A telephone-based education and support intervention for Rural Breast Cancer Survivors: a randomized controlled trial comparing two implementation strategies in rural Florida.

PURPOSE: To compare two implementation telephone-based strategies of an evidence-based educational and support intervention to Rural Breast Cancer Survivors (RBCS) in which education was delivered early or after the support component. METHODS: Florida RBCS participated in a 12-month randomized clinical trial (RCT) with two arms: Early Education and Support (EE-S) and Support and Delayed Education (S-DE). Arms differed in the timing of 6 support and 3 education sessions. Main outcome was quality of life (QOL, SF-36 physical and mental composite scores [PCS, MCS]). Secondary outcomes were depressive symptoms (Centers for Epidemiologic Studies Depression Scale, CES-D), mood (Profile of Mood States, POMS), and social support (Medical Outcomes Study Social Support Survey, MOS-SSS). Outcomes were analyzed longitudinally using repeated measures models fitted with linear mixed methods. RESULTS: Of 432 RBCS (mean 25.6 months from diagnosis), about 48% were 65+, 73% married/partnered, and 28% with ≤high school education. There were no differences between EE-S and S-DE in demographics or outcomes at baseline (mean (standard deviation): SF-36 PCS, 44.88 (10.6) vs. 45.08 (10.6); MCS, 49.45 (11.1) vs. 48.1 (11.9); CES-D, 10.11 (9.8) vs. 10.86 (10.5); POMS-SF, 23.95 (38.6) vs. 26.35 (38.8); MOS-SSS, 79.2 (21.2) vs. 78.66 (21.2)) or over time. One exception was slightly worse mean scores at month 9 in MCS (Cohen's d, - 0.22; 95% CI, - 0.38, - 0.06) and POMS (Cohen's d, 0.23; 95% CI, 0.07, 0.39) for EE-S vs. S-DE. CONCLUSIONS: The implementation strategies were equivalent. IMPLICATIONS FOR CANCER SURVIVORS: Enhancing support may be considered before delivering not-in-person interventions to RBCS.

Telehealth intervention for Latina breast cancer survivors: A pilot.

AIM: This study was a pilot test of the Latina Breast Cancer Survivorship Intervention, a survivorship self-management intervention delivered via telephone. MATERIALS AND METHODS: This study used a wait-list control design with random assignment to either (1) support and early education or (2) support and delayed education. Latina breast cancer survivors were recruited through the Florida Cancer Data System Registry. Latinas with stage I-III breast cancer who completed primary cancer treatment 3 years prior to study enrollment were eligible. The Latina Breast Cancer Survivorship Intervention consisted of three education sessions delivered weekly via telephone and six telephone support calls, both delivered by a native Spanish speaker. Primary outcome variables included physical well-being, emotional well-being, fatigue, pain, and depressive symptoms. Data collection occurred at baseline, 3 months, and 6 months. RESULTS: In total, 40 Latina breast cancer survivors who were middle-aged to older, married, with health insurance, and Spanish as preferred language enrolled in the Latina Breast Cancer Survivorship Intervention. Data were analyzed using mean change scores. Overall, physical and emotional well-being remained similar over time with well-being scores poorer compared with the general population. Pain levels improved over 6 months and showed a high effect size. Fatigue scores improved at 3 months and showed a moderate effect size. Depressive symptoms remained elevated but were not clinically significant. CONCLUSION: Telephone-based Latina Breast Cancer Survivorship Intervention reached Latina breast cancer survivors for survivorship education and support. Self-management of pain and fatigue showed improvement over time.

Out-of-pocket costs and burden among rural breast cancer survivors.

Little is known about out-of-pocket (OOP) costs incurred for medical and health needs by rural breast cancer survivors and what factors may be associated with higher OOP costs and the associated economic burden. Data were examined for 432 survivors participating in the Rural Breast Cancer Survivor Intervention trial. OOP costs were collected using the Work and Finances Inventory survey at baseline and four assessments every 3 months. Mean and median OOP costs and burden (percent of monthly income spent on OOP costs) were reported and factors associated with OOP costs and burden identified with generalized linear models fitted with over-dispersed gamma distributions and logarithmic links (OOP costs) and with beta distributions with logit link (OOP burden). OOP costs per month since the end of treatment were on average $232.7 (median $95.6), declined at the next assessment point to $186.5 (median $89.1), and thereafter remained at that level. Mean OOP burden was 9% at baseline and between 7% and 8% at the next assessments. Factors suggestive of contributing to higher OOP costs and OOP burden were the following: younger age, lower income, time in survivorship from diagnosis, and use of supportive services. OOP costs burden rural breast cancer survivors, particularly those who are younger and low income. Research should investigate the impact of OOP costs and interventions to reduce economic burden.

