The Other Side of Through: Young Breast Cancer Survivors' Spectrum of Sexual and Reproductive Health Needs.

The long-term reproductive health impact of cancer treatments is a concern for premenopausal women with a history of breast cancer. This study examined the unmet sexual and reproductive health needs of breast cancer survivors, as well as concordances and discordances in needs by childbearing status and race. We interviewed 17 women diagnosed with breast cancer between the ages of 18 and 45 years and living in North Carolina. To analyze these data, we used the Sort and Sift, Think and Shift© method, a multidimensional qualitative analysis approach. We learned that breast cancer survivors (a) received limited reproductive health information, (b) desired realistic expectations of conceiving postcancer, (c) struggled with adjusting to their altered physical appearance, and (d) had menopause symptoms that led to sexual health and quality of life issues. Breast cancer survivors are in need of and desire more education and resources to address their sexual and reproductive health concerns.

Optimizing research in symptomatic uterine fibroids with development of a computable phenotype for use with electronic health records.

BACKGROUND: Women with symptomatic uterine fibroids can report a myriad of symptoms, including pain, bleeding, infertility, and psychosocial sequelae. Optimizing fibroid research requires the ability to enroll populations of women with image-confirmed symptomatic uterine fibroids. OBJECTIVE: Our objective was to develop an electronic health record-based algorithm to identify women with symptomatic uterine fibroids for a comparative effectiveness study of medical or surgical treatments on quality-of-life measures. Using an iterative process and text-mining techniques, an effective computable phenotype algorithm, composed of demographics, and clinical and laboratory characteristics, was developed with reasonable performance. Such algorithms provide a feasible, efficient way to identify populations of women with symptomatic uterine fibroids for the conduct of large traditional or pragmatic trials and observational comparative effectiveness studies. Symptomatic uterine fibroids, due to menorrhagia, pelvic pain, bulk symptoms, or infertility, are a source of substantial morbidity for reproductive-age women. Comparing Treatment Options for Uterine Fibroids is a multisite registry study to compare the effectiveness of hormonal or surgical fibroid treatments on women's perceptions of their quality of life. Electronic health record-based algorithms are able to identify large numbers of women with fibroids, but additional work is needed to develop electronic health record algorithms that can identify women with symptomatic fibroids to optimize fibroid research. We sought to develop an efficient electronic health record-based algorithm that can identify women with symptomatic uterine fibroids in a large health care system for recruitment into large-scale observational and interventional research in fibroid management. STUDY DESIGN: We developed and assessed the accuracy of 3 algorithms to identify patients with symptomatic fibroids using an iterative approach. The data source was the Carolina Data Warehouse for Health, a repository for the health system's electronic health record data. In addition to International Classification of Diseases, Ninth Revision diagnosis and procedure codes and clinical characteristics, text data-mining software was used to derive information from imaging reports to confirm the presence of uterine fibroids. Results of each algorithm were compared with expert manual review to calculate the positive predictive values for each algorithm. RESULTS: Algorithm 1 was composed of the following criteria: (1) age 18-54 years; (2) either ≥1 International Classification of Diseases, Ninth Revision diagnosis codes for uterine fibroids or mention of fibroids using text-mined key words in imaging records or documents; and (3) no International Classification of Diseases, Ninth Revision or Current Procedural Terminology codes for hysterectomy and no reported history of hysterectomy. The positive predictive value was 47% (95% confidence interval 39-56%). Algorithm 2 required ≥2 International Classification of Diseases, Ninth Revision diagnosis codes for fibroids and positive text-mined key words and had a positive predictive value of 65% (95% confidence interval 50-79%). In algorithm 3, further refinements included ≥2 International Classification of Diseases, Ninth Revision diagnosis codes for fibroids on separate outpatient visit dates, the exclusion of women who had a positive pregnancy test within 3 months of their fibroid-related visit, and exclusion of incidentally detected fibroids during prenatal or emergency department visits. Algorithm 3 achieved a positive predictive value of 76% (95% confidence interval 71-81%). CONCLUSION: An electronic health record-based algorithm is capable of identifying cases of symptomatic uterine fibroids with moderate positive predictive value and may be an efficient approach for large-scale study recruitment.

Perceived barriers and preferred components for physical activity interventions in African-American survivors of breast or endometrial cancer with type 2 diabetes: the S.U.C.C.E.S.S. framework.

