Jennifer S. Ford

Health Behaviors, Medical Care, and Interventions to Promote Healthy Living in the Childhood Cancer Survivor Study Cohort

Childhood cancer survivors are at risk for medical and psychosocial late effects as a result of their cancer and its therapy. Promotion of healthy lifestyle behaviors and provision of regular risk-based medical care and surveillance may modify the evolution of these late effects. This manuscript summarizes publications from the Childhood Cancer Survivor Study (CCSS) that have examined health behaviors, risk-based health care, and interventions to promote healthy lifestyle practices. Long-term survivors use tobacco and alcohol and have inactive lifestyles at higher rates than is ideal given their increased risk of cardiac, pulmonary, and metabolic late effects. Nearly 90% of survivors report receiving some form of medical care. However, only 18% report medical visits related to their prior cancer that include discussion or ordering of screening tests or counseling on how to reduce the specific risks arising from their cancer. One low-cost, peer-driven intervention trial has been successful in improving smoking cessation within the CCSS cohort. On the basis of data from CCSS investigations, several trials to promote improved medical surveillance among high-risk groups within the cohort are underway. Despite their long-term risks, many survivors of childhood cancer engage in risky health behaviors and do not receive adequate risk-based medical care.

General internists' preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey.

Context Most adult childhood cancer survivors (CCSs) receive health care from primary care physicians. Contribution This survey of general internists found that about half provided care for adult CCSs but most had never received a treatment summary from a referring cancer center. Internists were somewhat uncomfortable caring for survivors of Hodgkin lymphoma, acute lymphoblastic leukemia, and osteosarcoma. In a vignette case, most general internists did not recommend appropriate surveillance for a Hodgkin lymphoma survivor. Implication Although general internists see adult CCSs, many are unfamiliar with recommended surveillance practices and lack coordinated communication processes with oncologists and cancer centers. The Editors More than 350 000 childhood cancer survivors (CCSs) live in the United States, and this population continues to expand (1, 2). In 2002, the Institute of Medicine recognized the substantial health risks facing CCSs, including end-organ dysfunction, second malignant neoplasms, and cognitive impairment (39). The Institute of Medicine recommended lifelong, risk-based health care to mitigate these late effects. Such care includes a systematic plan for periodic surveillance and prevention that is adapted to the specific risks from the individual patients previous cancer, therapy, genetic predisposition, health behaviors, and comorbid conditions (3, 10). In response, various international groups created and disseminated guidelines for the risk-based care of CCSs (1115). In 2003, the North American Childrens Oncology Group (COG) published the Long-Term Follow-Up (LTFU) Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer, which provide surveillance guidelines based on survivors exposure to cancer therapies (11, 15). Yet, more than a decade after the Institute of Medicine report, most CCSs are not engaged in appropriate risk-based health care (1620). Several factors contribute to this lack of engagement. Survivors treated at a young age often have limited knowledge of the therapies they had and their consequences (21). Many adult CCSs have difficulty obtaining adequate health insurance (2126). Finally, transitions from pediatric to adult-care providers and from tertiary care cancer centers to community clinicians contribute to suboptimal care (27, 28). Previous studies of pediatric oncologists suggest that insufficient understanding of late effects and publically available surveillance guidelines contribute to ineffectual transitions (23, 2931). More than 80% of adult CCSs receive health care from a primary care physician (PCP) in their community, yet our understanding of the care delivered by PCPs to this growing and clinically challenging population is limited (16). As more than half of the adult-focused PCPs in the United States are general internists (32), we conducted a nationally representative survey of practicing general internists to assess their attitudes and knowledge about the care of CCSs. Methods Study Population Using methods from previous studies (33, 34), we selected a national probability sample of practicing physicians who listed general internal medicine as their primary specialty from the American Medical Association Physician Masterfile, a database intended to include all physicians in the United States. We selected 2000 physicians from approximately 148 000, giving a sampling percentage of 1.35% (or 1 physician sampled of every 74 physicians in the population). We obtained approval from the University of Chicagos institutional review board before study initiation. Survey Mailings Surveys were mailed to physicians between September 2011 and August 2012, with a prenotification letter and postcard reminder. Up to 4 mailings were sent to increase response rates. A

Screening and Surveillance for Second Malignant Neoplasms in Adult Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

10 incentive was included in the first mailing. The third mailing included a

Increasing rates of breast cancer and cardiac surveillance among high-risk survivors of childhood Hodgkin lymphoma following a mailed, one-page survivorship care plan.