Patient-centered outcome evaluation of the Rural Breast Cancer Survivors Intervention.

PURPOSE: Patient-centered evaluation is a critical but often overlooked component of intervention research. The Rural Breast Cancer Survivors (RBCS) Intervention is a survivorship education and support intervention designed for rural breast cancer survivors. Here, we describe evaluation of the RBCS Intervention from the participants' experience. METHODS: Three hundred sixty-four breast cancer survivors participating in the RBCS Intervention were asked to complete the RBCS Evaluation Survey that consisted of 6 quantitative statements and 12 qualitative questions via mail. RESULTS: Two hundred twenty-one participants (61 %) returned the RBCS Evaluation Survey. All 221 completed the qualitative component, and 91 (25 %) completed the quantitative. Overall, participants indicated that the education materials were easy to understand and addressed their quality of life concerns. Majority (94 %) indicated that the survivorship information was helpful in making health decisions and communicating concerns to family (87 % strongly agree/agree) and oncology team (88 % strongly agree/agree). Only 66 % indicated that the survivorship educational materials were provided at an appropriate time after completion of primary breast cancer treatment. Qualitative data suggested that participants had positive perceptions and experiences and found the RBCS Intervention helpful. One-on-one interaction with the intervention nurses was the single most highly valued aspect. CONCLUSION: Overall, the RBCS Intervention was helpful. Education materials addressed quality of life concerns. Breast cancer survivors developed skills in communicating with their family and oncology team. Intervention nurses were identified as the most valuable aspect of the program. Suggestions include earlier timing of survivorship education and support, and adaptation using social media access to serve other rural survivors. RELEVANCE: Patient-centered evaluations, using both quantitative and qualitative data, provide enriched understanding of evidence-based survivorship interventions and should be considered a standard for future work.

Variation in resources needed to implement psychosocial support interventions for rural breast cancer survivors.

PURPOSE: Understanding how resources are used provides guidance to disseminating effective interventions. Here, we report data on implementation resources needed for the Rural Breast Cancer Survivors (RBCS) study that tested a telephone-delivered psychoeducational education and support intervention to survivors in rural Florida. Intervention resources included interventionists' time on one intake assessment (IA) call, three education calls (ED), one follow-up education call (FUE), six support (SUP) calls, and documentation time per survivor. METHODS: Interventionists logged start and end times of each type of call. Average interventionist time in minutes was calculated by call type. Associations between interventionists' time and participants' characteristics including age, race/ethnicity, time since treatment, cancer treatment, depressive symptoms, education, income, employment, and support, was assessed using linear mixed models with repeated measures. RESULTS: Among 328 survivors, IA calls lasted 66.9 min (SD 21.7); ED lasted 50.6 (SD 16.7), 48.1 (SD 15.9), and 39.6 (SD 14.8); FUE lasted 24.7 (SD 14.8); and SUP 42.8 (SD 29.6) min. Documentation time was 18.4 min for IA, 23-27 for ED, 12.3 for FUE, and 23.0 for SUP. CONCLUSION: Interventionists spent significantly more time with participants with depressive symptoms, who already used other support, and who received SUP calls before the ED vs. after. There were no significant differences by time since or type of cancer treatment, or other personal characteristics. IMPLICATIONS FOR CANCER SURVIVORS: Resources vary by survivor characteristics. Careful consideration of mental health status or support available is warranted for planning implementation and dissemination of effective survivorship interventions on a broad scale.

Multimorbidity and breast cancer.

