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.

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.

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.

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.

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.

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.

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.

Patrick McNees School of Health Professions University of Alabama, Birmingham, AL Abstract: 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. 2013 Wiley Periodicals, Inc.

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.

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.

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).

Aims: To describe the retention of rural women in the Rural Breast Cancer Survivors (RBCS) Intervention.Background: Few studies describe strategies and procedures for retention of participants enrolled in cancer research. Fewer studies focus on underserved rural cancer survivors.Methods: A descriptive design was used. A conceptual model of retention based on three factors: researcher, participant, and context with primary, secondary, and tertiary strategies was used to unify the data.Results: 432 women enrolled in the RBCS study, of which 332 (77%) were retained and completed the 12 month study. Favorable retention strategies included: run-in period, persistent attempts to re-contact hard to reach, recruitment and enrollment tracking database, and a trusting and supportive relationship with the research nurse.Conclusion: A conceptual model of retention with differential strategies can maintain participant retention in a longitudinal research study. (C) 2013 Elsevier Inc. All rights reserved.

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.

There is a paucity of methods that examine the relative difficulty or ease of access to research. The Index of Research Access was designed to provide a quantitative index allowing a determination of the probable ease or difficulty in accessing research participation for either an individual compared to a reference group, or for a group of individuals compared to another group or reference group. The aims of this paper are to (1) describe the major factors considered in the development of the Index of Research Access, an index of research accessibility; (2) provide the rationale and formula for the Index of Research Access; (3) describe the testing and application of the Index of Research Access using a sample of 239 women participating in a longitudinal trial of psychoeducational support interventions for breast cancer survivors; and (4) consider implications of the Index of Research Access for other research endeavors.

Objective: Infertility is a severe and often underestimated consequence of successful treatment for breast cancer.Ensuring young breast cancer survivors receive patient-centered health information on the impact of treatment on fertility and fertility preservation options in a timely manner is a critical component of high quality nursing care.The objective of this manuscript is to report the process used to develop and examine the reliability and validity of an instrument to measure a breast cancer survivor's self-assessed knowledge of fertility and fertility preservation.Design: A scale development and descriptive study.Setting: Online and global.Participants: Ninety-two young breast cancer survivors (ages 25-45 years).Methods: Participants completed the Knowledge of Fertility and Fertility Preservation (KF) Scale as part of their participation in a larger study, the Fertility Cancer Project (FCP).Results: An exploratory factor analysis revealed five domains: normal reproductive function; general information about fertility; cancer treatment factors affecting fertility; infertility information; and alternative parenting options.A confirmatory factor analysis confirmed the validity of the construct with a demonstrated good fit between the factor structure of the new scale and the observed data.Many participants self-assessed their overall knowledge of fertility and fertility preservation as "a little" and the majority rated their knowledge of infertility information as "a little". Conclusion:The KF Scale can be used to provide useful information to support health care professionals in the development of patient-centered education that is responsive to the unique needs of each young breast cancer survivor.The initial testing of the KF Scale indicates that it is reliable and easy to use; however, additional testing with larger and more diverse groups of breast cancer survivors is needed to further determine reliability and validity.The KF Scale could also be examined as a possible measure of self-assessed knowledge of fertility and fertility preservation across diverse groups of young cancer survivors, such as survivors of Hodgkin's disease or childhood leukemia.

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. (C) 2011 Elsevier Inc. All rights reserved.

SummaryThe breast cancer education intervention (BCEI) is a tailored psychoeducational intervention programme aiming to improve the quality of life of breast cancer survivors. Borrowing the idea of recursive partitioning and following the convention of classification and regression trees, an exploratory procedure, termed interaction trees, is proposed to understand better the differential effects of the BCEI on longitudinal quality-of-life data. The resultant tree model identifies several objectively defined subgroups: in some groups the BCEI is quite effective whereas in others it may not be. Based on the final tree structure, a permutation test is used to assess the overall treatment-by-covariate interaction. In addition, a variable importance ranking feature is facilitated via random forests of interaction trees to help to determine important effect modifiers of the BCEI.

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.

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.