5 incentive, and the fourth and final mailing included

Exposure to mass media health information, skin cancer beliefs, and sun protection behaviors in a United States probability sample

20 on receipt of a completed survey. During the fourth mailing, physicians were called if a phone number was available. We used the Google search engine (Google, Mountainview, California) to identify discrepant addresses from data provided by the American Medical Association Physician Masterfile for nonrespondents. If an alternate address was identified, subsequent mailings were sent to the new address. Internists were excluded from the analytic sample if surveys were returned 2 or more times with incorrect addresses or if participants were identified as deceased, retired, or no longer practicing internal medicine. Survey Instrument The survey was derived from previous surveys about physician attitudes and knowledge about cancer care (29, 35, 36). A CCS was defined as a patient diagnosed with cancer at or before age 21 years, at least 5 years from cancer therapy completion, and who was cancer free. This definition was chosen to capture physician experiences with patients who had survived the period in which relapse is the predominant health threat and is consistent with terminology used by several groups that research the long-term effects of pediatric cancer (for example, the North American Childhood Cancer Survivor Study and the British Childhood Cancer Survivor Study) (8, 37). The 18-item survey assessed respondents demographics, medical education, and practice structure. We asked internists about the number of CCSs they had cared for in the past 5 years and how frequently they had received a cancer treatment summary (documenting the survivors diagnosis, cancer therapy, and follow-up plan) from a referring cancer center. We assessed comfort level with caring for survivors of acute lymphoblastic leukemia, Hodgkin lymphoma, and osteosarcoma with a 7-point Likert scale, with scores ranging from 1 (very uncomfortable) to 7 (very comfortable). A similar Likert scale assessed familiarity with the available monitoring guidelines for childhood, adolescent, and young adult cancer survivors (scores ranging from 1 [very unfamiliar] to 7 [very familiar]). We asked internists whether they prefer to care for survivors independently, in consultation with a cancer centerbased physician or LTFU clinic, or by referral to a cancer centerbased physician or another PCP. The survey included a hypothetical vignette describing a 29-year-old female survivor of Hodgkin lymphoma whose therapy included mantle radiation and anthracycline chemotherapy (cumulative dose, 150 mg/m2) at age 16 years. Using a set of preselected responses, we asked internists about their approach to breast cancer and cardiac and thyroid surveillance for this patient. We compared responses with the COG LTFU guidelines (15). Finally, we asked internists to rate the usefulness of 11 tools that might assist them in independently caring for such a survivor using a scale ranging from 1 (not at all useful) to 4 (very useful). Statistical Analysis Descriptive statistics included frequency counts and percentages, means with SDs, and medians with ranges. Chi-square tests or 2-sample t tests were conducted for comparisons between groups. We calculated Spearman rank correlation coefficients when determining associations between 2 continuous or ordinal variables. We fit multivariate linear and logistic regression models to examine internists comfort with caring for CCSs and knowledge of surveillance guidelines, respectively. Covariates, chosen a priori, were sex, years of practice, number of patients seen per week, having seen at least 1 CCS in the past 5 years, and practice environment. Age was highly correlated with years of practice (r = 0.92) and was not included in the multivariate models. All analyses were conducted by using Stata software, version 12 (StataCorp, College Station, Texas). Role of the Funding Source The National Cancer Institute provided financial support for this work through a grant to Dr. Henderson. The funding source played no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript. Results We received 1110 completed questionnaires out of 1801 potential respondents (response rate, 61.6%) (Appendix Figure). Characteristics of the participating internists are detailed in Table 1. We found no statistically significant differences in sex, age, or geographic location of practice between respondents and nonrespondents. Appendix Figure. Study flow diagram. AMA = American Medical Association. Table 1. Demographic and Practice Characteristics of Respondents and Nonrespondents Fifty-one percent of respondents reported having cared for at least 1 adult CCS in the 5 years preceding the survey (Table 1). Among this subset, 72.0% reported never having received a treatment summary. Only 61 internists (5.5%) preferred to care for CCSs independently. Most (84.0%) preferred to work in collaboration with a cancer centerbased physician or LTFU clinic, and 10.5% indicated that they would refer CCSs to a cancer centerbased physician, LTFU program, or another PCP. On average, internists reported being somewhat uncomfortable caring for CCSs. Only 36.9%, 27.0%, and 25.0% of respondents indicated that they were somewhat comfortable or comfortable (Likert score 5) caring for Hodgkin lymphoma, acute lymphoblastic leukemia, and osteosarcoma survivors, respectively. In multivariate analyses, comfort levels were higher among internists with a larger patient volume, those who had seen at least 1 CCS in the preceding 5 years, and men (Appendix Table 1). Appendix Table 1. Multivariate Linear Regression on Comfort Levels* With CCSs General Internists Familiarity and Knowledge of Published LTFU Guidelines Internists reported being generally unfamiliar with available surveillance guidelines for CCSs. Only 12.0% stated that they felt at least somewhat familiar with available guidelines (Likert score 5). Knowledge of available surveillance guidelines for breast cancer and cardiac and thyroid function was assessed by using the

