Transition to Breast Cancer Survivorship: A Longitudinal Qualitative Follow-Up Study of Two-Year Survivors

This article reports on a qualitative, longitudinal follow-up of a cohort of breast cancer survivors through which their pretreatment psychological adjustment thought processes and behaviors were compared with those 2 years following diagnosis. Analysis revealed five interrelated themes reflecting changing thought processes and behaviors over time. Quantitative measures of psychological adjustment at 2 years were consistent with the qualitative findings in some respects; however, the concepts measured by these tools were inconsistent with themes identified through qualitative analysis. Findings support a need to study ways to assess women's psychosocial needs and intervene to support adjustment among 2-year breast cancer survivors.     

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

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.     

Evaluating Survivorship Experiences and Needs Among Rural African American Breast Cancer Survivors

Disparities in cancer survivorship exist among specific populations of breast cancer survivors, specifically rural African American breast cancer survivors (AA-BCS). While effective survivorship interventions are available to address and improve quality of life, interventions must be culturally tailored for relevance to survivors. Here, we report the results of our formative research using focus groups and in-depth interview to better understand unique rural AA-BCS survivorship experiences and needs in the Alabama Black Belt. Surveys were used to gather sociodemographic and cancer treatment data. Fifteen rural AA-BCS shared their experiences and concerns about keeping their cancer a secret, lack of knowledge about survivorship, lingering symptoms, religion and spirituality, cancer surveillance, and general lack of survivorship education and support. Rural AA-BCS were unwilling to share their cancer diagnosis, preferring to keep it a secret to protect family and friends. Quality-of-life issues like lymphedema body image and sexuality were not well understood. They viewed spirituality and religion as essential in coping and accepting cancer. Participants also discussed the importance of and barriers to maintaining health through regular check-ups. They needed social support from family and friends and health care providers. Overall, rural AA-BCS expressed their need for knowledge about survivorship self-management by providing a vivid picture of the realities of cancer survival based on shared concerns for survivorship support and education within the context of culture.     

Utilization of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

BackgroundPersons living after lung cancer remain an important subset of the cancer survivor population who may be at risk for serious health consequences of lung cancer and its treatments. The Institute of Medicine recommends survivorship care plans for all cancer survivors.Materials and MethodsA program for the creation of survivorship care plans, OncoLife, was made publicly accessible. Users responded to queries regarding demographics, diagnosis, and treatment and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence. Data were maintained anonymously with approval from the Institutional Review Board.ResultsFrom May 2007 to November 2008, 3343 individuals completed OncoLife surveys. Lung cancer survivors comprised 4% (n = 142), with a median age at diagnosis of 57 years and median current age of 59 years. Lung cancer survivors were 50% male and 83% Caucasian. Chemotherapy was used in the treatment of 78% of patients with lung cancer, radiation was used in 58%, and surgery was used in 38%. Most lung cancer survivors (62%) reported receiving follow-up care from only an oncologist, while 27% reported being monitored by a primary care provider (PCP) and an oncologist, and 6% saw only a PCP. Only 11% reported receiving survivorship information at the conclusion of therapy.ConclusionOncoLife represents the first Web-based program for the creation of survivorship care plans, and lung cancer survivors appear willing to use this type of tool. Most have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important.     

Development of Phase-Specific Breast Cancer Survivorship Care Plans

IntroductionPhase-specific survivorship care plans (SCPs) have the potential to be powerful tools in providing individualized, comprehensive survivorship care, particularly in terms of care coordination and transition, if used as dynamic documents.Materials and MethodsWe designed an initial follow-up care plan (FCP) to be used at the conclusion of curative therapy, as well as distinct, phase-specific FCPs for periodic use at 5-year and 10-year time points in the survivorship course. These FCPs incorporate the 4 essential components of survivorship care outlined by the Institute of Medicine: prevention, surveillance, intervention for consequences of cancer treatment, and coordination among health care providers.ResultsPhase-specific SCPs were designed by a multidisciplinary team with expertise in breast health, survivorship, and cancer care delivery across diverse practice settings. The FCPs were formulated to align with national guidelines and emergent, peer-reviewed literature, and reflect evolving recommendations regarding the duration of adjuvant hormone therapy. The SCPs were pilot-tested and successfully integrated into the existing work flow of the electronic medical records at each practice site.ConclusionPhase-specific SCPs were developed to incorporate new knowledge about evolving treatment recommendations, screening guidelines, and updated genetic information to encourage timely discussions relevant to the specific stage of survivorship.     

