Long-term Follow-up Guidelines Research Articles

Endocrine Health Problems Detected in 519 Patients Evaluated in a Pediatric Cancer Survivor Program

Many pediatric cancer survivors have endocrine conditions. Surveillance for late effects is recommended by national guidelines. Endocrine surveillance is recommended after alkylating agents, steroids, methotrexate, and radiation. The objective of the study was to describe the endocrine outcomes in patients followed up in a program that uses national screening guidelines. The design of the study was a medical records review. The study was conducted in the Comprehensive Cancer Survivor Program, an academic pediatric oncology program. The study included 519 pediatric and young adult survivors of noncentral nervous system childhood malignancies between January 1, 2001, and December 15, 2005. Patients were evaluated with history, physical examinations, and evaluations recommended in the Children's Oncology Group's Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers. The frequency and types of endocrine conditions were measured. Four hundred eighty endocrine conditions were observed in 299 survivors (57.6% of survivors). The most common types of endocrine conditions were problems with weight and gonadal function. In a Cox regression model, stem cell transplant, radiation, and older age at cancer diagnosis were associated with higher hazard of an endocrine condition. Radiation, stem cell transplant, and sarcoma diagnosis were associated with growth problems. Endocrine disorders were common after pediatric cancers. Endocrinologists should be aware of national guidelines, anticipate referral of pediatric cancer survivors, and participate in further research to optimize screening for and treatment of endocrine effects of cancer therapy.

Long-term health impacts of hematopoietic stem cell transplantation inform recommendations for follow-up

Advances in transplantation techniques and supportive care strategies have resulted in a significant improvement in survival of those who have undergone treatment. However, hematopoietic stem cell transplantation (HSCT) survivors are at risk of developing long-term complications, such as endocrinopathies, musculoskeletal disorders, cardiopulmonary compromise and subsequent malignancies. These complications have a direct impact on the morbidity and mortality experienced by HSCT survivors. Two-thirds of HSCT survivors develop at least one chronic health condition; while a fifth develop severe or life-threatening conditions. HSCT patients who have survived for at least 5 years post-transplantation are at a fourfold to ninefold increased risk of late mortality for as long as 30 years from HSCT, producing an estimated 30% lower life expectancy compared with the general population. The high burden of morbidity experienced by HSCT survivors makes it critically important that there is standardized follow-up of HSCT survivors at high risk for post-HSCT complications. The Center for International Blood and Marrow Transplant Research/European Group for Blood and Marrow Transplantation/American Society for Blood and Marrow Transplantation and the Children’s Oncology Group long-term follow-up guidelines offer such standardized care. Future steps include wider dissemination and refinement of these guidelines.

Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: A survey of the American Academy of Family Physicians (AAFP).

9128 Background: Little is known about primary care physicians’ attitudes and knowledge regarding the health and long term follow-up (LTFU) of childhood cancer survivors (CCS). We sought to obtain family physicians’ (FPs) self-reported preferences and knowledge regarding this population. Methods: Following a pre-notification letter, surveys with a $2 bill were mailed to 1520 physicians from the AAFP membership directory in November 2010. A second mailing to non-responders is ongoing. Results: To date, 529 FPs have responded (35% response rate). Respondents have practiced a median of 25 years and see a median of 80 patients/week. In the last five years, 63% had seen at least one CCS in their practice; about half (54%) report almost never receiving a treatment summary. Among 3 specific cancer types, respondents’ discomfort in caring for CCS (1 = very uncomfortable; 7 = very comfortable) was greatest for osteosarcoma survivors (3.2 ± 1.7), less with ALL survivors (3.3 ± 1.7), and least with Hodgkin lymphoma (HL) survivors (mean ± SD 3.6 ± 1.7). The majority (82%) prefer to care for CCS in consultation with a cancer center based physician and/or LTFU clinic. A vignette of a 29-year-old female treated for HL with mantle radiation at age 16 was provided, participants were asked a series of follow-up monitoring questions. Concordance of responses to the Children’s Oncology Group LTFU Guidelines was: breast cancer surveillance, 18%; cardiac surveillance; 10%, and thyroid surveillance, 71%. Only 3% were concordant with all three of these questions. Concordance with breast cancer and cardiac questions was associated with reported familiarity with guidelines (OR=3.49, 95% CI 1.79-6.78; OR=3.73, 95% CI 1.73-8.04, respectively). In describing what would be most useful to care for CCS (1=not at all useful; 5=very useful), among 11 options, FPs reported the most preferred were access to LTFU guidelines (4.7 ± 0.6) and a patient-specific care plan (4.7 ± 0.6). Conclusions: While the majority of FPs are willing to follow CCS, they express some discomfort with this care, appear unfamiliar with the available LTFU guidelines and prefer to follow patients in collaboration with a cancer center.