OBJECTIVES: To examine the significance of multimorbidity in breast cancer survivors, to explore multimorbidity in treatment decisions, and survivorship, and to consider multimorbidity assessment in clinical practice. DATA SOURCES: Literature review; clinical practice guidelines. CONCLUSION: Multimorbidity influences treatment decisions. Breast cancer survivors report greater multimorbidity compared with other cancer survivors. Multimorbidity increases with age; there may be racial and ethnic differences. Multimorbidity is associated with symptom burden, functional decline, low adherence to surveillance, and early retirement. IMPLICATIONS FOR NURSING PRACTICE: Clinical practice guidelines do not refer to multimorbidity and patient outcomes. Comprehensive geriatric assessment combined with survivorship care plan may be considered.

Adapting an evidence-based survivorship intervention for Latina breast cancer survivors.

AIM: About 120,000 Latina breast cancer survivors (LBCS) live in the USA with the numbers expected to increase. LBCS experience survivorship disparities and report poor quality of life outcomes. Despite poor outcomes, few survivorship interventions for LBCS are available. Adapting evidence-based interventions for Latinas may be one strategy to reduce disparities. MATERIALS & METHODS: An evidence-based intervention called the Breast Cancer Education Intervention was adapted for Latinas. First, certified translation and cognitive interview to assess cultural relevance were conducted. Next, a pilot sample of 40 Latinas who participated in the intervention were asked to provide follow-up evaluation of their satisfaction with and usefulness of the translated education manual and intervention. RESULTS: Thirty LBCS completed the intervention, and 14 LBCS submitted an evaluation summary expressing satisfaction with usefulness, readability and relevance. CONCLUSION: The process by which translation and cultural adaptation of an evidence-based intervention provides beginning foundation to support and reduce disparities among LBCS.

Application of a novel transdisciplinary communication technique to develop an Internet-based psychoeducational program: CaringGuidance™ After Breast Cancer Diagnosis.

AIM: The aim of this work was is to create CaringGuidance™ After Breast Cancer Diagnosis, an Internet-based, self-guided psychoeducational program to facilitate adjustment among women in the first months after breast cancer diagnosis. BACKGROUND: Use of Internet technology addresses a gap in the delivery of psychoeducational clinical interventions immediately after breast cancer diagnosis; providing rapid access to information and guidance during a highly distressing and vital period of adjustment. METHODS: A multi-step transdisciplinary communication process of Personae Creation, Layered Project Mapping©, and Rapid Iterative Prototyping (RIP) was applied to facilitate communication between researcher, technology team and content reviewers during clinical program development. RESULTS: Through three rounds of content review and two focus groups guided by this process, the reviewers, researcher and technology team communicated effectively; completing the project on-time and within budget. CONCLUSIONS: Application of a multi-step transdisciplinary communication process is feasible and essential to development of an Internet-based psychoeducational program.

Co-morbidity and predictors of health status in older rural breast cancer survivors.

PURPOSE: More than 66% of the 200,000 newly diagnosed annual breast cancers in the US occurs in women over 55 years. Treatment advances result in excellent survival, yet older breast cancer survivors with co-morbidity may live longer, but not better after cancer. Decline in physical function, increased social isolation, and diminished economic resources increase vulnerability among older women. Rural women represent an underserved population. The purpose is to examine associations between comorbidity and predictors of health status among older rural breast cancer survivors. METHODS: Baseline data of 331 BCS age 55-90 years enrolled in the Rural Breast Cancer Survivors Study. Four surveys were used for data collection. Self-reported prescription medications were used as proxy for co-morbidity. Bivariate tests of association and multivariable recursive partitioning techniques were used for analysis. RESULTS: Mean number of prescription medication categories reported was 3.68 (SD = 2.3; range = 0-12). Common prescription categories were: anti-hormonal, anti-hypertensive, and cholesterol- reducing agents. 69% was overweight or obese. BMI >31 was significantly associated with both poorer physical and mental health. Multivariate analyses indicated physical health status was predicted by BMI, comorbid conditions, social support, and adverse changes in economic lifestyle. The same variables, with the exception of BMI, were predictors of mental health status. CONCLUSIONS: Assessing co-morbid conditions, mental health status, social support, and economic burden after breast cancer treatment may better inform cancer survivorship care and comprehensive geriatric assessment.

Predictors of attrition among rural breast cancer survivors.