A Qualitative Investigation of Cancer Survivorship Experiences Among Rural Hispanics

Cancer survivorship experiences were explored among Hispanic men and women with cancer and family members of cancer survivors, recruited from two rural Washington communities in the Lower Yakima Valley. Five focus groups were conducted from February 2006 to October 2007 with 31 women and 10 men. Disbelief, fear, sadness, strength, courage, faith, and hope were common reactions to diagnosis. Concerns about family/children, losing medical coupons, and feelings of depression/isolation were identified as challenges faced after diagnosis. Participants identified smoking and environmental exposures as causes of cancer, but many believed operating on tumors caused cancer to spread. Participants used conventional treatments but identified herbal/natural remedies as cures. Most participants reported negative experiences with physicians and believed their community would benefit from language-appropriate information regarding prevention and treatment. The importance of linking survivors through support groups was emphasized and information elicited from sessions has been used to organize survivor support groups in these two communities.     

Survivorship Care Planning in Colorectal Cancer: Feedback from Survivors & Providers

The Institute of Medicine recommended that all patients receive survivorship care plans (SCPs) post-treatment to improve quality of follow-up care. However, little is known regarding how survivors utilize SCPs and the congruency between providers’ and survivors’ perspectives. Feedback from colorectal cancer survivors (in receipt of a personalized/individualized SCP) and oncology providers was obtained via interviews. Survivors noted SCPs benefits of reduced duplicative procedures and cancer worry with the synthesized treatment information. Providers noted billing/reimbursement and time investiture (for form completion) as potential barriers. Further investigation of SCPs is warranted regarding utility prior to widespread adoption in follow-up care.     

Breast Cancer Survivorship

Abstract

Studies have reported that race/ethnicity, socioeconomic status, access to care, early diagnosis, quality of care, and spirituality are important prognostic factors for a breast cancer diagnosis. This exploratory study seeks to identify the perceived needs of Black middle-income breast cancer survivors. The Delphi Technique, a qualitative research approach (for deriving cultural consensus), was used to assess needs of 62 Black middle-income socioeconomic position survivors. Survivors' expressed needs were to have (1) affordable, accessible, acceptable, and appropriate medical and support services; (2) a caring and loving family; (3) contacts for information regarding breast cancer symptoms or related health problems; (4) an intimate relationship with God; and (5) adequate resources for self and family care.This pilot study suggests Black breast cancer survivors, regardless of a middle-income socioeconomic position (SEP), experience similar socioecological stressors as low-income SEP survivors.     

Breast Cancer Survivorship Care Variations Between Adjuvant Chemotherapy Regimens

Background

Treatment-related toxicity can vary substantially between chemotherapy regimens. In this study we evaluated the frequency of outpatient office visits among a cohort of early stage breast cancer survivors after completion of 4 different adjuvant chemotherapy regimens to better understand how differences in toxicities between regimens might affect health care use.

Breast Cancer Disparities Among Women in Underserved Communities in the USA

Purpose of Review

Breast cancer disparities that exist between high-income countries (HIC) and low- and middle-income countries (LMICs) are also reflected within population subgroups throughout the United States (US). Here we examine three case studies of US populations “left behind” in breast cancer outcomes/equity.

Recent Findings

African Americans in Chicago, non-Latina White women in Appalachia, and Latinas in the Yakima Valley of Washington State all experience a myriad of factors that contribute to lower rates of breast cancer detection and appropriate treatment as well as poorer survival. These factors, related to the social determinants of health, including geographic isolation, lack of availability of care, and personal constraints, can be addressed with interventions at multiple levels.

Summary

Although HICs have reduced mortality of breast cancer compared to LMICs, there remain inequities in the US healthcare system. Concerted efforts are needed to ensure that all women have access to equitable screening, detection, treatment, and survivorship resources.

     

A Qualitative Description of a Family Intervention for Breast Cancer Survivors Experiencing Fatigue

Breast cancer survivors commonly experience fatigue, but family-focused interventions as a means to reduce fatigue are understudied. This qualitative study explored the experience of adding a family component to a multimodal group intervention for fatigue. Data were collected from group observations, in-depth interviews, and debriefing sessions with the program social worker. Fourteen survivors completed the family intervention (mean age 57 years) with a family member or close friend. Four themes associated with the family intervention were identified: (a) importance of family inclusion, (b) education of family members about fatigue, (c) enhanced family communication, and (d) family partnership to combat fatigue.     

Understanding and Improving Knowledge of Cancer Survivorship Care Among College Providers

This study aimed to assess college providers’ basic knowledge of the health risks of young adult cancer survivors (YAS) and related care guidelines and to determine whether an educational in-service is an effective platform for increasing college health providers’ knowledge about survivorship care at a large university health center. During phase 1, staff from college health centers and office of disabilities in the Philadelphia area (n = 40 staff members from 24 colleges/universities) completed a needs assessment on their experiences with YAS and preferences for education and care coordination. During phase 2, a 1-h educational in-service, informed by results of the survey, was provided to 18 health center medical providers. While most providers indicated that YAS are at risk for chronic health conditions because of cancer treatment, nearly all were unfamiliar with the content of published long-term follow-up guidelines for cancer survivorship. Over half did not have knowledge of cancer survivorship services in their area. All respondents were interested in more education on cancer survivorship care. Attendees of the in-service increased their knowledge of survivorship follow-up guidelines, awareness of local survivorship resources, and comfort with caring for YAS at posttest relative to baseline. The in-service was highly acceptable to providers and feasible to implement. College providers had little baseline knowledge of cancer survivorship guidelines, but were motivated to obtain more information. Through an educational in-service, college health providers may be better equipped to provide acute and longitudinal survivorship care to a vulnerable population who are at risk for inadequate engagement in risk-based follow-up care.     

