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Developing a post-treatment survivorship care plan to help breast cancer survivors understand their fertility.

ABSTRACT: PURPOSE:Reproductive-aged breast cancer survivors (BCS) who have completed initial cancer treatment frequently want to know about their future fertility potential. The purpose of this qualitative study was to assess if the fertility-related content presented in the survivorship care plan prototype met the informational needs of post-treatment BCS and to provide an opportunity for the target audience to review and react to the proposed content and design. METHODS:We conducted and analyzed transcripts from seven focus groups with BCS to evaluate their reactions to the survivorship care plan prototype. We independently coded transcripts for consistent themes and sub-themes and used a consensus-building approach to agree on interpretation of results. RESULTS:We identified five themes that describe the post-treatment BCS' responses to the prototype survivorship care plan in the context of their informational needs and experiences: (1) the prototype's fertility-related information is relevant; (2) desire for clinical parameters to help survivors understand their infertility risk; (3) fertility-related information is important throughout survivorship; (4) evidence-based content from a neutral source is trustworthy; and (5) the recommendation to see a fertility specialist is helpful, but cost is a barrier. CONCLUSIONS:BCS have concerns and needs related to their fertility potential after initial breast cancer treatment. The evidence-based information offered in our prototype survivorship care plan was acceptable to BCS and has significant potential to address these needs. Additional primary data that identify post-cancer treatment indicators of fertility would advance this effort.

SUBMITTER: Gorman JR

PROVIDER: S-EPMC7413066 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Developing a post-treatment survivorship care plan to help breast cancer survivors understand their fertility.

Gorman Jessica R JR Julian Anne K AK Roberts Samantha A SA Romero Sally A D SAD Ehren Jennifer L JL Krychman Michael L ML Boles Sarah G SG Mao Jun J Irene Su H H

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20170914 2

<h4>Purpose</h4>Reproductive-aged breast cancer survivors (BCS) who have completed initial cancer treatment frequently want to know about their future fertility potential. The purpose of this qualitative study was to assess if the fertility-related content presented in the survivorship care plan prototype met the informational needs of post-treatment BCS and to provide an opportunity for the target audience to review and react to the proposed content and design.<h4>Methods</h4>We conducted and a ...[more]

PMID: 28913697

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Project description:PURPOSE:Breast cancer survivorship care plans (SCP) have limited content addressing women's health issues. This trial tested if young breast cancer survivors who receive a web-based, women's health SCP were more likely to improve on at least one of the four targeted issues (hot flashes, fertility-related concerns, contraception, and vaginal symptoms) compared to attention controls. METHODS:A randomized controlled trial recruited female survivors ages 18-45 at diagnosis, 18-50 at enrollment, completed primary cancer treatment, and had a significant women's health issue: moderate or higher fertility-related concerns;???4 hot flashes/day with ??1 of moderate severity; ??1 moderate vaginal atrophy symptoms; or not contracepting/using less effective methods. Survivors underwent stratified, block randomization with equal allocation to intervention and control groups. The intervention group accessed the online SCP; controls accessed curated resource lists. In intention-to-treat analysis, the primary outcome of improvement in at least one issue by 24 weeks was compared by group. RESULTS:182 participants (86 intervention, 96 control), mean age 40.0?±?5.9 and 4.4?±?3.2 years since diagnosis, were randomized. 61 intervention group participants (70.9%) improved, compared to 55 controls (57.3%) (OR 1.82, 95% CI 0.99-3.4, p?=?0.057). The following issue-specific improvements were observed in the intervention versus control arms: fertility-related concerns (27.9% vs. 14.6%, OR 2.3, 95% CI 1.1-4.8); hot flashes (58.5% vs. 55.8%, OR 1.1, 95% CI 0.57-2.2); vaginal symptoms (42.5% vs. 40.7%, OR 1.1, 95% CI 0.6-2.0); contraception (50% vs. 42.6%, OR 1.4, 95% CI 0.74-2.5). CONCLUSIONS:In young breast cancer survivors, a novel, web-based SCP did not result in more change in the primary outcome of improvement in at least one of the four targeted women's health issues, than the attention control condition. The intervention was associated with improved infertility concerns, supporting efficacy of disseminating accessible, evidence-based women's health information to this population.

