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Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study

Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer... Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study Kevin C. Oeffi nger, MD ABSTRACT Ann C. Mertens, PhD BACKGROUND We wanted to determine the type of outpatient medical care Melissa M. Hudson, MD reported by young adult survivors of childhood cancer and to examine factors associated with limited medical care. James G. Gurney, PhD Jacqueline Casillas, MD METHODS We analyzed data from 9,434 adult childhood cancer survivors Hegang Chen, PhD enrolled in a retrospective cohort study who completed a baseline questionnaire. They had a mean age of 26.8 years (range 18 to 48 years), 47% were female, John Whitton, MS 12% were minorities, and 16% were uninsured. Four self-reported outcome mea- Mark Yeazel, MD, MPH sures were used to determine outpatient medical care in a 2-year period: general Yutaka Yasui, PhD contact with the health care system, general physical examination, cancer-related Leslie L. Robison, PhD medical visit, and medical visit at a cancer center. Department of Family Practice and Com- RESULTS Eighty-seven percent reported general medical contact, 71.4% a general munity Medicine, University of Texas South- physical examination, 41.9% a cancer-related visit, and 19.2%, a visit at a cancer western Medical Center, Dallas, Tex center. Factors associated with not reporting a general physical examination, a Department of Pediatrics, School of Medicine, University of Minnesota, cancer-related visit, or a cancer center visit included no health insurance (odds Minneapolis, Minn ratio [OR] = 2.34; 95% confi dence interval [CI], 1.97-2.77), male sex (OR = Departments of Hematology–Oncology 1.65; 95% CI, 1.44-1.88), lack of concern for future health (OR = 1.57; 95% CI, and Behavioral Medicine, St. Jude Children’s 1.36-1.82), and age 30 years or older in comparison with those 18 to 29 years Research Hospital, Memphis, Tenn (OR = 1.56; 95% CI, 1.35-1.81). The likelihood of reporting a cancer-related Department of Pediatrics, School of Medi- visit or a general physical examination decreased signifi cantly as the survivor aged cine, University of California, Los Angeles, or the time from cancer diagnosis increased. This trend was also signifi cant for Calif 5 those treated with therapies associated with substantial risk for cardiovascular dis- Division of Biostatistics, School of ease or breast cancer. Public Health, University of Minnesota, Minneapolis, Minn CONCLUSIONS Primary care physicians provide health care for most of this grow- Cancer Prevention Research Program, Fred ing high-risk population. To optimize risk-based care, it is critical that cancer cen- Hutchinson Cancer Research Center, Seattle, ters and primary care physicians develop methods to communicate effectively and Wash longitudinally. Department of Family Practice and Community Health, School of Medicine, Ann Fam Med 2004;2:61-70. DOI: 10.1370/afm.26. University of Minnesota, Minneapolis, Minn INTRODUCTION ith improvements in treatment during the recent decades, sur- vival rates for childhood cancer have increased to more than Confl icts of interest: none reported W70%, resulting in an increasing population of long-term sur- 1 2 vivors. Currently, 1 in 900 young adults is a childhood cancer survivor. With this growth in survivorship, there has been a developing recognition CORRESPONDING AUTHOR of the potential long-term health problems related to cancer therapy. All Kevin C. Oeffi nger, MD Department of Family Practice and organ systems can be affected by radiation, chemotherapy, or surgery, lead- Community Medicine ing to a wide array of potential late effects. University of Texas Southwestern Medical Long-term survivors of childhood cancer face considerable risk for Center at Dallas late mortality, morbidity, and adverse health status secondary to their 6263 Harry Hines Blvd previous cancer therapy. In a retrospective analysis of 20,227 childhood Dallas, TX 75390-9067 kevin.oeffi nger@utsouthwestern.edu cancer patients who had survived 5 years, Mertens et al reported an ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 61 ADULT CHILDHOOD CANCER SURVIVORS absolute excess risk for mortality from second cancers METHODS (not including late recurrences), cardiac causes, and pulmonary causes of 1.26, 0.27, and 0.015 deaths, Subjects respectively, per 1,000 person-years. Morbidity sec- The Childhood Cancer Survivor Study (CCSS) is a ondary to late effects of chemotherapy or radiation is multi-institutional study of patients who survived for frequent and often serious. In 5 studies reporting on 5 or more years after diagnosis of a cancer. Eligibility long-term survivors with a median age ranging from 15 criteria for the cohort included (1) confi rmed diagnosis to 23 years, 58% to 69% had at least one late effect of of 1 of the 8 primary cancer groups (leukemia, central therapy, with 25% to 30% experiencing a moderate to nervous system malignancies, Hodgkin’s disease, non- 4-8 9 severe late complication. Hudson et al found that Hodgkin’s lymphoma, kidney tumor, neuroblastoma, 44% of adult survivors of childhood cancer reported soft tissue sarcoma, or bone tumor); (2) diagnosis and at least one domain of their health status to be moder- initial treatment at 1 of the 25 collaborating institu- ately to extremely adversely affected. tions; (3) diagnosis between January 1, 1970, and Survivors can benefi t from early diagnosis and inter- December 31, 1986; (4) age less than 21 years at diag- vention or preventive care targeted at reducing risk nosis; and (5) survived at least 5 years from diagnosis. for late effects, such as second malignant neoplasms of The total eligible sample fulfi lling these criteria was 10,11 12,13 14,15 the breast, thyroid, and skin after radiation 20,276. Relying upon the last known address provided 16,17 therapy; altered bone metabolism and osteoporosis ; by the treating institution, a total of 7,913 (39%) obesity-related health problems (dyslipidemia, hyper- required tracing to locate the eligible survivor or his 18-20 tension, diabetes mellitus, cardiovascular disease) ; or her parents. Of those survivors who required trac- liver failure secondary to chronic hepatitis C after ing, 4,917 (62%) were located; 2,996 (38%) were not blood transfusion ; and endocrine dysfunction after despite intensive tracing efforts and were subsequently 22,23 chest-mantle radiation. Longitudinal care addressing classifi ed as lost to follow-up. The result was a total other late effects, such as infertility, musculoskeletal sample of 17,280 eligible survivors who were contacted problems, cognitive dysfunction, and psychosocial regarding study participation. issues, may also improve survivors’ health outcomes and The CCSS protocol and contact documents were quality of life. reviewed and approved by the Human Subjects Com- Most late effects increase in incidence with age, mittee at each participating institution. Baseline data often becoming clinically apparent decades after ther- were collected by mail or telephone for members of apy. Because this window of time offers the potential the study cohort using a 24-page questionnaire that to modify severity of health outcomes by prevention or was designed to capture a wide range of information, early intervention, there is consensus that survivors of including sociodemographic characteristics, health hab- childhood cancer should have longitudinal risk-based its, chronic medical conditions, and access and utiliza- 4-8,24-26 health care. In a recent report, Ensuring Quality tion of medical care. Information on the characteristics Cancer Care, the National Cancer Policy Board, estab- of the original cancer diagnosis was obtained from the lished through the Institute of Medicine, recommended treating institution. For all CCSS respondents who lifelong follow-up of all cancer survivors as a key com- returned a signed medical release, information concern- ponent to improving the quality of cancer care. Expert ing primary cancer therapy and initial treatment was opinion, based on limited evidence, recommends that collected. Copies of the baseline questionnaire and the risk-based health care include a systematic plan for treatment abstraction form used in data collection are screening, surveillance, and prevention, incorporating a available for review and can be downloaded at http:// survivor’s risks based on the previous cancer or cancer www.cancer.umn.edu/ccss. Further details regarding the therapy, genetic predispositions, lifestyle behaviors, methodology and cohort characteristics were published 24-26,28 29 and comorbid health conditions. previously. To date, the health care utilization patterns of young adult survivors have not been reported. It is Outcome Measures unknown what percentage seek or receive medical care Four dichotomous outcome measures were used to related to their previous cancer, and whether this care describe different types of outpatient medical care is risk based. The purpose of this exploratory study was reported by survivors in a 2-year period: (1) general to use a large cohort of young adult survivors to (1) or nonspecifi c contact with a health care provider, (2) determine the type of outpatient medical visits that general physical examination, (3) cancer-related medi- survivors report in a 2-year period, and (2) examine cal