Attrition can jeopardize both internal and external validity. The goal of this secondary analysis was to examine predictors of attrition using baseline data of 432 participants in the Rural Breast Cancer Survivors study. Attrition predictors were conceptualized based on demographic, social, cancer treatment, physical health, and mental health characteristics. Baseline measures were selected using this conceptualization. Bivariate tests of association, discrete-time Cox regression models and recursive partitioning techniques were used in analysis. Results showed that 100 participants (23%) dropped out by Month 12. Non-linear tree analyses showed that poor mental health and lack of health insurance were significant predictors of attrition. Findings contribute to future research efforts to reduce research attrition among rural underserved populations.

A revision of the quality of life-breast cancer survivors (QOL-BCS) instrument.

The importance of quality of life (QOL) measurement among breast cancer survivors (BCS) is well-recognized by researchers and clinicians. With data from 427 rural BCS, the authors used a combination of clinical expertise and statistical analysis to revise a 48-item measure of QOL specific to BCS. The revised 15-item measure showed adequate psychometric properties and provides the basis for a brief yet comprehensive multidimensional measure of QOL applicable to most BCS. Future work includes fine-tuning the measurement model and examining its generalizability among non-rural BCS.

Acceptability of delivering and accessing health information through text messaging among community health advisors.

BACKGROUND: Communication technologies can play a significant role in decreasing communication inequalities and cancer disparities by promoting cancer control and enhancing population and individual health. Studies have shown that technology, such as the mobile phone short message service (SMS) or text messaging, can be an effective health communication strategy that influences individuals' health-related decisions, behaviors, and outcomes. OBJECTIVE: The purpose of this study was to explore usage of communication technologies, assess the acceptability of mobile technology for delivery and access of health information, and identify cancer and health information needs among Deep South Network for Cancer Control trained Community Health Advisors as Research Partners (CHARPs). METHODS: A mixed-method design was used, and a triangulation protocol was followed to combine quantitative and qualitative data. Focus groups (4 focus groups; n=37) and self-administered surveys (n=77) were conducted to determine CHARPs mobile phone and text message usage. The objective was to include identification of barriers and facilitators to a mobile phone intervention. RESULTS: All participants were African American (37/37, 100%), 11/37 (89%) were women, and the mean age was 53.4 (SD 13.9; focus groups) and 59.9 (SD 8.7; survey). Nearly all (33/37, 89%) of focus group participants reported owning a mobile phone. Of those, 8/33 (24%) owned a smartphone, 22/33 (67%) had a text messaging plan, and 18/33 (55%) and 11/33 (33%) received and sent text messages several times a week or day, respectively. Similar responses were seen among the survey participants, with 75/77 (97%) reporting owning a mobile phone, and of those, 22/75 (30%) owned a smartphone, 39/75 (53%) had a text messaging plan, and 37/75 (50%) received and 27/75 (37%) sent text messages several times a week or day. The benefits of a text messaging system mentioned by focus group participants included alternative form of communication, quick method for disseminating information, and privacy of communication. The main barriers reported by both groups to using mobile technology to receive health information were cost and not knowing how to text message. Ways to overcome barriers were explored with focus group participants, and education was the most proposed solution. Majority of CHARPs were in favor of receiving a weekly text message that would provide cancer/health information. CONCLUSIONS: The findings from this study indicate that CHARPs are receptive to receiving text messages focusing on cancer/health information and would be likely to engage in mobile health research. These findings represent the first step in the development of an interactive mobile health program designed to provide cancer/health information and a support network for the Deep South Network Community Health Advisors as Research Partners (DSN CHARPs).

Does economic burden influence quality of life in breast cancer survivors?

GOALS: Economic burden is emerging as a crucial dimension in our understanding of adjustment to cancer during treatment. Yet, economic burden is rarely examined in cancer survivorship. The goal of this paper is to describe the effect of economic hardship and burden among women with breast cancer. METHODS: We examined baseline and follow-up (3 and 6 month) data reported by 132 stage I and II breast cancer survivors assigned to the Wait Control arm of the Breast Cancer Education Intervention (BCEI), a clinical trial of education and support interventions. Repeated measures models fitted with linear mixed models were used to examine relationships between aspects of economic burden and overall quality of life (QOL) scores. Structural equation models (SEM) were used to examine the relationship between overall economic burden and QOL. RESULTS: Nineteen economic events were reported. The proportion of survivors who reported increase in insurance premiums increased in the 6-month study period (p=.022). The proportion of survivors reporting change in motivation (p=.016), productivity (p=.002), quality of work (p=.01), days missed from work (p<.001) and sacrificing other things (p=.001) declined. An increase in economic events was significantly associated with poorer quality of life at each of the study time points. CONCLUSION: Economic burden of breast cancer extends into post-treatment survivorship. Better understanding of economic impact and managing economic burden may help maintain QOL.