Physician preferences and knowledge regarding the care of childhood cancer survivors in Japan: A mailed survey of the Japanese Society of Pediatric Oncology.

e19522 Background: Japanese physicians’ attitudes regarding the health care needs of childhood cancer survivors (CCSs) are not well described. Thus we examined the self-reported preferences and knowledge of pediatric oncologists and surgeons concerning this population. Methods: A mailed survey was sent to 858 physician members of the Japanese Society of Pediatric Oncology in October 2010 according to the methods of Henderson et al (JCO 28 (5):878, 2010). Results: A total of 405 surveys were returned (47% response rate); of which 300/533 pediatric oncologists and 105/325 and surgeons responded, respectively. Respondents’ median age was 46 and 48 years, respectively; 79% and 84% men. There were no differences between physicians excluding living area distributions and educational opportunities of late effects. Less than one third of respondents (31%) report referring survivors to other physicians. When comfort levels in caring for CCSs were described (1 = very uncomfortable; 7 = very comfortable), physicians were most comfortable with CCS <= 21years (4.4 ± 1.3 and 3.8±1.4), less comfortable with CCSs > 21 years but < 30 years old (3.6 ± 1.4 and 3.6 ± 1.4), and least comfortable with CCS >30 years (2.8 ± 1.5 and 3.3 ± 1.6). Familiarity with long-term follow-up guidelines was quite lower in surgeons (2.8 ± 1.4 vs 1.5 ± 1.4). In response to a clinical vignette of a 25 year old woman treated at 1 year with prophylactic cranial radiation (24 Gy), 62 % of pediatric oncologists and 43% of surgeons answered 3 or more questions regarding follow-up frequency, Hepatitis C surveillance, and late effects of cranial radiation in concordance with Japanese recommendations. Logistic regression analysis limited to pediatric oncologists showed learning experience (OR= 1.75; 95% CI, 1.05 to 2.93); practicing in a children’s hospital (OR 5.11; 95% CI, 1.15 to 22.8); and practicing in a general hospital (OR, 0.55; 95% CI, 0.32 to 0.95) were associated with answering three or more questions correctly. Conclusions: Preferences and knowledge with regard to long-term follow-up care of CCSs differ between pediatric oncologists and surgeons in Japan; pediatric oncologists appear to be more comfortable.

Characteristics of childhood cancer survivors who attend long-term follow-up (LTFU) clinic.

9566 Background: Although the Children’s Oncology Group developed LTFU guidelines for childhood cancer survivors, the majority of adult survivors do not receive risk-based care through a LTFU program. This study aimed to identify characteristics of pediatric cancer survivors who return to a LTFU Clinic for care compared with patients who do not. Methods: Chart review of patients eligible to be seen in the LTFU Clinic who completed treatment between 1/1990 and 11/2010. Patient characteristics (demographics, school functioning, high-risk behaviors such as using drugs, alcohol, cigarettes) and treatment characteristics (diagnosis, treatment) were abstracted from medical records. Review of 137 charts so far revealed that eligible patients ranged in age from 6 to 37 years (M = 22.5, SD = 6.8), were 52.6% male, 88.3% Caucasian, and completed treatment about 13 years earlier. Point biserial correlations and Chi-square analyses were used to determine associations between patient and treatment characteristics and LTFU attendance. Results: 46.7% of patients had attended LTFU Clinic within 2 years of their last recommended follow-up. Current age was significantly inversely associated with current attendance, rpb = -.47, p < .001. Similarly, patients aged >18 were less likely to be current compared with patients <18, χ2(1) = 30.45, p < .001. There were no significant differences based on treatment received (surgery, radiation, chemotherapy), risk status for late effects, or documented late effects. Patients were less likely to be current if they had a documented psychiatric disorder (e.g., depression, anxiety), χ2(1) = 5.79, p = .016 or had reported past or ongoing drug use, χ2(1) = 4.68, p = .031. For patients >18 at last visit, there was a non-significant trend suggesting those who were married were more likely to be current, χ2(1) = 2.83, p = .09. Conclusions: Adult survivors of childhood cancer are less likely than younger counterparts to participate in recommended LTFU at a pediatric institution. Significant factors associated with current attendance included age and psychosocial issues, such as documented psychiatric problems and drug use. Patients like these may require additional monitoring to promote engagement in LTFU care.