visit, and (4) medical visit at a cancer center. These factors associated with limited follow-up or medical outcomes were not mutually exclusive. To ascertain visits. general or nonspecifi c medical contact, respondents ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 62 ADULT CHILDHOOD CANCER SURVIVORS were asked whether they had contact with a physician, years or older at interview. The demographics and can- nurse, or other health care provider. Such contact could cer treatment of the 9,434 adult survivors are provided include a visit to a physician’s offi ce or a telephone call. in Tables 1 and 2. The mean age at time of baseline To ascertain cancer-related medical visits and cancer questionnaire was 26.8 years (range 18 to 48 years), center visits, respondents were asked how many of the and the mean interval from diagnosis to completion of visits to a physician’s offi ce were related to their previ- questionnaire was 17.4 years (range 6.4 to 29.4 years). ous cancer and whether any of the visits were at an T Tables 1 and 2 show the percentage of respon- ables 1 oncology (cancer) center. The content or additional dents who reported the 4 types of medical visits by details about the medical visits were not ascertained, each of the demographic and cancer-related variables. and it is possible that they incorporated screening The older the survivor, the less likely he or she was related to the previous cancer treatment. to report a general physical examination (P <.001), a cancer-related visit (P <.001), or a visit to a cancer Independent Variables center (P <.001). Similarly, as the interval from cancer Sociodemographic variables included age at time of diagnosis increased, the survivors were less likely to interview, sex, race and ethnicity, education, health report these types of visits (P <.001 for each outcome; insurance, and household income. Because the number Figure 1). For survivors who reported a general physi- of black, non-Hispanic and Hispanic survivors was cal examination, the likelihood of also reporting a small, they were combined with other race and ethnic cancer-related visit decreased with age (P <.001) or minorities and analyzed as a single group. Cancer- with an increasing interval from cancer diagnosis (P related variables included cancer type, age at diagnosis, <.001). The longer the interval from cancer diagnosis, time from cancer diagnosis to baseline questionnaire, the less likely survivors from 4 high-risk cancer groups subjective health status, pain or anxiety as a result of (bone tumor, central nervous system tumor, Hodgkin’s the cancer or its treatment, and concern for future disease, leukemia) were to report a cancer-related visit health. To assess follow-up patterns for survivors who (P <.001 for each group; Figure 2). Table 3 provides might be at higher risk for late effects, a high-risk treat- the fi nal multivariate models of factors associated with ment variable was created that consisted of those cases limited contact or care. Findings in addition to those of patients who received one or more of the following reported in Table 3 are described below. treatments: radiation to the mantle or chest, anthracy- Survivors who had received high-risk treatments cline with a cumulative dose ≥ 300 mg/m , bleomycin, were signifi cantly more likely to have each type visit ifosfamide, or etoposide. than other survivors (Table 4). As above, the likelihood of a general physical or a cancer-related visit decreased Analysis with age (P <.001 for both types of visits) or as the Univariate analyses were performed to assess the interval from cancer diagnosis increased (P <.001 for associations of demographic and cancer-related vari- both types of visits). ables with the medical care outcome measures. The Twenty-percent reported not having a general Cochran-Armitage trend test was used for assessing physical examination, a cancer-related visit, or a visit trends in binomial proportions with aging or increasing at a cancer center. A multivariate model estimated the time from cancer diagnosis. To determine the strength following odds ratios for lack of at least 1 of these 3 of association between the outcome variables and the types of medical visits: survivors 30 years or older in demographic and cancer-related factors hypothesized comparison with those less than 29 years of age (OR = to be signifi cant a priori, regression analysis was used 1.56; 95% CI, 1.35-1.81), male sex (OR = 1.65; 95% to estimate odds ratios (OR) with 95% confi dence CI, 1.44-1.88), survivors without health insurance (OR intervals (CI) for absence of each outcome. Specifi cally, = 2.34; 95% CI, 1.97-2.77), lack of concern for future generalized linear mixed models (logistic regression health (OR = 1.57; 95% CI, 1.36-1.82), and high-risk with institution-specifi c Gaussian random intercepts) treatment (OR = 0.64; 95% CI, 0.55-0.73). were used to account for possible clustering based on institution. Data were analyzed with the SAS version 8 DISCUSSION (SAS institute, Cary, NC) with 2-tailed statistical tests. This study is the fi rst to report general and cancer- related health care visits in young adult survivors of RESULTS childhood cancer in the United States and Canada. Of the 17,280 study subjects contacted, 14,054 (81%) Four primary fi ndings are discussed below: (1) most sur- responded by completing the baseline questionnaire. At vivors reported some contact with the medical system, the time of this analysis, 9,434 were alive and aged 18 (2) the likelihood of a general physical examination or ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 63 ADULT CHILDHOOD CANCER SURVIVORS a cancer-related medical visit decreased substantially as occurred at a stage in life when the incidence of many the survivor aged or the time interval from diagnosis late effects of cancer therapy, including most second increased, (3) less than 20% of survivors were seen in cancers, cardiovascular disease, osteoporosis, and endo- a cancer center, and (4) risk-based health care of adult crinopathies, are increasing. Encouragingly, those who survivors of childhood cancer is likely uncommon. needed follow-up the most, survivors treated with high- Almost 90% of adult survivors reported some con- risk therapies, were more likely than other survivors to tact with a health care clinician in the 2-year period, report a general physical examination, a cancer-related suggesting that access to general or nonspecifi c health visit, or a visit to a cancer center. Even in this high- care might not be an important issue for most young risk group, however, the likelihood of visits decreased adult survivors in this cohort. Factors typically associ- signifi cantly with age or increasing interval from the ated with lack of health care in the general popula- cancer diagnosis. Of note, ethnic or racial minority 30-33 tion, such as lack of medical insurance, ethnic status was not associated with absence of these types minority status, and male sex, were associated with of visits. In contrast, male and uninsured survivors were limited nonspecifi c medical contact. less likely to report such visits. About 75%, 50%, and 25% of survivors in their Although the content of these types of medical visits younger adult years, 18 to 24 years, reported a general was not assessed in this study, 2 examples of medical physical examination, a cancer-related visit, or a visit care may be illustrative. Treatment with an anthracy- to a cancer center, respectively. The proportion of cline, used in the therapy for several childhood cancers, survivors reporting these types of visits decreased sig- can lead to a late-onset cardiomyopathy, often occurring 34,35 nifi cantly with age and with increasing time from can- 10 to 20 years after the cancer therapy. The optimum cer diagnosis. This decrease in health care utilization and cost-effective methods to screen for left ventricular Table 1. Percentage of Adult Survivors of Childhood Cancer Who Reported the Following Types of Outpatient Medical Care in a 2-Year Period: Sociodemographic Factors General General Cancer- Cancer Medical Physical Related Center Contact Examination Medical Visit Medical Visit Factor Number (%) (%) (%) (%) Age at interview 18–19 y 1,126 88.4 82.7 48.6 31.0 20–24 y 2,752 87.7 73.1 45.1 24.2 25–29 y 2,528 85.8 67.6 38.7 21.5 30–34 y 1,849 86.8 65.0 39.9 17.5 35–48 y 1,179 86.8 67.0 37.8 16.6 Sex Male 5,020 82.0 65.3 39.6 22.3 Female 4,414 93.6 75.8 44.5 21.9 Race/ethnicity White, non-Hispanic 7,886 87.7 70.2 41.8 21.5 Black, non-Hispanic 392 79.1 72.9 34.8 20.0 Hispanic 434 83.2 71.2 47.3 32.2 Others 273 82.6 69.0 45.1 24.7 Education <HS graduate 959 82.8 68.1 44.4 26.2 HS/some college 5,239 85.6 69.2 40.2 21.3 College graduate 2,723 90.5 72.2 43.7 22.7 Health insurance Yes 7,835 88.7 73.0 43.5 22.4 No 1,439 78.1 55.2 32.8 19.7 Household income <$20,000 1,870 83.7 64.9 41.5 20.0 ≥$20,000 6,403 88.5 72.3 41.9 22.3 <HS graduate = some high school, did not graduate; HS/some college = high school graduate or high school graduate with some college courses. Note: Percentages are based upon the total with available data for each variable. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 64 ADULT CHILDHOOD CANCER SURVIVORS wall motion abnormalities are still being studied, but survivors who had been treated with ≥300 mg/m of an there is consensus that survivors who were treated with anthracycline reported a cancer-related medical visit. ≥300 mg/m of an anthracycline should be observed Care reported by Hodgkin’s disease survivors, 34,35 closely longitudinally. In this analysis, only 51.7% of the cancer group that faces perhaps the most serious Table 2. Percentage of Adult Survivors of Childhood Cancer Who Reported the Following Types of Outpatient Medical Care in a 2-Year Period: Cancer-Related Factors General General Cancer-Related Cancer Medical Physical Medical Center Contact Examination Visit Medical Visit Factor Number % % % % Age at diagnosis 0-4 y 2,426 86.0 72.4 36.4 18.2 5-9 y 2,336 86.2 71.6 41.1 23.3 10-14 y 2,540 87.2 68.4 43.5 23.6 15-21 y 2,132 88.6 69.0 46.9 23.2 Interval from cancer diagnosis 293 93.8 76.6 64.4 39.6 5-9 y 2,472 88.5 74.0 53.5 31.2 10-14 y 3,456 87.3 72.8 40.5 21.4 15-19 y 2,602 85.5 65.2 33.4 14.2 20-24 y 611 82.2 60.6 28.0 11.5 25-29 y Cancer diagnosis Leukemia 2,846 85.0 72.4 36.3 22.4 Central nervous system tumor 1,166 88.6 66.3 52.9 14.8 Hodgkin’s disease 1,631 90.6 76.0 52.6 29.9 Non-Hodgkin’s lymphoma 865 84.2 68.3 36.9 21.6 Wilms’ tumor 630 88.2 68.8 33.7 18.0 Neuroblastoma 399 86.4 68.9 28.0 13.8 Sarcoma 894 75.0 67.8 39.9 19.6 Bone 1,003 88.4 65.4 43.8 24.9 Subjective health status Excellent 1,954 82.3 72.7 34.8 22.0 Very good 3,553 87.9 72.8 40.1 22.0 Good 2,834 88.6 68.7 45.1 22.4 Fair 844 87.9 63.7 51.8 21.6 Poor 146 89.7 51.1 62.1 24.4 Future health concerns Very concerned 2,787 88.9 73.5 48.0 23.9 Somewhat concerned 1,901 89.5 71.7 44.5 24.8 Concerned 2,298 87.1 70.0 40.4 21.7 Not very concerned 1,413 85.6 67.3 35.5 19.5 Not concerned at all 810 78.3 62.1 31.0 15.1 Cancer pain None 7,092 86.3 71.3 38.8 21.0 Small 976 90.0 69.9 49.9 25.0 Medium 608 89.4 67.3 54.2 26.6 A lot 232 88.7 67.3 59.3 27.9 Very bad 77 86.8 52.1 63.4 30.3 Cancer anxiety None 5,230 83.8 69.5 35.9 19.8 Small 2,513 91.8 72.7 47.3 23.6 Medium 808 91.7 71.7 55.5 27.2 A lot 300 90.9 73.1 59.3 30.4 Very many 73 90.4 61.4 48.5 31.8 Note: Percentages are based upon the total with available data for each variable. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 65 ADULT CHILDHOOD CANCER SURVIVORS Figure 1. Percentage of adult survivors of childhood cancer with medical visits in a 2-year period by interval from cancer diagnosis to baseline questionnaire. General Medical Contact General Physical Examination Cancer-Related Medical Visit Cancer Center Medical Visit 7 9 11 13 15 17 19 21 23 26 Years Since Cancer Diagnosis to Baseline Question * Trend signifi cant with P <.001 for general physical education, cancer-related medical visit, and cancer center medical visit by Cochran-Armitage trend test. Figure 2. Percentage of adult survivors of 4 higher risk cancer groups with a cancer-related medical visit in a 2-year period by interval from cancer diagnosis to baseline questionnaire. Bone CNS-tumor Hodgkin's Leukemia 7 9 11 13 15 17 19 21 23 25 Years Since Cancer Diagnosis to Baseline Questionnaire Note: Trend signifi cant with P <.001 for bone tumor, central nervous system (CNS) tumor, Hodgkin’s disease, and leukemia survivors by Cochran-Armitage trend test. 35 41 42 risks of childhood cancer survivors, serves as a second dysfunction, infertility, and premature menopause. example. Depending on therapy, Hodgkin’s disease Though Hodgkin’s disease survivors in this study were survivors face a markedly increased risk for second more likely to report cancer-related care than other sur- 10-13,36,37 12 cancers, endocrine dysfunction, coronary vivors, nearly 50% reported no such care. As with the 38,39 40 artery disease, cardiac valvular disease, ventricular general survivor population, those in these 2 high-risk ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 Percent of Survivors with Medical Visits Percent of Survivors with Cancer-Related Visits ADULT CHILDHOOD CANCER SURVIVORS Table 3. Multivariate Risk Factors for Absence of the Following Types of Outpatient Medical Care in a 2-Year Period in Adult Survivors of Childhood Cancer Absence of General Medical General Physical Cancer-Related Cancer Center Contact Examination Medical Visit Medical Visit Variable OR 95% CI OR 95% CI OR 95% CI OR 95% CI Age at interview 18–19 y 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent 20–24 y 1.11 0.92–1.33 1.31 1.07–1.61 1.18 0.90–1.56 2.06 1.62–2.61 25–29 y 2.45–3.97 1.67 1.38–2.02 1.88 1.51–2.34 1.47 1.11–1.95 3.12 30–34 y 2.91–4.82 1.74 1.42–2.14 2.79 2.19–3.56 1.59 1.18–2.15 3.75 ≥35 y 2.78–4.76 2.29 1.83–2.87 3.43 2.61–4.51 1.71 1.23–2.37 3.64 Sex Female 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Male 2.54 2.15–2.99 1.53 1.36–1.71 1.18 1.06–1.30 1.15 1.01–1.30 Ethnicity White, non-Hispanic 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Minority 1.53 1.21–1.93 0.81 0.66–0.99 0.97 0.81–1.16 0.79 0.64–0.96 Education College graduate 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent HS/some college 1.48 1.22–1.79 1.21 1.06–1.38 1.16 1.03–1.31 1.25 1.08–1.44 <HS graduate 1.88 1.41–2.52 1.34 1.06–1.70 1.14 0.92–1.41 1.07 0.84–1.37 Health insurance Yes 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent No 2.14 1.78–2.57 2.19 1.87–2.56 1.64 1.40–1.92 1.41 1.16–1.70 Health status Good 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Fair/poor 0.94 0.72–1.22 1.42 1.18–1.71 0.62 0.52–0.74 1.01 0.82–1.24 Concern for future health 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Concerned 1.44 1.21–1.71 1.38 1.21–1.58 1.51 1.33–1.71 1.53 1.31–1.79 Not concerned High-risk treatment* No 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Yes 0.73 0.62–0.86 0.72 0.64–0.81 0.59 0.52–0.65 0.45 0.39–0.51 OR = odds ratio; CI = confi dence interval; <HS graduate = some high school, did not graduate; HS/some college = high school graduate or high school graduate with some college courses. * High-risk treatment = treatment with any of the following: chest or mantle radiation, anthracycline ≥300 mg/m , bleomycin, etoposide, or ifosfamide. groups were less likely to report either a general physi- 1980s, with the burgeoning information regarding late cal examination or a cancer-related visit as they aged or effects of therapy, long-term follow-up programs were as the time from diagnosis increased. established in many cancer centers with the intent of These fi ndings have important implications for providing survivors with screening, surveillance, and cancer centers and primary care physicians. Whereas education about late effects. Transition of medical care the incidence of many modifi able late effects increases for adolescent and young adult survivors from long- with age, the likelihood of survivors having general term follow-up programs to primary care physicians 24-26 physical examinations or cancer-related care appears has been recommended. By 1997, however, only to decrease, which implies that provision of risk-based 53% of childhood cancer centers in North America care also decreases with time. There are 4 key obstacles had developed a long-term follow-up program. Thus, contributing to this problem: many cancer centers do most young adult survivors have not been seen in such not provide survivors with adequate information about a program. Even though most survivors have a fair late effects, most survivors are unaware of their risks, knowledge of their general diagnosis and whether they primary care physicians are unfamiliar with the popula- received chemotherapy or radiation therapy, few have tion, and there is little formal communication between a summary of their treatment or are aware of their risks cancer centers and primary care physicians. In the for late effects of therapy. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 67 ADULT CHILDHOOD CANCER SURVIVORS Table 4. Percentage of Adult Survivors of Childhood Cancer Treated With Therapies Associated With Increased Risk for Late Effects Reporting an Absence of the Following Types of Outpatient Medical Care in a 2-Year Period, Compared With All Survivors Absence of General General Cancer- Cancer Medical Physical Related Center Contact Examination Medical Visit Medical Visit Total % OR (95% CI) % OR (95% CI) % OR (95% CI) % OR (95% CI) Variable No. Chest-mantle RT No 6,013 12.5 1.00 Referent 30.6 1.00 Referent 59.4 1.00 Referent 79.7 1.00 Referent Yes 1,802 8.2 0.68 0.57–0.83 24.6 0.64 0.56–0.73 47.9 0.60 0.53–0.67 70.3 0.50 0.43–0.57 Anthracycline <300 mg/m 6,459 11.1 1.00 Referent 29.4 1.00 Referent 53.6 1.00 Referent 72.6 1.00 Referent ≥300 mg/m 1,508 10.7 0.88 0.73–1.06z 27.4 0.96 0.84–1.11 51.7 0.77 0.68–0.88 69.8 0.65 0.56–0.75 Bleomycin No 7,642 12.2 1.00 Referent 29.4 1.00 Referent 58.4 1.00 Referent 81.5 1.00 Referent Yes 581 7.8 0.58 0.42–0.81 25.7 0.80 0.65–0.99 40.8 0.48 0.40–0.58 67.0 0.47 0.38–0.57 High-risk therapy* No 4,304 13.2 1.00 Referent 31.3 1.00 Referent 61.9 1.00 Referent 83.1 1.00 Referent Yes 3,449 10.0 0.70 0.60–0.82 26.4 0.74 0.66–0.83 50.7 0.58 0.53–0.65 71.1 0.45 0.39–0.50 Note: results adjusted for age, sex, and race; percentages are based upon the total with available data for each variable. OR = odds ratio; CI = confi dence intervals; RT = radiation therapy. * High-risk therapy: treatment with any of the following: chest-mantle radiation, anthracycline >300 mg/m , bleomycin, etoposide, or ifosfamide. Although primary care physicians provide general sicians, and foster ongoing communication between health care for most survivors, there has not been a survivors, cancer centers, and primary care physicians national effort to foster linkages