The bottom line on wound care standardization.

North Mississippi Medical Center learned four important lessons in its effort to standardize wound care products and processes of care: Designate clinical champions. Limit the number of vendors that provide products for a specialty. Reduce the number of similar-function wound care products that are available for use, with decisions guided by clinicians. Provide transparent information related to cost, the intentions of the initiative, usage patterns, and the criteria for evaluation.

Out of pocket cost comparison between Caucasian and minority breast cancer survivors in the Breast Cancer Education Intervention (BCEI).

The purpose of this article is to: (1) describe out of pocket (OOP) costs among minority and Caucasian participants in the BCEI, the Breast Cancer Education Intervention, a randomized clinical trial of psychoeducational quality of life interventions for breast cancer survivors (BCS); and (2) examine the OOP burden, as measured by the proportion of income spent OOP, between the two racial/ethnic groups. We examined baseline OOP costs reported by 261 early-stage I and II breast cancer survivors who participated in the BCEI trial. Data were collected using the Breast Cancer Finances Survey and the Breast Cancer Sociodemographic and Treatment Tool. OOP costs averaged $316 per month since diagnosis. Direct medical costs were $281, and direct non-medical were $66. There were no significant differences in total OOP costs or direct medical and non-medical OOP costs between minority and Caucasian BCS. Minority BCS with incomes of $40,000 or less spent a greater proportion of income in total OOP and direct medical OOP costs (31.4 and 27% for BCS with incomes ≤ $20,000; 19.5 and 18.8% for BCS with incomes $20,001-40,0000) compared to their Caucasian counterparts (12.6 and 9.2% for BCS with incomes ≤ $20,000; 8.7 and 8.2% for BCS with incomes $20,001-40,0000). OOP costs can be a considerable burden for breast cancer survivors representing as much as 31% of monthly income depending on BCS' income levels. Future studies can investigate how this burden affects the quality of life of breast cancer survivors, especially minorities.

An application of longitudinal analysis with skewed outcomes.

BACKGROUND: Longitudinal designs are indispensable to the study of change in outcomes over time and have an important role in health, social, and behavioral sciences. However, these designs present statistical challenges particularly related to accounting for the variance and covariance of the repeated measurements on the same participants and to modeling outcomes that are not normally distributed. OBJECTIVES: The purpose of this study was to introduce a general methodology for longitudinal designs to address these statistical challenges and to present an example of an analysis conducted with data collected in a randomized clinical trial. In this example, the outcome of interest-monthly health-related out-of-pocket expenses incurred by breast cancer survivors-had a skewed distribution. METHODS: Common statistical approaches are for longitudinal analysis using linear and generalized linear mixed models are reviewed, and the discussed methods are applied to analyze monthly health-related out-of-pocket expenses. DISCUSSION: Although standard statistical software is available to conduct longitudinal analyses, training is necessary to understand and to take advantage of the various options available for model fitting. However, knowledge of the basics of the methodology allows assimilation and incorporation into practice of evidence from the numerous studies that use these designs.

The out of pocket cost of breast cancer survivors: a review.

INTRODUCTION: Out of pocket (OOP) costs add to the burden facing breast cancer survivors but remain an understudied area of costs. Current turbulent economic climate increases the urgency to better understand this burden. Few studies or systematic reviews focus on OOP costs. METHODS: PubMed search was conducted for articles in English containing: (1) MESH terms breast neoplasms and economics, and (2) words "breast cancer" and "cost" or "costs," "expenditure," or "out of pocket." Limits included: publication dates from January 1, 1980 to December 16, 2009, and populations aged > or = 45 years old. Articles were excluded based on title, abstract, and full text reviews. Citation searches and searches of reference lists were also conducted. Three articles were selected for this review. RESULTS: Medical direct OOP costs (e.g., for physician fees) ranged from $300 to $1,180 per month during active treatment, and were about $500 per month 1 year post diagnosis. Non-medical direct OOP costs (e.g., for transportation to doctor's office, parking etc.) ranged from $137 to $174 per month in the year post diagnosis; and $200-$509 per month 1 year or more after diagnosis. Different types of costs were identified. CONCLUSION: OOP costs represent a significant burden for survivors even after initial treatment. The nature and extent of OOP costs need further evaluation. IMPLICATIONS FOR CANCER SURVIVORS: OOP costs are rarely considered. However, as OOP costs affect the well being of cancer survivors, they should be understood more fully and possibly addressed in interventions aimed at improving quality of life.