PURPOSE: African-American (AA) female cancer survivors share a disproportionate burden of diabetes compared to their white counterparts. Our objectives were to explore the perspectives of AA survivors with type 2 diabetes on perceived barriers to physical activity (PA) and preferences for a PA intervention and develop a framework for a PA program after cancer treatment. METHODS: Trained interviewers conducted semi-structured interviews with AA survivors of breast or endometrial cancer with diabetes (total n = 20; 16 breast, 4 endometrial). Thirteen open-ended questions were posed to stimulate discussions, which were audio recorded and transcribed verbatim. Two investigators independently reviewed transcriptions and extracted coded quotations to identify major themes. RESULTS: Median age of participants was 63 years. Nine themes were identified that focused on post-treatment physical symptoms (e.g., lymphedema, bone/joint pain, depression symptoms and self-motivation as barriers to PA, exercise routines tailored to physical limitations and peer partners and program leaders who understand their emotional health needs). The S.U.C.C.E.S.S. framework summarizes the survivors' preferences for an effective lifestyle intervention: Support efforts to maintain PA, Understand physical and depression symptoms, Collaborate with multi-disciplinary provider, Coordinate in-person intervention activities, Encourage partnerships among survivors for comorbidity risk reduction, develop Sustainable coping strategies for side effects of treatment, and Share local community resources. CONCLUSIONS: Survivors verbalized the need for a multi-disciplinary team to assist with their psychosocial needs and physical limitations to achieve their PA goals, as integrated into the S.U.C.C.E.S.S. IMPLICATIONS FOR CANCER SURVIVORS: The S.U.C.C.E.S.S. framework reflects the perspectives of survivors with type 2 diabetes and may help to inform post-treatment programs.

Peer support preferences among African-American breast cancer survivors and caregivers.

PURPOSE: Breast cancer mortality rates continue to improve due to advances in cancer control and treatment. However, gains in breast cancer survival rates vary by race. Psychosocial support systems can lead to improved health outcomes among cancer survivors. This study was a part of a larger study exploring the challenges that both African-American cancer survivors and caregivers face across the cancer continuum. The objective of this paper was to explore African-American breast cancer survivors' and caregivers' preferences regarding characteristics and qualities of Peer Connect guides to inform the development of a peer support program. METHODS: Forty-one African-American cancer survivors and caregivers participated in five focus groups lasting approximately 90 min. Participants were asked about what qualities or characteristics they would prefer in a peer support guide to make them feel comfortable talking with them. Focus group transcripts were analyzed using thematic content analysis, an iterative coding process. Themes were identified based on the research team's integrated and unified final codes. RESULTS: Twenty-two cancer survivors, 19 caregivers, and 3 individuals who were both survivors and caregivers participated in the focus groups. Participants discussed five preferences for peer support guides: (1) competency, (2) gender, (3) age, (4) cancer role status, and (5) relationship to participant. CONCLUSIONS: This study highlights cancer survivors' and caregivers' perceptions of characteristics needed for peer support providers that in turn can influence whether and how they participate in cancer support programs.

The Gestational Diabetes Management System (GooDMomS): development, feasibility and lessons learned from a patient-informed, web-based pregnancy and postpartum lifestyle intervention.

BACKGROUND: Gestational diabetes mellitus (GDM) contributes to the epidemic of diabetes and obesity in mothers and their offspring. The primary objective of this pilot study was to: 1) refine the GDM Management System (GooDMomS), a web-based pregnancy and postpartum behavioral intervention and 2) assess the feasibility of the intervention. METHODS: In phase 1, ten semi-structured interviews were conducted with women experiencing current or recent GDM mellitus GDM to garner pilot data on the web based intervention interface, content, and to solicit recommendations from women about refinements to enhance the GooDMomS intervention site. Interviews were audiotaped, transcribed and independently reviewed to identify major themes with Atlas.ti v7.0. In phase 2, a single-arm feasibility study was conducted and 23 participants were enrolled in the GooDMomS program. Participants received web lessons, self-tracking of weight and glucose, automated feedback and access to a message board for peer support. The primary outcome was feasibility, including recruitment and retention and acceptability. Secondary outcomes included the proportion of women whose gestational weight gain (GWG) was within the Institute of Medicine (IOM) guidelines and who were able to return to their pre-pregnancy weight after delivery. RESULTS: Comments from semi-structured interviews focused on: 1) usability of the on-line self-monitoring diary and tracking system, 2) access to a safe, reliable social network for peer support and 3) ability of prenatal clinicians to access the on-line diary for clinical management. Overall, 21 (91 %) completed the pregnancy phase. 15/21 (71 %) of participants were within the Institute of Medicine (IOM) guidelines for GWG. Sixteen (70 %) completed the postpartum phase. 7/16 (43 %) and 9/16 (56 %) of participants returned to their pre-pregnancy weight at 6 and 30 weeks postpartum, respectively. CONCLUSIONS: This study documents the feasibility of the GooDMomS program. The results can have implications for web technology in perinatal care and inform the current care paradigm for women with GDM. Findings are supportive of further research with recruitment of a larger sample of participants and comparison of the outcomes with the intervention and standard care. TRIAL REGISTRATION: The study was registered at ClinicalTrials.gov on May 15, 2012 under protocol no. NCT01600534 .

