scholarly journals Survivorship Care Focus Group Discussions for Breast Cancer Survivors and Primary Care Clinicians

2021 ◽  
pp. 1-4
Author(s):  
Hillary Klonoff-Cohen ◽  
Hillary Klonoff-Cohen ◽  
Mounika Polavarapu

Purpose: This is the first pilot study to examine survivors’ experiences and primary care physicians and nurse practitioners’ knowledge and behaviour practices with respect to late effects (e.g., fatigue, chemobrain, lymphodema, cardiac problems, reproductive, infertility and sexual health issues, bone problems, and pain). Methods: Two separate focus groups consisting of 5 breast cancer survivors and 5 primary care physicians and nurse practitioners recruited from a local hospital in Central Illinois answered predetermined questions about cancer survivorship care. We intentionally limited the sample in order to conduct a detailed discussion (90 minutes) to gain every participant’s perspective. Results: Breast cancer survivors expressed a void in discussion and lack of knowledge among their primary care physicians regarding late effects as well as psychological consequences, referrals to support groups, and availability of resources (e.g., finances), thereby negatively affecting survivors’ quality of life. A primary care clinician (PCC) focus group revealed a service gap for mental health services for all patients, knowledge deficit about late effects, and lack of awareness of patient resources. Both cancer survivors and PCCs were extremely supportive about a shared care survivorship model between oncology and primary care. All focus group participants were unequivocally receptive about enhancing survivorship care throughout a cancer survivor’s lifetime. Conclusion: Complementing cancer survivorship care with primary care clinicians in the areas of late effects, in addition to psychological consequences, screening, and lifestyle habits will enhance a cancer survivor’s health-related quality of life.

2019 ◽  
Vol 28 (2) ◽  
pp. 645-652 ◽  
Author(s):  
Jessica L. Krok-Schoen ◽  
Jennifer DeSalvo ◽  
Dori Klemanski ◽  
Christian Stephens ◽  
Anne M. Noonan ◽  
...  

2012 ◽  
Vol 30 (2) ◽  
pp. 158-163 ◽  
Author(s):  
Erica L. Mayer ◽  
Adrienne B. Gropper ◽  
Bridget A. Neville ◽  
Ann H. Partridge ◽  
Danielle B. Cameron ◽  
...  

Purpose As the number of breast cancer survivors increases, a durable model of comprehensive survivor care is needed, incorporating providers and/or visit types both within and outside of oncology. The objective of this study was to explore survivors' comfort with different clinician types or with a telephone/Internet-based virtual visit as components of survivorship care. Methods Breast cancer survivors participating in a general survivorship survey completed an additional breast cancer–specific questionnaire evaluating the self-perceived impact of follow-up visits to various clinician types, or follow-up by a virtual visit, on survival, worrying, and stress related to cancer. Results A total of 218 breast cancer survivors completed the questionnaire. Most favored medical oncologist follow-up visits over those with primary care physicians (PCPs) or nurse practitioners (NPs) in terms of reduced worrying about cancer (odds ratio [OR], 2.21; P < .001), reduced stress around the visit (OR, 1.40; P = .002), and improved effect on cancer survival (OR, 2.38; P < .001). However, the majority also displayed substantial comfort with both PCPs and NPs in the same domains. Patients rated a virtual visit as having a less favorable impact on cancer survival and cancer-related worrying compared with in-person visits with clinicians. Conclusion Breast cancer survivors are comfortable with both PCPs and NPs providing follow-up care, although they indicate a preference for medical oncologists. Given patients' negative impressions of a virtual visit, increased familiarity with and research investigating this emerging concept are needed. The NP-led survivorship clinic model, with increased guidance for PCPs, offers a promising route for improving quality of and satisfaction with survivor care.