Echocardiographic surveillance for asymptomatic late‐onset anthracycline cardiomyopathy in childhood cancer survivors

The optimal frequency of echocardiographic surveillance in asymptomatic childhood cancer survivors exposed to anthracyclines has not been established. We evaluated the effectiveness of performing surveillance echocardiograms according to the Children's Oncology Group's (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers in survivors ≥1 year from concluding therapy. We reviewed all children treated at our institution with anthracycline chemotherapy from 1995 to 2003. We assessed the frequency of abnormal echocardiograms according to risk groups defined in the COG guidelines, and evaluated the risk factors for an abnormal echocardiogram using Cox proportional hazards modeling. At least one echocardiogram was completed by 469/603 (77.8%) eligible survivors. Mean diagnosis age was 7.7 (SD = 4.6) years. Mean cumulative doxorubicin-equivalent dose was 205 mg/m(2) (SD = 115). Survivors completed 1,013 echocardiograms (median = 2, range =1-10) beyond 1 year after concluding therapy. Seventy-nine (16.8%) survivors had an abnormal echocardiogram at a median of 2.9 years (range 0.01-9.8) from 1 year after concluding therapy. Anthracycline dose >300 mg/m(2) (hazard ratio [HR] 3.00; 95% CI 1.51-5.98), age 1-4 years at treatment (HR 1.89; 95% CI 1.08-3.31) and radiation to a field involving the heart (HR 1.73; 95% CI 1.08-2.76) predicted an increased risk of an abnormal echocardiogram; however, even survivors in the lower COG risk groups demonstrated abnormalities. Periodic echocardiographic surveillance in childhood cancer survivors can yield abnormalities that require further evaluation. Abnormalities may become evident as early as 1 year after the conclusion of therapy and can impact even those survivors considered to be at low risk.

Testicular Cancer Survivorship: Research Strategies and Recommendations

Testicular cancer represents the most curable solid tumor, with a 10-year survival rate of more than 95%. Given the young average age at diagnosis, it is estimated that effective treatment approaches, in particular, platinum-based chemotherapy, have resulted in an average gain of several decades of life. This success, however, is offset by the emergence of considerable long-term morbidity, including second malignant neoplasms, cardiovascular disease, neurotoxicity, nephrotoxicity, pulmonary toxicity, hypogonadism, decreased fertility, and psychosocial problems. Data on underlying genetic or molecular factors that might identify those patients at highest risk for late sequelae are sparse. Genome-wide association studies and other translational molecular approaches now provide opportunities to identify testicular cancer survivors at greatest risk for therapy-related complications to develop evidence-based long-term follow-up guidelines and interventional strategies. We review research priorities identified during an international workshop devoted to testicular cancer survivors. Recommendations include 1) institution of lifelong follow-up of testicular cancer survivors within a large cohort setting to ascertain risks of emerging toxicities and the evolution of known late sequelae, 2) development of comprehensive risk prediction models that include treatment factors and genetic modifiers of late sequelae, 3) elucidation of the effect(s) of decades-long exposure to low serum levels of platinum, 4) assessment of the overall burden of medical and psychosocial morbidity, and 5) the eventual formulation of evidence-based long-term follow-up guidelines and interventions. Just as testicular cancer once served as the paradigm of a curable malignancy, comprehensive follow-up studies of testicular cancer survivors can pioneer new methodologies in survivorship research for all adult-onset cancer.

Screening for cardiac dysfunction and cardiovascular risk factors in childhood cancer survivors using the Children's Oncology Group (COG) Long-term Follow-up (LTFU) Guidelines.