Adherence to colorectal cancer screening in mammography-adherent older women

BACKGROUND Survivors of childhood cancer may develop a second malignant neoplasm during adulthood and therefore require regular surveillance. OBJECTIVE To examine adherence to population cancer screening guidelines by survivors at average risk for a second malignant neoplasm and adherence to cancer surveillance guidelines by survivors at high risk for a second malignant neoplasm. DESIGN Retrospective cohort study. SETTING The Childhood Cancer Survivor Study (CCSS), a 26-center study of long-term survivors of childhood cancer that was diagnosed between 1970 and 1986. PATIENTS 4329 male and 4018 female survivors of childhood cancer who completed a CCSS questionnaire assessing screening and surveillance for new cases of cancer. MEASUREMENTS Patient-reported receipt and timing of mammography, Papanicolaou smear, colonoscopy, or skin examination was categorized as adherent to the U.S. Preventive Services Task Force guidelines for survivors at average risk for breast or cervical cancer or the Childrens Oncology Group guidelines for survivors at high risk for breast, colorectal, or skin cancer as a result of cancer therapy. RESULTS In average-risk female survivors, 2743 of 3392 (80.9%) reported having a Papanicolaou smear within the recommended period, and 140 of 209 (67.0%) reported mammography within the recommended period. In high-risk survivors, rates of recommended mammography among women were only 241 of 522 (46.2%) and the rates of colonoscopy and complete skin examinations among both sexes were 91 of 794 (11.5%) and 1290 of 4850 (26.6%), respectively. LIMITATIONS Data were self-reported. Participants in the CCSS are a selected group of survivors, and their adherence may not be representative of all survivors of childhood cancer. CONCLUSION Female survivors at average risk for a second malignant neoplasm show reasonable rates of screening for cervical and breast cancer. However, surveillance for new cases of cancer is very low in survivors at the highest risk for colon, breast, or skin cancer, suggesting that survivors and their physicians need education about their risks and recommended surveillance. PRIMARY FUNDING SOURCE The National Cancer Institute, National Institutes of Health, and the American Lebanese Syrian Associated Charities.

A cross-sectional study of the psychosexual impact of cancer-related infertility in women: third-party reproductive assistance

Hodgkin lymphoma (HL) survivors face substantially elevated risks of breast cancer and cardiovascular disease. They and their physicians are often unaware of these risks and surveillance recommendations.