Author(s):  
Eden R. Brauer ◽  
Elisa F. Long ◽  
Laura Petersen ◽  
Patricia A. Ganz

Abstract Purpose Breast cancer-specific survivorship care guidelines for the more than 3.8 million survivors in the U.S. are available, but implementation in clinical practice remains challenging. We examined current practice patterns and factors associated with guideline-concordant survivorship care among oncologists. Methods A national sample of medical oncologists, recruited using two databases, participated in a survey focused on practice patterns for breast cancer survivorship care. A “survivorship care composite score” was calculated for each respondent based on provision of services recommended in the survivorship guidelines. Descriptive statistics and multivariable linear regression analyses examined associations between physician and practice characteristics and composite scores. Results The survey was completed by 217 medical oncologists, with an overall response rate of 17.9% and eligibility rate of 56.9% for those who responded. Oncologists reported high engagement in evaluation of disease recurrence (78%). Performed less frequently were the provision of survivorship care plans (46%), assessment of psychosocial long-term and late effects (34%), and screening for subsequent cancers (34%). Lack of survivorship care training (p = 0.038) and not routinely informing patients about potential late effects (p = 0.003) were significantly associated with poorer survivorship care composite scores. Conclusions Despite the availability of disease-specific survivorship care guidelines, adherence to their recommendations in clinical practice is suboptimal. Survey results identified key gaps in survivorship care for breast cancer survivors, particularly related to subsequent primary cancers and psychosocial long-term and late effects. Implications for Cancer Survivors Improving the delivery of comprehensive survivorship care for the growing population of breast cancer survivors is a high priority. Disease-specific clinical guidelines for cancer survivorship provide valuable recommendations, but innovative strategies are needed to integrate them into the care of long-term breast cancer survivors.


2008 ◽  
Vol 26 (5) ◽  
pp. 759-767 ◽  
Author(s):  
Patricia A. Ganz ◽  
Erin E. Hahn

Breast cancer survivors account for 23% of the more than 10 million cancer survivors in the United States today. The treatments for breast cancer are complex and extend over a long period of time. The post-treatment period is characterized by gradual recovery from many adverse effects from treatment; however, many symptoms and problems persist as late effects (eg, infertility, menopausal symptoms, fatigue), and there may be less frequent long-term effects (eg, second cancers, lymphedema, osteoporosis). There is increasing recognition of the need to summarize the patient's course of treatment into a formal document, called the cancer treatment summary, that also includes recommendations for subsequent cancer surveillance, management of late effects, and strategies for health promotion. This article provides guidance on how oncologists can implement a cancer treatment summary and survivorship care plan for breast cancer survivors, with examples and linkage to useful resources. Providing the breast cancer treatment summary and survivorship care plan is being recognized as a key component of coordination of care that will foster the delivery of high-quality cancer care.


2011 ◽  
Vol 29 (27_suppl) ◽  
pp. 210-210
Author(s):  
C. E. Hill-Kayser ◽  
C. Vachani ◽  
M. K. Hampshire ◽  
G. A. Di Lullo ◽  
J. M. Metz

210 Background: Breast cancer survivors may be at risk for significant late effects after treatment. Understanding the patterns of change over time of patient reported outcomes (PRO) is often very challenging. Methods: Patient-reported data was gathered via a convenience sample frame from breast cancer survivors utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and through the OncoLink website, the tool allows survivors to enter data regarding diagnosis, demographics, treatments received, and late effects experienced, and provides them with customized guidelines for future care. All data has been maintained anonymously with IRB approval. Results: 1,145 breast cancer survivors were queried with regard to PRO. Median age at diagnosis (dx) was 49 yrs, and median current age 52 yrs. Of users, 98% reported having had surgery; of these 56% underwent mastectomy and 49% lumpectomy (5% both). Similarly, 59% underwent sentinel LN biopsy, and 47% axilary dissection. Of the same cohort, 88% received chemotherapy and/or hormonal treatment, and 70% radiation therapy. The median time from dx until use of the care plan tool was 2 years (range 0-33 years). Late effects reported by survivors ≤ 2 and > 2 years from diagnosis are shown (see table). Overall, survivors ≤ 2 years from dx were more likely to note changes in skin color or texture; those > 2 years from diagnosis were more likely to note osteopenia, lymphedema, and sexual changes. Patient reported cognitive changes, arm pain/numbness/tingling, and loss of shoulder flexibility did not differ between the two groups. Conclusions: This anonymous tool uses a convenience sample frame to gather PRO after breast cancer diagnosis/ treatment. PRO varied significantly with time since dx, with more late effects reported > 2 years from dx. This information may be of use during patient counseling and survivorship care delivery. [Table: see text]


Author(s):  
Mary McBride ◽  
Patti Groome ◽  
Li Jiang ◽  
Marlo Whitehead ◽  
Dongdong Li ◽  
...  