between childhood need to be developed and tested. cancer centers and primary care physicians to enhance There are several limitations of this study that are risk-based care. There is a paucity of information important to consider when interpreting the fi ndings. about this population in primary care-based journals, First, health care utilization was based upon self- and there is no mention of this population in primary report by respondents and was not externally verifi ed. care textbooks, resident curricula, or continuing medi- Second, the determination of cancer-related medical cal education monographs. Finally, compounding visits was based upon the survivor’s perception of the this lack of dissemination of information, survivors reasons for the medical visit. There are times when a represent a small percentage of a typical primary care health care professional might have seen a survivor and physician’s practice. In addition, providing appropri- screened for late effects of therapy without the survivor ate risk-based care to survivors, who are a heteroge- understanding the rationale for testing. Similarly, the neous group, is complicated by the variety of cancers content of the visit as it pertained to appropriate risk diagnosed at different ages and treatment eras and by assessment and screening based upon previous therapy recommendations for screening and surveillance that and modifying factors, such as unhealthy behaviors are constantly evolving. As a result, there is a critical or genetic predisposition for different diseases, was need for cancer centers, primary care physicians, and not determined from whether a survivor had a general survivors to communicate and share information. physical examination or a cancer-related visit. Third, Readers are directed to http://www.cancer.umn.edu/ though nationally 25% of new childhood cancers are in ltfu for general information regarding risks of this patients of ethnic minorities, only 12.2% of this sur- population (see project newsletters). It is important that vivor cohort belonged to an ethnic minority. Because recommendations for risk-based care, based on current the collaborating institutions did not regularly collect evidence, be disseminated in primary care journals and race and ethnicity information on all patients treated textbooks. As an example, Oeffi nger et al provided between 1970 and 1986, it cannot be determined recommendations for primary care physicians caring whether this low percentage of ethnic minorities rep- for leukemia survivors. To optimize risk-based care of resents a selection bias, a limitation in generalizability, this vulnerable population, interventions to educate or a lower proportion of minority survivors treated at survivors, enhance their transition to primary care phy- these institutions. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 68 ADULT CHILDHOOD CANCER SURVIVORS Despite these limitations, our fi ndings likely over- National Medical Center, Washington, DC; A. Kim Ritchey, MD, Children’s Hospital of Pittsburgh, Pa; Leslie L. Robison, PhD, University of Minne- estimate the percentage of long-term survivors who sota, Minneapolis, Minn; Kathy Ruccione, RN, MPH, Children’s Hospital are receiving risk-based health care. Completion of the Los Angeles, Calif; Charles Sklar, MD, Memorial Sloan-Kettering Cancer lengthy questionnaire required a degree of sophistica- Center, New York, NY; W. Anthony Smithson, MD, Mayo Clinic, Rochester, tion and interest on the part of the responding survi- Minn; Louise Strong, MD, U.T.MD Anderson Cancer Center, Houston, Tex; vors, and it is probable that the nonrespondents are Terry A. Vik, MD, Riley Hospital for Children, Indianapolis, Ind; Yutaka Yasui, PhD, Fred Hutchinson Cancer Center, Seattle, Wa; Lonnie Zeltzer, even less likely to have adequate risk-based health care. MD, University of California-Los Angeles, Calif. In conclusion, though most adult survivors of child- hood cancer in this large cohort study reported some Former Institutional Principal Investigators: Holcombe Grier, MD, type of contact with the medical system, the likeli- Dana-Farber Cancer Institute, Boston, Mass; Thomas Pendergrass, MD, hood of a cancer-related visit or a physical examination Children’s Hospital and Medical Center, Seattle, Wa; Teresa Vietti, MD, St. Louis Children’s Hospital, Mo; Lorrie Odom, MD, Children’s Hospital, decreased at an age when the incidence of modifi able Denver, Colo; Frederick Ruymann, MD, Columbus Children’s Hospital, late effects are increasing. Primary care physicians Ohio; Julie Blatt, MD, Children’s Hospital of Pittsburgh, Pa; Gerald Gil- provide health care for most of this growing high-risk christ, MD, Mayo Clinic, Rochester, Minn; Robert Weetman, MD, Riley population. To optimize risk-based care, it is critical Hospital for Children, Indianapolis, Ind; John Potter, MD, PhD, Fred that cancer centers and primary care physicians develop Hutchinson Cancer Center, Seattle, Wa. methods to communicate effectively and longitudinally. Member CCSS Steering Committee: John Boice, ScD, International To read commentaries or to post a response to this article, see it Epidemiology Institute, Rockville, MD; Norman Breslow, PhD, University online at http://www.annfammed.org/cgi/content/full/2/1/61. of Washington, Seattle, Wa; Kevin Oeffi nger, MD, UT-Southwestern Medi- cal Center at Dallas, Tex; Frederick Li, MD, Dana-Farber Cancer Institute, Key words: Survivors; neoplasms; delivery of health care; cohort Boston, Mass; Daniel M. Green, MD, Roswell Park Cancer Institute, Buf- falo, NY; Melissa Hudson, MD, St. Jude Children’s Research Hospital, Submitted December 13, 2002; submitted, revised, January 31, 2003; Memphis, Tenn; Anna Meadows, MD, Bobbie Bayton, Children’s Hospital accepted February 18, 2003. of Philadelphia, Pa; John Mulvihill, MD, Children’s Hospital, Oklahoma City, Okla; Stephen Qualman, MD, Columbus Children’s Hospital, Ohio; Versions of this paper were presented at the North American Primary Care Roger Packer, MD, Children’s National Medical Center, Washington, DC; Research Group 30th Annual Conference, New Orleans, La, November 18, Leslie L. Robison, PhD, Ann Mertens, PhD, Joseph Neglia, MD, MPH, 2002; and at the Seventh International Conference on Long-Term Compli- Mark Nesbit, MD, Stella Davies, MD, PhD, University of Minnesota, cations of Treatment of Children and Adolescents for Cancer, Niagara-on- Minneapolis, Minn; Charles Sklar, MD, Memorial Sloan-Kettering Cancer the-Lake, Ontario, Canada, June 29, 2002. Center, New York, NY; Malcolm Smith, MD, Martha Linet, MD, National Cancer Institute, Bethesda, Md; Louise Strong, MD, Marilyn Stovall, PhD, Funding support: This work was supported by Grant 5U01-CA-55727-05 U.T.MD Anderson Cancer Center, Houston, Tex; John Potter, MD, PhD, from the Department of Health and Human Services and funding to the Fred Hutchinson Cancer Center, Seattle, Wa; Lonnie Zeltzer, MD, Univer- University of Minnesota from the Children’s Cancer Research Fund. Dr. sity of California-Los Angeles, Calif. Oeffi nger received partial support for this work through the Robert Wood Johnson Foundation Generalist Physician Faculty Scholars Program and the American Academy of Family Physicians Advanced Research Training References Program. 1. Ries LAG, Smith MA, Gurney JG, et al, eds. Cancer Incidence and Survival Among Children and Adolescents: United States SEER Program Acknowledgments: The authors would like to thank Pauline Mitby, 1975-1995. Bethesda, Md: National Cancer Institute; 1999. Pub. No. MPH, for her assistance with the CCSS data base and Sandra Mulkey, RD, 99-4649. for her assistance with manuscript preparation. 2. Meadows AT, Krejmas NL, Belasco JB. The medical cost of cure: sequelae in survivors of childhood cancer. In: van Eys J, Sullivan MP, Childhood Cancer Survivor Study Institutions eds. Status of the Curability of Childhood Cancers. New York, NY: Raven Press; 1980. and Investigators 3. Mertens AC, Yasui Y, Neglia JP, et al. 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Long-term sur- endag PC. Ischemic heart disease after mantlefi eld irradiation for Hodg- vivors of childhood cancer have an increased risk of manifesting the kin’s disease in long-term follow-up. Radiother Oncol. 1999;51:35-42. metabolic syndrome. J Clin Endocrinol Metab. 1996;81:3051-3055. 39. Eriksson F, Gagliardi G, Liedberg A, et al. Long-term cardiac mortal- 19. Oeffi nger KC, Buchanan GR, Eshelman DA, et al. Cardiovascu- ity following radiation therapy for Hodgkin’s disease: analysis with lar risk factors in young adult survivors of childhood acute lympho- the relative seriality model. Radiother Oncol. 2000;55:153-162. blastic leukemia. Am J Pediatr Hematol Oncol. 2001;23:424-430. 40. Veinot JP, Edwards WD. Pathology of radiation-induced heart disease: a 20. Oeffi nger KC, Mertens AC, Sklar CA, et al. Obesity in adult survivors surgical and autopsy study of 27 cases. Hum Pathol. 1996;27:766-773. of childhood acute lymphoblastic leukemia: a report from the Child- 41. Sy Ortin TT, Shostak CA, Donaldson SS. Gonadal status and repro- hood Cancer Survivor Study. J Clin Oncol. 2003;21:1359-1365. ductive function following treatment for Hodgkin’s disease in child- 21. Strickland DK, Riely CA, Patrick CC, et al. Hepatitis C infection hood: the Stanford experience. Int J Radiat Oncol Biol Phys. 1990;19: among survivors of childhood cancer. Blood. 2000;95:3065-3070. 873-880. 