “moderate to high” level unmet needs had a prevalence of 14.9% to 34.7% of respondents indicating need. Significantly higher level of unmet needs was associated with survivors who were younger (less than 60 years old), had higher education attainment, were unemployed, had survival duration of up to 5 years, and were undergoing active treatment.Conclusion. Systematic delivery of health information which is targeted, culturally sensitive, and linguistically appropriate for addressing younger age, education level, employment status, length of survivorship, and treatment stage should be considered not only at hospital-based setting but also at the community-based support groups.

A Partnership in Health-Related Social Media for Young Breast Cancer Survivors

2018 ◽  
Vol 21 (2) ◽  
pp. 219-227
Author(s):  
Donna L. Williams ◽  
Timiya S. Nolan ◽  
Yu-wen Chiu ◽  
Laura Ricks ◽  
Silvia Gisiger Camata ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Social Media ◽  
Cancer Survivors ◽  
Young Women ◽  
Breast Cancer Survivors ◽  
The United States ◽  
Health Related ◽  
Gulf States ◽  
Young Breast Cancer

In the United States, about 11% (26,393) of those diagnosed with breast cancer in 2016 will be young or less than 45 years old. Young breast cancer survivors, compared to older cancer survivors, are a disparate group that experience higher incidence of advanced disease, greater mortality, and poorer quality of life, and are often faced with difficulty locating support that meet the unique needs of young women. The Gulf States Young Breast Cancer Survivor Network, composed of three sister networks, formed a partnership aimed at harnessing the power of social media to reach and impact the lives of young women with breast cancer. The collaborative partnership framework and the power of synergy are shown in merging two existing programs and incorporating a third new program.

The importance of fertility preservation in women with early breast cancer

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e20663-e20663
Author(s):  
A. Agbarya ◽  
S. Linn
Keyword(s):  
Breast Cancer ◽  
Fertility Preservation ◽  
Young Women ◽  
Large Scale ◽  
Breast Cancer Survivors ◽  
Early Stage ◽  
Young Patients ◽  
Future Research ◽  
Medical Procedure ◽  
Young Breast Cancer

e20663 Background: Young women with breast cancer often seek advice regarding treatment effects on their fertility. The purpose of this study was to gain a better understanding of women's attitudes to fertility and how these concerns affect decision-making. Methods: A survey on fertility issues was developed for young women with a history of early-stage breast cancer. The survey was completed by direct interviews with the patients. Results: Eighty-four eligible respondents completed the survey. Mean age at breast cancer diagnosis was 34.7 years. Fifty-seven percent of the women were Jewish and 43% were Arabic; 71% were married; 75% had more than 12 years of education. Stages at diagnosis were: I - 51%; II - 38%; III - 11%. Seventy-seven percent of the women were within six months of diagnosis and 49% reported substantial concern about becoming infertile with treatment. In multivariate logistic regression, a greater concern about infertility was associated with a wish for children (p=0.0008), number of children less than three (p=0.001), more than 12 years of education (p=0.004), and a moderate or high level of fear of treatment (p=0.004). Seventy-nine percent of patients reported discussing fertility concerns with their doctors, and 14% underwent a medical procedure for fertility preservation. Only five patients stated that infertility concerns influenced their treatment decisions. Conclusions: 1. Fertility after treatment is a major concern for young breast cancer patients undergoing chemotherapy. 2. This statement was not affected by ethnicity. 3. There is a need to communicate with and educate young patients regarding fertility issues and large scale future research directed at preserving fertility for young breast cancer survivors is warranted. No significant financial relationships to disclose.

Building the case for expanded support services to young breast cancer survivors: An evaluation of a cooperative agreement.