9034 Background: Childhood cancer survivors are at risk for cardiac dysfunction (CD) due to exposure to anthracyclines and chest radiation. This risk is further compounded by cardiovascular (CV) risk factors (hypertension, dyslipidemia, insulin resistance, overweight/obesity) in this population. COG Guidelines use a consensus-based approach to recommend screening due absence of randomized trials for guidance. The utility and yield of these recommendations need to be evaluated. Methods: Survivors were screened for CD or CV risk factors per COG Guidelines. Screening outcomes: CD (ejection fraction <55%); CV risk factors (dyslipidemia [triglyceride ≥150 mg/dl and/or total cholesterol ≥200 mg/dl]; hypertension [≥130/≥85; <18y: ≥90% age]; insulin resistance [homeostasis model assessment of insulin resistance (HOMA-IR) >2.86]; overweight/obese [BMI ≥25kg/m2]). Results: 310 survivors underwent screening (47% female; median age at diagnosis: 11.4 years; at screening: 24.1 years; time from diagnosis: 10.9 years; leukemia [44%], lymphoma [28%], solid tumor [28%]); median anthracycline dose: 225 mg/m2 (25-642). Cardiac dysfunction: among those with ≥2 echocardiograms (n = 129), 18.5% were identified with previously undiagnosed CD (45.8% on first screen, 54.2% on subsequent screening). The prevalence was highest (25.0%) for anthracycline ≥250 mg/m2 with radiation, and lowest (13.3%) for anthracycline <250 mg/m2 without radiation. CV risk factors: 30.1% of survivors screened had ≥2 CV risk factors. Males (OR: 3.5, p<0.01), age at screening (OR: 1.1/yr, p = 0.02), and cranial radiation >18 Gy (OR: 3.1, p = 0.04) were associated with increased risk. Males treated with <18Gy cranial radiation were at highest risk (OR: 17.1, p<0.01). Conclusions: Screening per COG LTFU Guidelines helped identify previously unrecognized CD or CV risk factors in up to 30% of “at risk” survivors, reinforcing the critical need for long-term cardiac surveillance in this population. This study also attempts to refine consensus-based screening recommendations by identifying subgroups with highest or lowest yield per current screening recommendations. No significant financial relationships to disclose.

Yield from risk-based screening in adults treated for cancer in childhood.

9010 Background: To improve health outcomes after childhood cancer, all survivors should have risk-based care that includes tailored surveillance based on the previous cancer and cancer therapy. We determined the prevalence of previously undetected cancer-related toxicities in adults surviving childhood cancer evaluated by risk-based health screening. Methods: We evaluatedadult survivors of childhood cancer (≥ 18 years old, ≥ 10 years from diagnosis) participating in the ongoing St. Jude Lifetime (SJLIFE) study. To date, 93% of contacted survivors have agreed to participate. All underwent risk-based assessments appropriate for cancer diagnosis/treatment as recommended by the Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. To direct risk-based assessment, chemotherapy cumulative doses, radiation fields/doses, and surgical procedures were abstracted from medical records. Results: As of08/29/2009, 626 SJLIFE participants completed risk-based assessments (56% female; 91% white, non-Hispanic). Median age was 7.6 years (range, 0-22.7) at diagnosis and 37.2 years (range, 20.5-62.5) at evaluation. Median time from diagnosis was 28.5 years (range, 12.3-47.4). Primary diagnoses comprised leukemia (n = 334), lymphoma (n = 143), and solid tumor (n = 149). Subclinical toxicity detected by risk-based screening is summarized below (Table). Conclusions: Risk-based screening approximately 3 decades after diagnosis of childhood cancer detected previously undiagnosed cancer-related toxicity in a substantial proportion of survivors. Risk-based screening identifies individuals who may be candidates for interventions designed to slow or prevent progression of subclinical disease. Organ system No (%) at risk No (%) diagnosed before screening No (%) new events detected by screening Cardiovascular 500 51 (10) 246 (49) Endocrine 412 130 (32) 33 (8) Hepatic 439 1 (<1) 1 (<1) Infectious 443 52 (12) 5 (1) Musculoskeletal 418 42 (10) 127 (30) Neurocognitive measures 381 155 (41) 192 (52) Neurologic 545 31 (6) 138 (25) Neurosensory 420 62 (15) 194 (46) Pulmonary 164 81 (49) 52 (32) Reproductive 484 133 (27) 138 (29) Urinary tract 590 32 (5) 24 (4) Second malignancy 626 99 (16) 20 (3) No significant financial relationships to disclose.