22. Brennan BM, Rahim A, Mackie EM, Eden OB, Shalet SM. Growth 42. Byrne J. Infertility and premature menopause in childhood cancer hormone status in adults treated for acute lymphoblastic leukaemia survivors. Med Pediatr Oncol. 1999;33:24-28. in childhood. Clin Endocrinol (Oxf). 1998;48:777-783. 43. Oeffi nger KC, Eshelman DA, Tomlinson GE, Buchanan GR. Programs for 23. Sklar C, Whitton J, Mertens A, et al. Abnormalities of the thyroid in adult survivors of childhood cancer. J Clin Oncol. 1998;16:2864-2867. survivors of Hodgkin’s disease: data from the Childhood Cancer Sur- 44. Kadan-Lottick NS, Robison LL, Gurney JG, et al. Childhood cancer vivor Study. J Clin Endocrinol Metab. 2000;85:3227-3232. survivors’ knowledge about their past diagnosis and treatment: Child- 24. Bleyer WA, Smith RA, Green DM, et al. Workgroup #1: Long-term hood Cancer Survivor Study. JAMA. 2002;287:1832-1839. care and lifetime follow-up. Cancer. 1993; 71:2413. 45. Oeffi nger KC. Childhood cancer survivors and primary care physi- 25. Meadows AT, Black B, Nesbit ME Jr, et al. Long-term survival: clini- cians. J Fam Pract. 2000;49:689-690. cal care, research, and education. Cancer. 1993;71:3213-3215. 46. Oeffi nger KC, Eshelman DA, Tomlinson GE, Tolle M, Schneider GW. 26. Neglia JP, Nesbit ME Jr. Care and treatment of long-term survivors Providing primary care for long-term survivors of childhood acute of childhood cancer. Cancer. 1993;71:3386-3391. lymphoblastic leukemia. J Fam Pract. 2000;49:1133-1146. 27. National Cancer Policy Board. The cancer system. In: Hewitt M, Sim- 47. Grovas A, Fremgen A, Rauck A, et al. The National Cancer Data Base one JV, eds. Ensuring Quality Cancer Care. Washington, DC: National Report on patterns of childhood cancers in the United States. Cancer. Academy Press, 1999. 1997;80:2321-2332. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Annals of Family Medicine Unpaywall

Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study

The Annals of Family MedicineJan 1, 2004

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Abstract

Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study Kevin C. Oeffi nger, MD ABSTRACT Ann C. Mertens, PhD BACKGROUND We wanted to determine the type of outpatient medical care Melissa M. Hudson, MD reported by young adult survivors of childhood cancer and to examine factors associated with limited medical care. James G. Gurney, PhD Jacqueline Casillas, MD METHODS We analyzed data from 9,434 adult childhood cancer survivors Hegang Chen, PhD enrolled in a retrospective cohort study who completed a baseline questionnaire. They had a mean age of 26.8 years (range 18 to 48 years), 47% were female, John Whitton, MS 12% were minorities, and 16% were uninsured. Four self-reported outcome mea- Mark Yeazel, MD, MPH sures were used to determine outpatient medical care in a 2-year period: general Yutaka Yasui, PhD contact with the health care system, general physical examination, cancer-related Leslie L. Robison, PhD medical visit, and medical visit at a cancer center. Department of Family Practice and Com- RESULTS Eighty-seven percent reported general medical contact, 71.4% a general munity Medicine, University of Texas South- physical examination, 41.9% a cancer-related visit, and 19.2%, a visit at a cancer western Medical Center, Dallas, Tex center. Factors associated with not reporting a general physical examination, a Department of Pediatrics, School of Medicine, University of Minnesota, cancer-related visit, or a cancer center visit included no health insurance (odds Minneapolis, Minn ratio [OR] = 2.34; 95% confi dence interval [CI], 1.97-2.77), male sex (OR = Departments of Hematology–Oncology 1.65; 95% CI, 1.44-1.88), lack of concern for future health (OR = 1.57; 95% CI, and Behavioral Medicine, St. Jude Children’s 1.36-1.82), and age 30 years or older in comparison with those 18 to 29 years Research Hospital, Memphis, Tenn (OR = 1.56; 95% CI, 1.35-1.81). The likelihood of reporting a cancer-related Department of Pediatrics, School of Medi- visit or a general physical examination decreased signifi cantly as the survivor aged cine, University of California, Los Angeles, or the time from cancer diagnosis increased. This trend was also signifi cant for Calif 5 those treated with therapies associated with substantial risk for cardiovascular dis- Division of Biostatistics, School of ease or breast cancer. Public Health, University of Minnesota, Minneapolis, Minn CONCLUSIONS Primary care physicians provide health care for most of this grow- Cancer Prevention Research Program, Fred ing high-risk population. To optimize risk-based care, it is critical that cancer cen- Hutchinson Cancer Research Center, Seattle, ters and primary care physicians develop methods to communicate effectively and Wash longitudinally. Department of Family Practice and Community Health, School of Medicine, Ann Fam Med 2004;2:61-70. DOI: 10.1370/afm.26. University of Minnesota, Minneapolis, Minn INTRODUCTION ith improvements in treatment during the recent decades, sur- vival rates for childhood cancer have increased to more than Confl icts of interest: none reported W70%, resulting in an increasing population of long-term sur- 1 2 vivors. Currently, 1 in 900 young adults is a childhood cancer survivor. With this growth in survivorship, there has been a developing recognition CORRESPONDING AUTHOR of the potential long-term health problems related to cancer therapy. All Kevin C. Oeffi nger, MD Department of Family Practice and organ systems can be affected by radiation, chemotherapy, or surgery, lead- Community Medicine ing to a wide array of potential late effects. University of Texas Southwestern Medical Long-term survivors of childhood cancer face considerable risk for Center at Dallas late mortality, morbidity, and adverse health status secondary to their 6263 Harry Hines Blvd previous cancer therapy. In a retrospective analysis of 20,227 childhood Dallas, TX 75390-9067 kevin.oeffi nger@utsouthwestern.edu cancer patients who had survived 5 years, Mertens et al reported an ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 61 ADULT CHILDHOOD CANCER SURVIVORS absolute excess risk for mortality from second cancers METHODS (not including late recurrences), cardiac causes, and pulmonary causes of 1.26, 0.27, and 0.015 deaths, Subjects respectively, per 1,000 person-years. Morbidity sec- The Childhood Cancer Survivor Study (CCSS) is a ondary to late effects of chemotherapy or radiation is multi-institutional study of patients who survived for frequent and often serious. In 5 studies reporting on 5 or more years after diagnosis of a cancer. Eligibility long-term survivors with a median age ranging from 15 criteria for the cohort included (1) confi rmed diagnosis to 23 years, 58% to 69% had at least one late effect of of 1 of the 8 primary cancer groups (leukemia, central therapy, with 25% to 30% experiencing a moderate to nervous system malignancies, Hodgkin’s disease, non- 4-8 9 severe late complication. Hudson et al found that Hodgkin’s lymphoma, kidney tumor, neuroblastoma, 44% of adult survivors of childhood cancer reported soft tissue sarcoma, or bone tumor); (2) diagnosis and at least one domain of their health status to be moder- initial treatment at 1 of the 25 collaborating institu- ately to extremely adversely affected. tions; (3) diagnosis between January 1, 1970, and Survivors can benefi t from early diagnosis and inter- December 31, 1986; (4) age less than 21 years at diag- vention or preventive care targeted at reducing risk nosis; and (5) survived at least 5 years from diagnosis. for late effects, such as second malignant neoplasms of The total eligible sample fulfi lling these criteria was 10,11 12,13 14,15 the breast, thyroid, and skin after radiation 20,276. Relying upon the last known address provided 16,17 therapy; altered bone metabolism and osteoporosis ; by the treating institution, a total of 7,913 (39%) obesity-related health problems (dyslipidemia, hyper- required tracing to locate the eligible survivor or his 18-20 tension, diabetes mellitus, cardiovascular disease) ; or her parents. Of those survivors who required trac- liver failure secondary to chronic hepatitis C after ing, 4,917 (62%) were located; 2,996 (38%) were not blood transfusion ; and endocrine dysfunction after despite intensive tracing efforts and were subsequently 22,23 chest-mantle radiation. Longitudinal care addressing classifi ed as lost to follow-up. The result was a total other late effects, such as infertility, musculoskeletal sample of 17,280 eligible survivors who were contacted problems, cognitive dysfunction, and psychosocial regarding study participation. issues, may also improve survivors’ health outcomes and The CCSS protocol and contact documents were quality of life. reviewed and approved by the Human Subjects Com- Most late effects increase in incidence with age, mittee at each participating institution. Baseline data often becoming clinically apparent decades after ther- were collected by mail or telephone for members of apy. Because this window of time offers the potential the study cohort using a 24-page questionnaire that to modify severity of health outcomes by prevention or was designed to capture a wide range of information, early intervention, there is consensus that survivors of including sociodemographic characteristics, health hab- childhood cancer should have longitudinal risk-based its, chronic medical conditions, and