Cancer Support Needs for African American Breast Cancer Survivors and Caregivers.

Improved cancer screening and treatment advances have led to higher cancer survival rates in the United States. However, racial disparities in breast cancer survival persist for African American women who experience lower survival rates than white women. These disparities suggest that unmet needs related to survivorship still exist. This study focuses on the challenges that both African American cancer survivors and caregivers face across the cancer continuum. Five African American focus groups examined cancer survivor and caregiver support needs. Focus groups were recorded, transcribed, and uploaded into Atlas.ti. Thematic content analysis was applied to the text during the coding process. Themes were identified and emphasized based on the research team's integrated and unified final codes. Forty-one African Americans participated in five focus groups: 22 cancer survivors and 19 caregivers. Participants discussed five themes: (1) a culture that discourages the discussion of cancer; (2) lack of support services for African American cancer survivors; (3) lack of support services for cancer caregivers; (4) need for culturally appropriate cancer resources, including resources targeted at African American women; and (5) aspects that were helpful to cancer survivors and caregivers, including connecting with other survivors and caregivers, and having strong social support networks. We gained new insight into the unmet support needs for survivors and caregivers, especially when coping with the cancer experience continuum. While some cancer and caregiver support services exist, our study reveals a great need for services that incorporate the cultural differences that exist across races.

Implementing a one-on-one peer support program for cancer survivors using a motivational interviewing approach: results and lessons learned.

Peer Connect matches cancer survivors and caregivers (guides) with those currently experiencing cancer-related issues seeking support (partners). Motivational interviewing (MI)-based communication skills are taught to provide patient-centered support. There is little guidance about MI-based applications with cancer survivors who may have multiple coping needs. This paper addresses the results and lessons learned from implementing Peer Connect. Thirteen cancer survivors and two caregivers received a 2-day MI, DVD-based training along with six supplemental sessions. Nineteen partners were matched with guides and received telephone support. Evaluation included guide skill assessment (Motivational Interviewing Treatment Integrity Code) and 6-month follow-up surveys with guides and partners. Guides demonstrated MI proficiency and perceived their training as effective. Guides provided on average of five calls to each partner. Conversation topics included cancer fears, family support needs, coping and care issues, and cancer-related decisions. Partners reported that guides provided a listening ear, were supportive, and nonjudgmental. Limited time availability of some guides was a challenge. MI can provide support for cancer survivors and caregivers without specific behavioral concerns (e.g., weight and smoking). An MI support model was both feasible and effective and can provide additional support outside of the medical system.

Promoting fruit and vegetable consumption among members of black churches, Michigan and North Carolina, 2008-2010.

INTRODUCTION: Evidence-based health promotion programs that are disseminated in community settings can improve population health. However, little is known about how effective such programs are when they are implemented in communities. We examined community implementation of an evidence-based program, Body and Soul, to promote consumption of fruits and vegetables. METHODS: We randomly assigned 19 churches to 1 of 2 arms, a colon cancer screening intervention or Body and Soul. We conducted our study from 2008 through 2010. We used the RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) framework to evaluate the program and collected data via participant surveys, on-site observations, and interviews with church coordinators and pastors. RESULTS: Members of 8 churches in Michigan and North Carolina participated in the Body and Soul program. Mean fruit and vegetable consumption increased from baseline (3.9 servings/d) to follow-up (+0.35, P = .04). The program reached 41.4% of the eligible congregation. Six of the 8 churches partially or fully completed at least 3 of the 4 program components. Six churches expressed intention to maintain the program. Church coordinators reported limited time and help to plan and implement activities, competing church events, and lack of motivation among congregation members as barriers to implementation. CONCLUSIONS: The RE-AIM framework provided an effective approach to evaluating the dissemination of an evidence-based program to promote health. Stronger emphasis should be placed on providing technical assistance as a way to improve other community-based translational efforts.

Cancer screening patterns by weight group and gender for urban African American church members.