Development of the Fertility and Cancer Project: an Internet approach to help young cancer survivors.

PURPOSE/OBJECTIVES: To describe the development of the Fertility and Cancer Project (FCP), an Internet approach to supplement information about fertility; describe FCP study participants' characteristics, fertility, cancer knowledge, and Internet use; and assess perceived information and support from the oncology team. DESIGN: Descriptive. SETTING: Internet, international. SAMPLE: 106 young survivors of breast cancer from eight countries. METHODS: FCP content was developed from the literature and interviews with breast cancer survivors, oncology professionals, and young women without cancer who were having fertility problems. Participants learned about the FCP through advocacy groups, cancer care providers, and Web searches. After enrollment, they completed five surveys: sociodemographic, breast cancer and health status, knowledge of fertility, Internet use, and the Medical Outcomes Study-Social Support Survey. MAIN RESEARCH VARIABLES: Sociodemographics, breast cancer, health status, fertility knowledge, Internet use, and social support. FINDINGS: Prior to diagnosis, most survivors had no fertility concerns, but more than 14% reported fertility problems. Following breast cancer diagnosis and treatment, 23 reported fertility problems. About half reported receiving little information about fertility options from the oncology team and were referred to a reproductive endocrinologist. Internet use to obtain support and health information was common. Most reported frequent computer use and Internet access in their homes. Participants were most knowledgeable of the general and treatment-related factors that could affect fertility; they were least knowledgeable of infertility treatment. CONCLUSIONS: Results provide preliminary evidence about the demographic, cancer treatment, and support characteristics of young survivors of breast cancer who seek online information about fertility. IMPLICATIONS FOR NURSING: The Internet is a promising format for engaging young cancer survivors who seek information about fertility and cancer. Future studies can evaluate FCP effectiveness in delivering education and support interventions.

Evaluation of the Fertility and Cancer Project (FCP) among young breast cancer survivors.

OBJECTIVE: Fertility and childbearing issues are the major quality of life concerns among young breast cancer survivors. Practical approaches are needed to convey reproductive health information. The Fertility and Cancer Project (FCP) is a dedicated research project that provides online reproductive health and fertility education. We report FCP participants' (a) changes in mood and functioning and (b) changes in knowledge of fertility and cancer from baseline to 6-month follow-up. METHODS: Participants completed five self-report baseline measures, accessed FCP content and participated in online discussions. At 6 months post FCP study entry, participants were asked to complete follow-up self-reports. RESULTS: One hundred and six breast cancer survivors from 8 countries participated in the FCP. Mean age at diagnosis was 34.3 years; mean time since diagnosis was 22 months. Significant change was detected in improved physical functioning (p=0.019) and social functioning (p=0.02). Significant changes were also noted in improved fertility knowledge (p=0.011). CONCLUSION: Preliminary evidence shows that young breast cancer survivors derive improved mood and knowledge benefit from FCP participation. Internet-based approach may be a viable format for engaging this population of cancer survivors.

Technology application to assist young survivors with fertility concerns.

OBJECTIVES: To provide an overview of the relationship of communication technology with cancer and fertility concerns; a brief description of one example of a project for young breast cancer survivors; a profile of women who participated in the project; and a consideration of the future role of oncology nurses in developing and utilizing technology to address cancer and fertility concerns. DATA SOURCES: Literature, experiential original data. CONCLUSION: Communication technology provides an ever increasing array of tools, but it is the oncology nurse who is in a pivotal position to maximize the benefits that patients realize through the use of such supportive technologies. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses are in a pivotal position to assure that communication technologies are appropriately used to provide access to evidence-based information about cancer and fertility.