access and utiliza- 4-8,24-26 health care. In a recent report, Ensuring Quality tion of medical care. Information on the characteristics Cancer Care, the National Cancer Policy Board, estab- of the original cancer diagnosis was obtained from the lished through the Institute of Medicine, recommended treating institution. For all CCSS respondents who lifelong follow-up of all cancer survivors as a key com- returned a signed medical release, information concern- ponent to improving the quality of cancer care. Expert ing primary cancer therapy and initial treatment was opinion, based on limited evidence, recommends that collected. Copies of the baseline questionnaire and the risk-based health care include a systematic plan for treatment abstraction form used in data collection are screening, surveillance, and prevention, incorporating a available for review and can be downloaded at http:// survivor’s risks based on the previous cancer or cancer www.cancer.umn.edu/ccss. Further details regarding the therapy, genetic predispositions, lifestyle behaviors, methodology and cohort characteristics were published 24-26,28 29 and comorbid health conditions. previously. To date, the health care utilization patterns of young adult survivors have not been reported. It is Outcome Measures unknown what percentage seek or receive medical care Four dichotomous outcome measures were used to related to their previous cancer, and whether this care describe different types of outpatient medical care is risk based. The purpose of this exploratory study was reported by survivors in a 2-year period: (1) general to use a large cohort of young adult survivors to (1) or nonspecifi c contact with a health care provider, (2) determine the type of outpatient medical visits that general physical examination, (3) cancer-related medi- survivors report in a 2-year period, and (2) examine cal visit, and (4) medical visit at a cancer center. These factors associated with limited follow-up or medical outcomes were not mutually exclusive. To ascertain visits. general or nonspecifi c medical contact, respondents ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 62 ADULT CHILDHOOD CANCER SURVIVORS were asked whether they had contact with a physician, years or older at interview. The demographics and can- nurse, or other health care provider. Such contact could cer treatment of the 9,434 adult survivors are provided include a visit to a physician’s offi ce or a telephone call. in Tables 1 and 2. The mean age at time of baseline To ascertain cancer-related medical visits and cancer questionnaire was 26.8 years (range 18 to 48 years), center visits, respondents were asked how many of the and the mean interval from diagnosis to completion of visits to a physician’s offi ce were related to their previ- questionnaire was 17.4 years (range 6.4 to 29.4 years). ous cancer and whether any of the visits were at an T Tables 1 and 2 show the percentage of respon- ables 1 oncology (cancer) center. The content or additional dents who reported the 4 types of medical visits by details about the medical visits were not ascertained, each of the demographic and cancer-related variables. and it is possible that they incorporated screening The older the survivor, the less likely he or she was related to the previous cancer treatment. to report a general physical examination (P <.001), a cancer-related visit (P <.001), or a visit to a cancer Independent Variables center (P <.001). Similarly, as the interval from cancer Sociodemographic variables included age at time of diagnosis increased, the survivors were less likely to interview, sex, race and ethnicity, education, health report these types of visits (P <.001 for each outcome; insurance, and household income. Because the number Figure 1). For survivors who reported a general physi- of black, non-Hispanic and Hispanic survivors was cal examination, the likelihood of also reporting a small, they were combined with other race and ethnic cancer-related visit decreased with age (P <.001) or minorities and analyzed as a single group. Cancer- with an increasing interval from cancer diagnosis (P related variables included cancer type, age at diagnosis, <.001). The longer the interval from cancer diagnosis, time from cancer diagnosis to baseline questionnaire, the less likely survivors from 4 high-risk cancer groups subjective health status, pain or anxiety as a result of (bone tumor, central nervous system tumor, Hodgkin’s the cancer or its treatment, and concern for future disease, leukemia) were to report a cancer-related visit health. To assess follow-up patterns for survivors who (P <.001 for each group; Figure 2). Table 3 provides might be at higher risk for late effects, a high-risk treat- the fi nal multivariate models of factors associated with ment variable was created that consisted of those cases limited contact or care. Findings in addition to those of patients who received one or more of the following reported in Table 3 are described below. treatments: radiation to the mantle or chest, anthracy- Survivors who had received high-risk treatments cline with a cumulative dose ≥ 300 mg/m , bleomycin, were signifi cantly more likely to have each type visit ifosfamide, or etoposide. than other survivors (Table 4). As above, the likelihood of a general physical or a cancer-related visit decreased Analysis with age (P <.001 for both types of visits) or as the Univariate analyses were performed to assess the interval from cancer diagnosis increased (P <.001 for associations of demographic and cancer-related vari- both types of visits). ables with the medical care outcome measures. The Twenty-percent reported not having a general Cochran-Armitage trend test was used for assessing physical examination, a cancer-related visit, or a visit trends in binomial proportions with aging or increasing at a cancer center. A multivariate model estimated the time from cancer diagnosis. To determine the strength following odds ratios for lack of at least 1 of these 3 of association between the outcome variables and the types of medical visits: survivors 30 years or older in demographic and cancer-related factors hypothesized comparison with those less than 29 years of age (OR = to be signifi cant a priori, regression analysis was used 1.56; 95% CI, 1.35-1.81), male sex (OR = 1.65; 95% to estimate odds ratios (OR) with 95% confi dence CI, 1.44-1.88), survivors without health insurance (OR intervals (CI) for absence of each outcome. Specifi cally, = 2.34; 95% CI, 1.97-2.77), lack of concern for future generalized linear mixed models (logistic regression health (OR = 1.57; 95% CI, 1.36-1.82), and high-risk with institution-specifi c Gaussian random intercepts) treatment (OR = 0.64; 95% CI, 0.55-0.73). were used to account for possible clustering based on institution. Data were analyzed with the SAS version 8 DISCUSSION (SAS institute, Cary, NC) with 2-tailed statistical tests. This study is the fi rst to report general and cancer- related health care visits in young adult survivors of RESULTS childhood cancer in the United States and Canada. Of the 17,280 study subjects contacted, 14,054 (81%) Four primary fi ndings are discussed below: (1) most sur- responded by completing the baseline questionnaire. At vivors reported some contact with the medical system, the time of this analysis, 9,434 were alive and aged 18 (2) the likelihood of a general physical examination or ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 63 ADULT CHILDHOOD CANCER SURVIVORS a cancer-related medical visit decreased substantially as occurred at a stage in life when the incidence of many the survivor aged or the time interval from diagnosis late effects of cancer therapy, including most second increased, (3) less than 20% of survivors were seen in cancers, cardiovascular disease, osteoporosis, and endo- a cancer center, and (4) risk-based health care of adult crinopathies, are increasing. Encouragingly, those who survivors of childhood cancer is likely uncommon. needed follow-up the most, survivors treated with high- Almost 90% of adult survivors reported some con- risk therapies, were more likely than other survivors to tact with a health care clinician in the 2-year period, report a general physical examination, a cancer-related suggesting that access to general or nonspecifi c health visit, or a visit to a cancer center. Even in this high- care might not be an important issue for most young risk group, however, the likelihood of visits decreased adult survivors in this cohort. Factors typically associ- signifi cantly with age or increasing interval from the ated with lack of health care in the general popula- cancer diagnosis. Of note, ethnic or racial minority 30-33 tion, such as lack of medical insurance, ethnic status was not associated with absence of these types minority status, and male sex, were associated with of visits. In contrast, male and uninsured survivors were limited nonspecifi c medical contact. less likely to report such visits. About 75%, 50%, and 25% of survivors in their Although the content of these types of medical visits younger adult years, 18 to 24 years, reported a general was not assessed in this study, 2 examples of medical physical examination, a cancer-related visit, or a visit care may be illustrative. Treatment with an anthracy- to a cancer center, respectively. The proportion of cline, used in the therapy for several childhood