Obese white women have lower rates of cancer screening compared to non-obese women. This study will determine if a relationship exists between weight and adherence to cancer screening guidelines among African Americans. We used multivariate logistic regression to examine the relationship between being up-to-date with cancer screening (colorectal, breast, cervical, and prostate) and weight group (normal, overweight, obese I, obese II+) using data from older (age 50+) members (N = 955) of 20 African American churches in Michigan and North Carolina. CRC testing rates were examined using multiple definitions to account for differences in screening rates vs. polyp surveillance rates. After adjusting for confounders, we found relationships between weight group and up-to-date CRC (P = 0.04) and PSA (P = 0.004) testing for men and mammography (P = 0.03) for women. Compared to normal-weight men, obese I men were more likely to be up-to-date with CRC (OR 2.35, 95%CI 1.02-5.40) and PSA (OR 4.24 95%CI 1.77-10.17) testing. CRC screening rates were lower when individuals with polyps were excluded from the analysis; however, patterns by weight remained the same. Contrary to previous research, we did not find lower rates of cancer screening among obese African Americans. Instead, we found that normal-weight African American men had lower screening rates than any other group. As we did not consistently find lower screening rates among obese African Americans, targeting this group for increased screening promotion may not be the most effective way to reduce weight-related cancer disparities.

Peer Connect for African American breast cancer survivors and caregivers: a train-the-trainer approach for peer support.

Racial disparities in breast cancer survivorship are a major concern nationally. How survivors cope with cancer and re-frame their lives is a critical part of survivorship. Community-academic research partnerships may facilitate access to much-needed psychosocial support for African American survivors and caregivers in rural areas, but drivers of successful intervention implementation are not well understood. The purpose of this study was to describe the training and evaluation of Community Coaches and Guides (i.e., peer supporters) using the Peer Connect program for African American breast cancer survivors and caregivers. Community engagement strategies were used to implement the training component of Peer Connect, an evidence-based program grounded in the Diffusion of Innovation Theory utilizing motivational interviewing techniques (MI) and a "train-the-trainer" model. Quantitative and qualitative methods examined implementation outcomes of feasibility, MI fidelity, and acceptability-precursor outcomes that must be achieved before examining intervention impact vis-à-vis changes in support care. Training was feasible to implement and replicable by the trained Community Coaches. Beyond feasibility and replicability, success was modest regarding MI fidelity. Benefits (e.g., serving as role models and having safe sources of support) and lessons learned (e.g., need for additional quality control) were identified as both facilitators and barriers to implementation and as factors that could impact the effectiveness of community-engaged programs to improve survivorship outcomes. Peer Connect, like other programs that employ community-engagement strategies, holds promise to meet the psychosocial support needs of diverse rural cancer survivor populations.

Cluster Randomized Trial of a Church-Based Peer Counselor and Tailored Newsletter Intervention to Promote Colorectal Cancer Screening and Physical Activity Among Older African Americans.

Action Through Churches in Time to Save Lives (ACTS) of Wellness was a cluster randomized controlled trial developed to promote colorectal cancer screening and physical activity (PA) within urban African American churches. Churches were recruited from North Carolina (n = 12) and Michigan (n = 7) and were randomized to intervention (n = 10) or comparison (n = 9). Intervention participants received three mailed tailored newsletters addressing colorectal cancer screening and PA behaviors over approximately 6 months. Individuals who were not up-to-date for screening at baseline could also receive motivational calls from a peer counselor. The main outcomes were up-to-date colorectal cancer screening and Metabolic Equivalency Task (MET)-hours/week of moderate-vigorous PA. Multivariate analyses examined changes in the main outcomes controlling for church cluster, gender, marital status, weight, and baseline values. Baseline screening was high in both intervention (75.9%, n = 374) and comparison groups (73.7%, n = 338). Screening increased at follow-up: +6.4 and +4.7 percentage points for intervention and comparison, respectively (p = .25). Baseline MET-hours/week of PA was 7.8 (95% confidence interval [6.8, 8.7]) for intervention and 8.7 (95% confidence interval [7.6, 9.8]) for the comparison group. There were no significant changes (p = .15) in PA for intervention (-0.30 MET-hours/week) compared with the comparison (-0.05 MET-hours/week). Among intervention participants, PA increased more for those who participated in church exercise programs, and screening improved more for those who spoke with a peer counselor or recalled the newsletters. Overall, the intervention did not improve PA or screening in an urban church population. These findings support previous research indicating that structured PA opportunities are necessary to promote change in PA and churches need more support to initiate effective peer counselor programs.

The use of motivational interviewing to promote peer-to-peer support for cancer survivors.

Motivational interviewing (MI) as a counseling approach has gained empirical support for its use in a number of settings and for a variety of behaviors. However, the majority of practitioners trained to use MI have been professionals rather than laypeople. This article presents the rationale, design, and evaluation of an MI-based training for cancer survivors and caregivers to deliver peer support. The training and evaluation of the peers ("guides") to encourage practice and increase research knowledge for using MI-based peer support models for cancer care are discussed. Thirteen cancer survivors and two caregivers received two-day DVD-based MI training, as well as supplemental monthly sessions for six months. The guides demonstrated MI proficiency as assessed by the MI Treatment Integrity scale and other process evaluation assessments. MI can be adapted to train laypeople to provide support for groups such as cancer survivors.