Project description:BackgroundAs of 2016, almost 16 million individuals were cancer survivors, including over 3.5 million survivors of breast cancer. Because cancer survivors are living longer and have unique health care needs, the Institute of Medicine proposed a survivor care plan as a way to alleviate the many medical, emotional, and care coordination problems of survivors.ObjectiveThis pilot study for breast cancer survivors was undertaken to: (1) examine self-reported changes in knowledge, confidence, and activation from before receipt to after receipt of a survivor care plan; and (2) describe survivor preferences for, and satisfaction with, a technology-based survivor care plan.MethodsA single group pretest-posttest design was used to study breast cancer survivors in an academic cancer center and a community cancer center during their medical visit after they completed chemotherapy. The intervention was a technology-based survivor care plan. Measures were taken before, immediately after, and 1 month after receipt of the survivor care plan.ResultsA total of 38 breast cancer survivors agreed to participate in the study. Compared to baseline levels before receipt of the survivor care plan, participants reported increased knowledge both immediately after its receipt at the academic center (P<.001) and the community center (P<.001) as well as one month later at the academic center (P=.002) and the community center (P<.001). Participants also reported increased confidence immediately following receipt of the survivor care plan at the academic center (P=.63) and the community center (P=.003) and one month later at both the academic center (P=.63) and the community center (P<.001). Activation was increased from baseline to post-survivor care plan at both the academic center (P=.05) and community center (P<.001) as well as from baseline to 1-month follow-up at the academic center (P=.56) and the community center (P<.001). Overall, community center participants had lower knowledge, confidence, and activation at baseline compared with academic center participants. Overall, 22/38 (58%) participants chose the fully functional electronic survivor care plan. However, 12/23 (52%) in the community center group chose the paper version compared to 4/15 (27%) in the academic center group. Satisfaction with the format (38/38 participants) and the content (37/38 participants) of the survivor care plan was high for both groups.ConclusionsThis study provides evidence that knowledge, confidence, and activation of survivors were associated with implementation of the survivor care plan. This research agrees with previous research showing that cancer survivors found the technology-based survivor care plan to be acceptable. More research is needed to determine the optimal approach to survivor care planning to ensure that all cancer survivors can benefit from it.

Project description:BackgroundAs a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors.ObjectiveThe purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors.MethodsTwenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor's Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method.ResultsCRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information.ConclusionsFor CRC, survivors may find the greater value in a PHR's medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients' needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management.

Project description:Purpose The purpose of this study was to examine the effects of a randomized controlled trial (RCT) of treatment summaries and survivorship care plans coupled with a nurse counseling session, primarily on physician implementation of and secondarily on patient adherence to recommended survivorship care, among a low-income population of breast cancer survivors (survivors). Methods We recruited 212 low-income, predominantly Latina (72.6%) survivors with stage 0 to III breast cancer, with an average age of 53 years, from two Los Angeles County public hospitals into an RCT of a survivorship care nurse counseling session coupled with the provision of individualized treatment summaries and survivorship care plans to patients and their health care providers from December 2012 to July 2014. One hundred seven survivors received the experimental intervention, and 105 survivors received usual care. Multiple linear regression analyses were performed to assess intervention effects on physician implementation of and patient adherence to recommended survivorship care. Scales that served as covariables were Knowledge of Survivorship Issues, Perceived Efficacy in Patient-Physician Interactions, and Satisfaction With Care and Information. Results Survivors in the intervention group reported greater physician implementation of recommended breast cancer survivorship care, for example, treatment of depression or hot flashes, than did those in the control group (adjusted difference, 16 ± 5.3; P = .003). Baseline Satisfaction With Care and Information was positively associated with physician implementation (coefficient, 5.2 ± 2.2; P = .02). Being married/partnered (-11.8 ± 4.0; P = .004) and age (-0.5 ± 0.2; P = .028) were negatively associated with patient adherence. Conclusion To our knowledge, this is the first RCT of survivorship care plans to show benefits in clinical outcomes, in this case, showing increased physician implementation of recommended breast cancer survivorship care in the intervention group, compared with the control group.

Project description:BackgroundBreast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits.ObjectiveThe overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes.MethodsWe will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors' online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties.ResultsWe have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years.ConclusionsThe results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management.International registered report identifier (irrid)PRR1-10.2196/23414.

Dataset Information

Developing a post-treatment survivorship care plan to help breast cancer survivors understand their fertility.

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Developing a post-treatment survivorship care plan to help breast cancer survivors understand their fertility.

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