2014 ◽  
Vol 32 (26_suppl) ◽  
pp. 127-127
Author(s):  
Sarah O'Dell ◽  
Marnie House ◽  
Mary Ann Hall ◽  
Angela Moore ◽  
Temeika Fairley
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Program Implementation ◽  
Support Services ◽  
Breast Cancer Survivors ◽  
Program Effectiveness ◽  
The United States ◽  
Program Staff ◽  
Cooperative Agreement ◽  
Young Breast Cancer

127 Background: To determine effective and appropriate communication interventions to address the psychosocial needs of young breast cancer survivors (YBCS), the Centers for Disease Control and Prevention (CDC) established a cooperative agreement with seven organizations offering tailored support and education services to YBCS. The process evaluation of this cooperative agreement aims to document program implementation and the extent to which the cooperative agreement relationship (funding, subject matter expert support, technical assistance, and training) facilitates organizations’ delivery of programs. An additional five organizations were studied for comparison to gain a broader perspective on programmatic offerings for YBCS across the United States. Methods: The evaluation utilizes a multiple case study design, entailing document review, site visits, program observation, and in-depth interviews with program staff to describe program implementation and perceptions related to program effectiveness. Thematic analysis is being utilized to analyze all qualitative data collected. Results: Organizations offer a range of services, including psychosocial support and education to YBCS, YBCS caregivers and health care providers. Services offered cover the cancer care continuum, ranging from the provision of community outreach and education via multiple platforms (e.g., partnership development, online resource compilations, social media) to structured support services offered (e.g., patient navigation, structured support plans, tailored support groups for survivors and caregivers) to relevant YBCS audiences. Specifically, grantee program staff members report that cooperative agreement funding helped to expand and strengthen organizations' YBCS-focused efforts; all organizations offer lessons learned for communication with YBCS. Conclusions: Findings from this evaluation demonstrate the utility of federal funds to help organizations augment existing or create new resources and services for YBCS. Further, findings from this evaluation support the use of tailored interventions as a promising strategy to improve YBCS communication and education efforts.

Web-Based Survey of Fertility Issues in Young Women With Breast Cancer

2004 ◽  
Vol 22 (20) ◽  
pp. 4174-4183 ◽  
Author(s):  
Ann H. Partridge ◽  
Shari Gelber ◽  
Jeffrey Peppercorn ◽  
Ebonie Sampson ◽  
Katherine Knudsen ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Young Women ◽  
Breast Cancer Survivors ◽  
College Graduates ◽  
Early Stage ◽  
Young Patients ◽  
Breast Cancer Diagnosis ◽  
Future Research ◽  
History Of ◽  
Young Breast Cancer

Purpose Young women with breast cancer often seek advice about whether treatment will affect their fertility. We sought to gain a better understanding of women’s attitudes about fertility and how these concerns affect decision making. Patients and Methods We developed a survey about fertility issues for young women with a history of early-stage breast cancer. The survey was e-mailed to all registered Young Survival Coalition survivor members (N = 1,702). E-mail reminders were used. Results Six hundred fifty-seven eligible respondents completed the survey. Mean age at breast cancer diagnosis was 32.9 years; mean current age was 35.8 years. Ninety percent of women were white; 62% were married; 76% were college graduates. Stages at diagnosis were as follows: 0, 10%; I, 27%; II, 47%; III, 13%. Sixty-two percent of women were within 2 years of diagnosis. Fifty-seven percent recalled substantial concern at diagnosis about becoming infertile with treatment. In multivariate logistic regression, greater concern about infertility was associated with wish for children/more children (odds ratio [OR], 120; P < .0001), number of prior pregnancies (OR, 0.78; P = .01), and prior difficulty conceiving (OR, 1.86; P = .08). Twenty-nine percent of women reported that infertility concerns influenced treatment decisions. Seventy-two percent of women reported discussing fertility concerns with their doctors; 51% felt their concerns were addressed adequately. Women seemed to overestimate their risk of becoming postmenopausal with treatment. Conclusion Fertility after treatment is a major concern for young women with breast cancer. There is a need to communicate with and educate young patients regarding fertility issues at diagnosis and a need for future research directed at preserving fertility for young breast cancer survivors.

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