First Report of Worldwide Use of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

BackgroundIn the past 3 decades, the number of cancer survivors has more than tripled (MMWR, 2004). Although long-term success in the treatment of lung cancer remains limited, lung cancer survivors remain an important subset of the survivor population and might be at risk for late effects resulting from treatment and disease processes. Multiple groups have shown survivor care to be inadequate, and the Institute of Medicine has identified a need for survivorship care plans (SCPs) for all cancer survivors. Here, we describe for the first time use patterns of the first personalized Web-based SCP by lung cancer survivors.Patients and MethodsA program for creation of SCP, OncoLife, was made publicly accessible through OncoLink (available at: http://www.oncolink.org), a Web site serving over 3.9 million pages per month to 385,000 unique IP addresses (August 2007) and based at the University of Pennsylvania. Data was maintained anonymously and securely, and collection and analysis processes were reviewed by the institutional review board. Users responded to queries regarding demographics, diagnosis, and treatment and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence.ResultsFrom May 2007 to May 2008, 2573 individuals completed OncoLife surveys. Users described themselves as cancer survivors (66%), family members/friends of survivors (12%), and healthcare providers (23%), and identified themselves as residents of 46 states and 15 countries. Median age at cancer diagnosis was 48 years (range, 18–100 years), and median current age was 51 years (19 to > 100 years). Users were 86% white and 71% female. Lung cancer survivors comprised 5% (n = 113) of the population of OncoLife users. Lung cancer survivors were 51% female and 93% white. Chemotherapy was delivered to 75% of patients with lung cancer, with platinum- and paclitaxel-based agents being the most common drugs used (93% and 57%, respectively). Radiation was used in the treatment of 57% of lung cancer survivors and surgery in treatment of 38%. Most lung cancer survivors (84%) reported receiving follow-up care from a dedicated oncologist, although only 36% reported being followed by a primary care provider (PCP). Only 10% reported receiving survivorship information at the conclusion of therapy.ConclusionsOncoLife represents the first Web-based program for creation of SCP, and patients, family members, and healthcare providers appear willing to use this type of tool. Most lung cancer survivors have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important. Future versions of OncoLife will strive for increased accessibility and use in this underrepresented population.     

Knowledge About Genomic Recurrence Risk Testing Among Breast Cancer Survivors

Genomic expression profiling of tumors is used to individualize early-stage breast cancer treatment. However, very little is known about patients’ understanding of and desired information about these tests, such as Oncotype DX. We addressed these issues via a survey mailed to 130 early-stage breast cancer patients who received an Oncotype DX test result. The survey assessed understanding (14 items), information desired about genomic expression profiling tests, and if and where they sought information about Oncotype DX. Sixty-four surveys were returned. Overall, 54% of the knowledge items were answered correctly. Patients wanted education about genomic tests in many areas. Overall, 62% sought information about the test, primarily from the Internet (48%) and doctor or health care provider (31%). In sum, patients’ misunderstanding of genomic tests abound, necessitating better educational efforts on behalf of health care systems to meet their needs for varied information through different communication channels.     

Sexual Health as a Survivorship Issue for Female Cancer Survivors

As more and more people are successfully treated for and live longer with cancer, greater attention is being directed toward the survivorship needs of this population. Women treated for cancer often experience issues related to sexual health and intimacy, which are frequently cited as areas of concern, even among long‐term survivors. Unfortunately, data suggest that providers infrequently discuss these issues. We reviewed a contemporary understanding of sexual health of women and the impact of treatment on both sexual function and intimacy. We also provide a review of the diagnosis using the newest classification put forth by the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, and potential treatments, including both endocrine and nonendocrine treatments that the general oncologist may be asked about when discussing sexual health with his or her patients.     

Biopsychosocial Predictors of Psychological Functioning Among African American Breast Cancer Survivors

This study examined the relationships of biological and psychosocial predictors as contributing factors to the psychological functioning among breast cancer survivors. A sample of (N = 155) African American breast cancer survivors were recruited from California. A general linear model was utilized to examine the relationships. Biological and psychosocial risk factors were significant predictors for anxiety and depression. These predictors can be viewed as contributing factors to the psychological well-being of this cohort. Anxiety and depression are often under-recognized and subsequently undertreated in survivors. Understanding the predictors of depression and anxiety is necessary for incorporating a multidisciplinary approach to address this problem.