Predictors of perceived risk for colon cancer in a national probability sample in the United States.

BACKGROUND The mass media is increasingly important in shaping a range of health beliefs and behaviors. OBJECTIVE We examined the association among mass media health information exposure (general health, cancer, sun protection information), skin cancer beliefs, and sun protection behaviors. METHODS We used a general population national probability sample comprised of 1633 individuals with no skin cancer history (Health Information National Trends Survey, 2005, National Cancer Institute) and examined univariate and multivariate associations among family history of skin cancer, mass media exposure, skin cancer beliefs, and sun protection (use of sunscreen, shade seeking, and use of sun-protective clothing). RESULTS Mass media exposure was higher in younger individuals, and among those who were white and more highly educated. More accurate skin cancer beliefs and more adherent sun protection practices were reported by older individuals, and among those who were white and more highly educated. Recent Internet searches for health or sun protection information were associated with sunscreen use. LIMITATIONS Study limitations include the self-report nature of sun protection behaviors and cross-sectional study design. CONCLUSION We identify demographic differences in mass media health exposure, skin cancer beliefs, and sun protection behaviors that will contribute to planning skin cancer awareness and prevention messaging across diverse population subgroups.

Knowledge of Colon Cancer Screening in a National Probability Sample in the United States

Colorectal cancer (CRC) is the third leading cause of cancer mortality among women. Screening can prevent the development of CRC or diagnose early disease when it can effectively be cured, however existing screening methods are underutilized. In this study, we examined the utility of an updated Health Belief Model to explain CRC screening adherence. The present study included 280 older women seeking routine mammography at a large, urban breast diagnostic facility. Overall, 50% of women were adherent to CRC screening guidelines. Multiple regression indicated that self-efficacy, physician recommendation, perceived benefits of and perceived barriers to screening accounted for 40% of variance in CRC screening adherence. However, there was no evidence for two mediational models with perceived benefits and perceived barriers as the primary mechanisms driving adherence to CRC screening. These findings may inform both future theoretical investigations as well as clinical interventions designed to increase CRC screening behavior.

Psychosexual Functioning Among Adult Female Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

IntroductionThis study empirically assessed emotional and sexual functioning, reproductive concerns, and quality of life (QOL) of cancer-related infertile women in comparison to those without a cancer history and explored awareness of third-party reproduction options in cancer survivors.MethodsOne hundred twenty-two cancer survivors (Gynecologic and Bone Marrow/Stem Cell Transplant) with cancer-related infertility and 50 non-cancer infertile women completed a self-report survey assessing: reproductive concerns (RCS), mood (CES D), distress (IES), sexual function (FSFI), menopause (SCL), QOL (SF 12), relationships (ADAS), and exploratory (reproductive options) items.ResultsCancer survivors exhibited greater sexual dysfunction and lower physical QOL than non-cancer infertile women (P < 0.001). No significant group differences were identified for mood (CES-D), mental health QOL (SF-12), reproductive concerns (RCS), and relationship satisfaction (ADAS). All groups scored in the FSFI range of sexual dysfunction, and with RCS scores above published means. Multivariate comparisons showed comparable depression and distress levels for all groups, but cancer survivors had poorer physical QOL [F(5,146)=4.22, P < 0.01]. A significant effect was also found for knowledge of third-party reproductive options on depression and distress levels [F(3,97)=4.62,P < 0.01]. Adjusted means demonstrated higher depression and distress scores for women with perceived unmet informational needs.ConclusionsOverall, loss of fertility was an emotionally challenging experience for women regardless of its cause. Cancer survivors were found to have lower scores of physical QOL and sexual function than non-cancer infertile women. Unmet informational needs about reproductive options appeared to be associated with negative mood and increased distress in cancer survivors.Implications for cancer survivorsTargeted interventions to increase knowledge about reproductive options could be of great assistance to women pursuing parenthood in cancer survivorship. Additionally, intervention studies to improve sexual functioning and QOL in women with cancer-related infertility should be a priority of future research.