cancers, survivors reporting these types of visits decreased sig- can lead to a late-onset cardiomyopathy, often occurring 34,35 nifi cantly with age and with increasing time from can- 10 to 20 years after the cancer therapy. The optimum cer diagnosis. This decrease in health care utilization and cost-effective methods to screen for left ventricular Table 1. Percentage of Adult Survivors of Childhood Cancer Who Reported the Following Types of Outpatient Medical Care in a 2-Year Period: Sociodemographic Factors General General Cancer- Cancer Medical Physical Related Center Contact Examination Medical Visit Medical Visit Factor Number (%) (%) (%) (%) Age at interview 18–19 y 1,126 88.4 82.7 48.6 31.0 20–24 y 2,752 87.7 73.1 45.1 24.2 25–29 y 2,528 85.8 67.6 38.7 21.5 30–34 y 1,849 86.8 65.0 39.9 17.5 35–48 y 1,179 86.8 67.0 37.8 16.6 Sex Male 5,020 82.0 65.3 39.6 22.3 Female 4,414 93.6 75.8 44.5 21.9 Race/ethnicity White, non-Hispanic 7,886 87.7 70.2 41.8 21.5 Black, non-Hispanic 392 79.1 72.9 34.8 20.0 Hispanic 434 83.2 71.2 47.3 32.2 Others 273 82.6 69.0 45.1 24.7 Education <HS graduate 959 82.8 68.1 44.4 26.2 HS/some college 5,239 85.6 69.2 40.2 21.3 College graduate 2,723 90.5 72.2 43.7 22.7 Health insurance Yes 7,835 88.7 73.0 43.5 22.4 No 1,439 78.1 55.2 32.8 19.7 Household income <$20,000 1,870 83.7 64.9 41.5 20.0 ≥$20,000 6,403 88.5 72.3 41.9 22.3 <HS graduate = some high school, did not graduate; HS/some college = high school graduate or high school graduate with some college courses. Note: Percentages are based upon the total with available data for each variable. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 64 ADULT CHILDHOOD CANCER SURVIVORS wall motion abnormalities are still being studied, but survivors who had been treated with ≥300 mg/m of an there is consensus that survivors who were treated with anthracycline reported a cancer-related medical visit. ≥300 mg/m of an anthracycline should be observed Care reported by Hodgkin’s disease survivors, 34,35 closely longitudinally. In this analysis, only 51.7% of the cancer group that faces perhaps the most serious Table 2. Percentage of Adult Survivors of Childhood Cancer Who Reported the Following Types of Outpatient Medical Care in a 2-Year Period: Cancer-Related Factors General General Cancer-Related Cancer Medical Physical Medical Center Contact Examination Visit Medical Visit Factor Number % % % % Age at diagnosis 0-4 y 2,426 86.0 72.4 36.4 18.2 5-9 y 2,336 86.2 71.6 41.1 23.3 10-14 y 2,540 87.2 68.4 43.5 23.6 15-21 y 2,132 88.6 69.0 46.9 23.2 Interval from cancer diagnosis 293 93.8 76.6 64.4 39.6 5-9 y 2,472 88.5 74.0 53.5 31.2 10-14 y 3,456 87.3 72.8 40.5 21.4 15-19 y 2,602 85.5 65.2 33.4 14.2 20-24 y 611 82.2 60.6 28.0 11.5 25-29 y Cancer diagnosis Leukemia 2,846 85.0 72.4 36.3 22.4 Central nervous system tumor 1,166 88.6 66.3 52.9 14.8 Hodgkin’s disease 1,631 90.6 76.0 52.6 29.9 Non-Hodgkin’s lymphoma 865 84.2 68.3 36.9 21.6 Wilms’ tumor 630 88.2 68.8 33.7 18.0 Neuroblastoma 399 86.4 68.9 28.0 13.8 Sarcoma 894 75.0 67.8 39.9 19.6 Bone 1,003 88.4 65.4 43.8 24.9 Subjective health status Excellent 1,954 82.3 72.7 34.8 22.0 Very good 3,553 87.9 72.8 40.1 22.0 Good 2,834 88.6 68.7 45.1 22.4 Fair 844 87.9 63.7 51.8 21.6 Poor 146 89.7 51.1 62.1 24.4 Future health concerns Very concerned 2,787 88.9 73.5 48.0 23.9 Somewhat concerned 1,901 89.5 71.7 44.5 24.8 Concerned 2,298 87.1 70.0 40.4 21.7 Not very concerned 1,413 85.6 67.3 35.5 19.5 Not concerned at all 810 78.3 62.1 31.0 15.1 Cancer pain None 7,092 86.3 71.3 38.8 21.0 Small 976 90.0 69.9 49.9 25.0 Medium 608 89.4 67.3 54.2 26.6 A lot 232 88.7 67.3 59.3 27.9 Very bad 77 86.8 52.1 63.4 30.3 Cancer anxiety None 5,230 83.8 69.5 35.9 19.8 Small 2,513 91.8 72.7 47.3 23.6 Medium 808 91.7 71.7 55.5 27.2 A lot 300 90.9 73.1 59.3 30.4 Very many 73 90.4 61.4 48.5 31.8 Note: Percentages are based upon the total with available data for each variable. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 65 ADULT CHILDHOOD CANCER SURVIVORS Figure 1. Percentage of adult survivors of childhood cancer with medical visits in a 2-year period by interval from cancer diagnosis to baseline questionnaire. General Medical Contact General Physical Examination Cancer-Related Medical Visit Cancer Center Medical Visit 7 9 11 13 15 17 19 21 23 26 Years Since Cancer Diagnosis to Baseline Question * Trend signifi cant with P <.001 for general physical education, cancer-related medical visit, and cancer center medical visit by Cochran-Armitage trend test. Figure 2. Percentage of adult survivors of 4 higher risk cancer groups with a cancer-related medical visit in a 2-year period by interval from cancer diagnosis to baseline questionnaire. Bone CNS-tumor Hodgkin's Leukemia 7 9 11 13 15 17 19 21 23 25 Years Since Cancer Diagnosis to Baseline Questionnaire Note: Trend signifi cant with P <.001 for bone tumor, central nervous system (CNS) tumor, Hodgkin’s disease, and leukemia survivors by Cochran-Armitage trend test. 35 41 42 risks of childhood cancer survivors, serves as a second dysfunction, infertility, and premature menopause. example. Depending on therapy, Hodgkin’s disease Though Hodgkin’s disease survivors in this study were survivors face a markedly increased risk for second more likely to report cancer-related care than other sur- 10-13,36,37 12 cancers, endocrine dysfunction, coronary vivors, nearly 50% reported no such care. As with the 38,39 40 artery disease, cardiac valvular disease, ventricular general survivor population, those in these 2 high-risk ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 Percent of Survivors with Medical Visits Percent of Survivors with Cancer-Related Visits ADULT CHILDHOOD CANCER SURVIVORS Table 3. Multivariate Risk Factors for Absence of the Following Types of Outpatient Medical Care in a 2-Year Period in Adult Survivors of Childhood Cancer Absence of General Medical General Physical Cancer-Related Cancer Center Contact Examination Medical Visit Medical Visit Variable OR 95% CI OR 95% CI OR 95% CI OR 95% CI Age at interview 18–19 y 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent 20–24 y 1.11 0.92–1.33 1.31 1.07–1.61 1.18 0.90–1.56 2.06 1.62–2.61 25–29 y 2.45–3.97 1.67 1.38–2.02 1.88 1.51–2.34 1.47 1.11–1.95 3.12 30–34 y 2.91–4.82 1.74 1.42–2.14 2.79 2.19–3.56 1.59 1.18–2.15 3.75 ≥35 y 2.78–4.76 2.29 1.83–2.87 3.43 2.61–4.51 1.71 1.23–2.37 3.64 Sex Female 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Male 2.54 2.15–2.99 1.53 1.36–1.71 1.18 1.06–1.30 1.15 1.01–1.30 Ethnicity White, non-Hispanic 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Minority 1.53 1.21–1.93 0.81 0.66–0.99 0.97 0.81–1.16 0.79 0.64–0.96 Education College graduate 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent HS/some college 1.48 1.22–1.79 1.21 1.06–1.38 1.16 1.03–1.31 1.25 1.08–1.44 <HS graduate 1.88 1.41–2.52 1.34 1.06–1.70 1.14 0.92–1.41 1.07 0.84–1.37 Health insurance Yes 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent No 2.14 1.78–2.57 2.19 1.87–2.56 1.64 1.40–1.92 1.41 1.16–1.70 Health status Good 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Fair/poor 0.94 0.72–1.22 1.42 1.18–1.71 0.62 0.52–0.74 1.01 0.82–1.24 Concern for future health 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Concerned 1.44 1.21–1.71 1.38 1.21–1.58 1.51 1.33–1.71 1.53 1.31–1.79 Not concerned High-risk treatment* No 1.00 Referent 1.00 Referent 1.00 Referent 1.00 Referent Yes 0.73 0.62–0.86 0.72 0.64–0.81 0.59 0.52–0.65 0.45 0.39–0.51 OR = odds ratio; CI = confi dence interval; <HS graduate = some high school, did not graduate; HS/some college = high school graduate or high school graduate with some college courses. * High-risk treatment = treatment with any of the following: chest or mantle radiation, anthracycline ≥300 mg/m , bleomycin, etoposide, or ifosfamide. groups were less likely to report either a general physi- 1980s, with the burgeoning information regarding late cal examination or a cancer-related visit as they aged or effects of therapy, long-term follow-up programs were as the time from diagnosis increased. established in many cancer centers with the intent of These fi ndings have important implications for providing survivors with screening, surveillance, and cancer centers and primary care physicians. Whereas education about late effects. Transition of medical care the incidence of many modifi able late effects increases for adolescent and young adult survivors from long- with age, the likelihood of survivors having general term follow-up programs to primary care physicians 24-26 physical examinations or cancer-related care appears has been recommended. By 1997, however, only to decrease, which implies that provision of risk-based 53% of childhood cancer centers in North America care also decreases with time. There are 4 key obstacles had developed a long-term follow-up program. Thus, contributing to this problem: many cancer centers do most young adult survivors have not been seen in such not provide survivors with adequate information about a program. Even though most survivors have a fair late effects, most survivors are unaware of their risks, knowledge of their general diagnosis and whether they primary care physicians are unfamiliar with the popula- received chemotherapy or radiation therapy, few have tion, and there is little formal communication between a summary of their treatment or are aware of their risks cancer centers and primary care physicians. In the for late effects of therapy. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 67 ADULT CHILDHOOD CANCER SURVIVORS Table 4. Percentage of Adult Survivors of Childhood Cancer Treated With Therapies Associated With Increased Risk for Late Effects Reporting an Absence of the Following Types of Outpatient Medical Care in a 2-Year Period, Compared With All Survivors Absence of General General Cancer- Cancer Medical Physical Related Center Contact Examination Medical Visit Medical Visit Total % OR (95% CI) % OR (95% CI) % OR (95% CI) % OR (95% CI) Variable No. Chest-mantle RT No 6,013 12.5 1.00 Referent 30.6 1.00 Referent 59.4 1.00 Referent 79.7 1.00 Referent Yes 1,802 8.2 0.68 0.57–0.83 24.6 0.64 0.56–0.73 47.9 0.60 0.53–0.67 70.3 0.50 0.43–0.57 Anthracycline <300 mg/m 6,459 11.1 1.00 Referent 29.4 1.00 Referent 53.6 1.00 Referent 72.6 1.00 Referent ≥300 mg/m 1,508 10.7 0.88 0.73–1.06z 27.4 0.96 0.84–1.11 51.7 0.77 0.68–0.88 69.8 0.65 0.56–0.75 Bleomycin No 7,642 12.2 1.00 Referent 29.4 1.00 Referent 58.4 1.00 Referent 81.5 1.00 Referent Yes 581 7.8 0.58 0.42–0.81 25.7 0.80 0.65–0.99 40.8 0.48 0.40–0.58 67.0 0.47 0.38–0.57 High-risk therapy* No 4,304 13.2 1.00 Referent 31.3 1.00 Referent 61.9 1.00 Referent 83.1 1.00 Referent Yes 3,449 10.0 0.70 0.60–0.82 26.4 0.74 0.66–0.83 50.7 0.58 0.53–0.65 71.1 0.45 0.39–0.50 Note: results adjusted for age, sex, and race; percentages are based upon the total with available data for each variable. OR = odds ratio; CI = confi dence intervals; RT = radiation therapy. * High-risk therapy: treatment with any of the following: chest-mantle radiation, anthracycline >300 mg/m , bleomycin, etoposide, or ifosfamide. Although primary care physicians provide general sicians, and foster ongoing communication between health care for most survivors, there has not been a survivors, cancer centers, and primary care physicians national effort to foster linkages between childhood need to be developed and tested. cancer centers and primary care physicians to enhance There are several limitations of this study that are risk-based care. There is a paucity of information important to consider when interpreting the fi ndings. about this population in primary care-based journals, First, health care utilization was based upon self- and there is no mention of this population in primary report by respondents and was not externally verifi ed. care textbooks, resident curricula, or continuing medi- Second, the determination of cancer-related medical cal education monographs. Finally, compounding visits was based upon the survivor’s perception of the this lack of dissemination of information, survivors reasons for the medical visit. There are times when a represent a small percentage of a typical primary care health care professional might have seen a survivor and physician’s practice. In addition, providing appropri- screened for late effects of therapy without the survivor ate risk-based care to survivors, who are a heteroge- understanding the rationale for testing. Similarly, the neous group, is complicated by the variety of cancers content of the visit as it pertained to appropriate risk diagnosed at different ages and treatment eras and by assessment and screening based upon previous therapy recommendations for screening and surveillance that and modifying factors, such as unhealthy behaviors are constantly evolving. As a result, there is a critical or genetic predisposition for different diseases, was need for cancer centers, primary care physicians, and not determined from whether a survivor had a general survivors to communicate and share information. physical examination or a cancer-related visit. Third, Readers are directed to http://www.cancer.umn.edu/ though nationally 25% of new childhood cancers are in ltfu for general information regarding risks of this patients of ethnic minorities, only 12.2% of this sur- population (see project newsletters). It is important that vivor cohort belonged to an ethnic minority. Because recommendations for risk-based care, based on current the collaborating institutions did not regularly collect evidence, be disseminated in primary care journals and race and ethnicity information on all patients treated textbooks. As an example, Oeffi nger et al provided between 1970 and 1986, it cannot be determined recommendations for primary care physicians caring whether this low percentage of ethnic minorities rep- for leukemia survivors. To optimize risk-based care of resents a selection bias, a limitation in generalizability, this vulnerable population, interventions to educate or a lower proportion of minority survivors treated at survivors, enhance their transition to primary care phy- these institutions. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004 68 ADULT CHILDHOOD CANCER SURVIVORS Despite these limitations, our fi ndings likely over- National Medical Center, Washington, DC; A. Kim Ritchey, MD, Children’s Hospital of Pittsburgh, Pa; Leslie L. Robison, PhD, University of Minne- estimate the percentage of long-term survivors who sota, Minneapolis, Minn; Kathy Ruccione, RN, MPH, Children’s Hospital are receiving risk-based health care. Completion of the Los Angeles, Calif; Charles Sklar, MD, Memorial Sloan-Kettering Cancer lengthy questionnaire required a degree of sophistica- Center, New York, NY; W. Anthony Smithson, MD, Mayo Clinic, Rochester, tion and interest on the part of the responding survi- Minn; Louise Strong, MD, U.T.MD Anderson Cancer Center, Houston, Tex; vors, and it is probable that the nonrespondents are Terry A. Vik, MD, Riley Hospital for Children, Indianapolis, Ind; Yutaka Yasui, PhD, Fred Hutchinson Cancer Center, Seattle, Wa; Lonnie Zeltzer, even less likely to have adequate risk-based health care. MD, University of California-Los Angeles, Calif. In conclusion, though most adult survivors of child- hood cancer in this large cohort study reported some Former Institutional Principal Investigators: Holcombe Grier, MD, type of contact with the medical system, the likeli- Dana-Farber Cancer Institute, Boston, Mass; Thomas Pendergrass, MD, hood of a cancer-related visit or a physical examination Children’s Hospital and Medical Center, Seattle, Wa; Teresa Vietti, MD, St. Louis Children’s Hospital, Mo; Lorrie Odom, MD, Children’s Hospital, decreased at an age when the incidence of modifi able Denver, Colo; Frederick Ruymann, MD, Columbus Children’s Hospital, late effects are increasing. Primary care physicians Ohio; Julie Blatt, MD, Children’s Hospital of Pittsburgh, Pa; Gerald Gil- provide health care for most of this growing high-risk christ, MD, Mayo Clinic, Rochester, Minn; Robert Weetman, MD, Riley population. To optimize risk-based care, it is critical Hospital for Children, Indianapolis, Ind; John Potter, MD, PhD, Fred that cancer centers and primary care physicians develop Hutchinson Cancer Center, Seattle, Wa. methods to communicate effectively and longitudinally. Member CCSS Steering Committee: John Boice, ScD, International To read commentaries or to post a response to this article, see it Epidemiology Institute, Rockville, MD; Norman Breslow, PhD, University online at http://www.annfammed.org/cgi/content/full/2/1/61. of Washington, Seattle, Wa; Kevin Oeffi nger, MD, UT-Southwestern Medi- cal Center at Dallas, Tex; Frederick Li, MD, Dana-Farber Cancer Institute, Key words: Survivors; neoplasms; delivery of health care; cohort Boston, Mass; Daniel M. Green, MD, Roswell Park Cancer Institute, Buf- falo, NY; Melissa Hudson, MD, St. Jude Children’s Research Hospital, Submitted December 13, 2002; submitted, revised, January 31, 2003; Memphis, Tenn; Anna Meadows, MD, Bobbie Bayton, Children’s Hospital accepted February 18, 2003. of Philadelphia, Pa; John Mulvihill, MD, Children’s Hospital, Oklahoma City, Okla; Stephen Qualman, MD, Columbus Children’s Hospital, Ohio; Versions of this paper were presented at the North American Primary Care Roger Packer, MD, Children’s National Medical Center, Washington, DC; Research Group 30th Annual Conference, New Orleans, La, November 18, Leslie L. Robison, PhD, Ann Mertens, PhD, Joseph Neglia, MD, MPH, 2002; and at the Seventh International Conference on Long-Term Compli- Mark Nesbit, MD, Stella Davies, MD, PhD, University of Minnesota, cations of Treatment of Children and Adolescents for Cancer, Niagara-on- Minneapolis, Minn; Charles Sklar, MD, Memorial Sloan-Kettering Cancer the-Lake, Ontario, Canada, June 29, 2002. Center, New York, NY; Malcolm Smith, MD, Martha Linet, MD, National Cancer Institute, Bethesda, Md; Louise Strong, MD, Marilyn Stovall, PhD, Funding support: This work was supported by Grant 5U01-CA-55727-05 U.T.MD Anderson Cancer Center, Houston, Tex; John Potter, MD, PhD, from the Department of Health and Human Services and funding to the Fred Hutchinson Cancer Center, Seattle, Wa; Lonnie Zeltzer, MD, Univer- University of Minnesota from the Children’s Cancer Research Fund. Dr. sity of California-Los Angeles, Calif. 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Grovas A, Fremgen A, Rauck A, et al. The National Cancer Data Base one JV, eds. Ensuring Quality Cancer Care. Washington, DC: National Report on patterns of childhood cancers in the United States. Cancer. Academy Press, 1999. 1997;80:2321-2332. ANNALS OF FA MILY MEDICINE WWW.ANNFAMMED.ORG VOL. 2, NO. 1 JA NUARY/FEBRUA RY 2004

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Published: Jan 1, 2004

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