IntroductionBreast cancer survivors are at risk for late and ongoing problems including cancer recurrence and late effects of treatment. Lack of access to quality follow-up care may affect later mortality, morbidity, and quality of life. This study examines variation in utilization of guideline-based follow-up care separately for four Canadian provinces. Objectives and ApproachFor our retrospective population-based cohort study of breast cancer survivors diagnosed from 2007 to 2010 in British Columbia (BC), 2007-2011 in Manitoba (MB), 2007-2010 in Ontario (ON), and 2007-2012 in Nova Scotia (NS), we linked provincial cancer registries, clinical and health administrative databases, and followed cases alive at 30 months post-diagnosis to five years from diagnosis. For each province, we calculated percent adherence, overuse, and underuse of recommended follow-up care, including surveillance for recurrent and new cancer, surveillance for late effects, and general preventive care. We also examined variation among provinces and over time. ResultsSurvivor numbers were 23,700 (ON), 9493 (BC), 2688 (MB), and 2735 (NS). Annual oncologist visit guideline compliance varied provincially (e.g. Year 2 ON=32.7%, BC=15.0%). For most provinces and follow-up years, the majority of survivors had fewer oncologist visits than recommended.  However, survivors had additional annual breast cancer-related visits to a primary care provider.  Surveillance breast imaging guideline compliance was high (e.g. Year 2, ON=81.1%, MB=72.0%, NS=52.8%, BC =49.7%), with rates declining in ON and MB (to approximately 64%), but increasing in NS and BC (to approximately 58%) by Year 5. Overuse of breast imaging was identified in NS (9.1%-20.7% overuse in follow-up years 2-5).  As per the guideline, 72.9%-79.7% (Years 2-5) of BC survivors had no imaging for metastastic disease, highest among all provinces. Conclusion/ImplicationsProvincial and temporal variations in guideline adherence were identified. Patterns differed by guideline, and both overuse and underuse were observed. These results point to opportunities to improve survivor care and efficiencies in care delivery. In particular, regular care with a primary care physician has been shown to improve follow-up care.


2020 ◽  
Vol 29 (1) ◽  
pp. 223-230
Author(s):  
Christian Stephens ◽  
Dori Klemanski ◽  
Maryam B. Lustberg ◽  
Anne M. Noonan ◽  
Seuli Brill ◽  
...  

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 204-204
Author(s):  
Stephanie B. Wheeler ◽  
Lisa Spees ◽  
Caitlin B. Biddell ◽  
Jason Rotter ◽  
Justin G. Trogdon ◽  
...  

204 Background: The rapidly growing number of cancer survivors in the US have substantial healthcare needs requiring surveillance and care for the late and long-term effects of cancer treatment and comorbidities. Lacking a clear system of care, experts recommend a personalized approach to survivorship care. The objective of this study was to test a clinical prediction algorithm to distinguish low-complexity breast cancer survivors who may be suited to self-manage their survivorship care and be followed by their primary care provider (PCP) from survivors who require specialty care. Methods: We used the Surveillance and Epidemiology End Results (SEER) registry – Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey data to identify women diagnosed with stage 0-3 breast cancer between 2003 and 2011. Cross-validated random forest machine learning models separately estimated survivors’ independent risk of all-cause death, cancer-specific death, recurrence, or severe late effects within 3 years following treatment completion. The absence of these outcomes identified survivors as potentially eligible for self-management and PCP care. Predictors included measures of baseline health status and health care utilization, patient socio-demographic characteristics, cancer characteristics, and financial burden. Results: Among the 4,516 survivors in the primary cohort, 82% were white, and the mean (SD) age was 75.1 (7.8) years. Almost 50% were diagnosed with Stage I breast cancer, followed by 25.2% with Stage 2, 19.3% with Stage 0, and 5.6% with Stage III. Within the 3-year follow-up period, 372 (8.2%) survivors died (111 or 2.5% from cancer), 665 (14.7%) experienced recurrence, and 488 (10.8%) were hospitalized due to severe late effects. Predicting all-cause death resulted in 91.9% out-of-sample accuracy, a 37.6% improvement over an uninformed model. Important predictors across outcomes included age, geographic region, diagnosis year, financial burden, comorbidities, and cancer stage. Conclusions: Survivors requiring specialty care are characterized by higher comorbidity, lower educational attainment, and advanced age, suggesting that, in addition to cancer characteristics, personalized care pathways developed in response to our findings must account for social and contextual factors as well.


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