Severity of health conditions identified in a pediatric cancer survivor program

The Common Terminology Criteria for Adverse Events v3.0 (CTCAE) was designed for reporting acute and late effects of cancer treatment. To date, no study of pediatric-aged cancer survivors has graded health conditions using CTCAE, for patients in active follow-up in a cancer survivor program. Medical records were reviewed on 519 survivors of non-central nervous system childhood malignancies seen in the Cancer Survivor Program between January 1, 2001 and December 15, 2005. Health problems identified through histories, physicals, and recommended evaluation using the Children's Oncology Group (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancer were graded using the CTCAE. Overall, 1,625 adverse health conditions were reported or detected in 519 pediatric-age cancer survivors (mean age at diagnosis 4.8 years; mean age at first survivor visit 12.1 years). The majority of conditions were mild (47.4% Grade 1) or moderate (35.2% Grade 2); however, 17.4% of conditions were severe (Grade 3) or life-threatening/disabling (Grade 4). Only 12.1% of survivors had no adverse condition, and 36.2% of survivors had a Grade 3 or 4 condition. In a Cox multivariate analysis risk factors for a Grade 3 or 4 condition included minority race, diagnosis of other malignancy, older age, and a history of a hematopoietic stem cell transplant. The majority of adverse health conditions in pediatric-aged cancer survivors are mild; however, a significant percentage will have a serious condition. Long-term follow-up with a multidisciplinary approach is essential to detect and intervene in health problems early.

Physician Preferences and Knowledge Gaps Regarding the Care of Childhood Cancer Survivors: A Mailed Survey of Pediatric Oncologists

PURPOSE Little is known about physicians' attitudes and knowledge regarding the health care needs of childhood cancer survivors (CCS). We sought to obtain pediatric cancer physicians' self-reported attitudes and knowledge regarding this population. METHODS A mailed survey was sent to 1,159 pediatric oncologists in the United States. Results A total of 655 surveys were returned (ie, 57% response rate). Median age of respondents was 47 years (range, 31 to 82 years); 57% were men. Respondents practiced for a median 14 years (range, 1 to 50 years) and reported seeing a median of 21 patients per week (range, 0 to 250 patients per week). When comfort levels in caring for CCS were described (ie, 1 = very uncomfortable; 7 = very comfortable), respondents were most comfortable with survivors < or = 21 years (mean +/- standard deviation, 6.2 +/- 1.3 level), were less comfortable (5.0 +/- 1.5 level) with those older than 21 years but less than 30 years old, and were uncomfortable with CCS > or = 30 years (2.9 +/- 1.7 level). In response to a clinical vignette of a 29-year-old woman treated with mantle radiation for Hodgkin's lymphoma at 16 years of age, and on the basis of available guidelines, 34% of respondents did not appropriately recommend yearly breast cancer surveillance; 43% of respondents did not appropriately recommend cardiac surveillance; and 24% of respondents did not appropriately recommend yearly thyroid surveillance. Those with greater self-reported familiarity with available long-term follow-up (LTFU) guidelines (odds ratio [OR], 1.33; 95% CI, 1.15 to 1.54) and with receipt of training in the care of CCS (OR, 1.73; 95% CI, 1.18 to 2.52) were more likely to have answered all three questions correctly. CONCLUSION Pediatric oncologists express a range of preferences with regard to LTFU of CCS. Many appear unfamiliar with LTFU surveillance guidelines.

Human papillomavirus vaccination in survivors of childhood cancer

Effective vaccination is now available to prevent human papillomavirus (HPV), the most common sexually transmitted infection and the cause of cervical cancer, which is the second most common cancer among women worldwide. HPV vaccine uptake is particularly important for females surviving cancer, some of whom are at high risk for HPV complications because of the direct and indirect effects of cancer treatment. Thus, version 3.0 of the Children's Oncology Group's Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer recommends HPV vaccination for all eligible females surviving childhood cancer. Because this vaccine was only approved by the US Food and Drug Administration in 2006, little is known regarding the complexity of vaccination uptake among those surviving cancer. The purpose of this article was to describe the HPV vaccine and its usefulness in the survivorship population, provide a rationale for describing cancer survivors as being at increased risk for HPV complications, identify factors associated with HPV vaccination, and discuss the utilization of these predictors in designing strategies to promote adherence to HPV vaccination recommendations within the survivorship context.

Clinical practice guidelines for the psychosocial care of cancer survivors

Upon completion of their primary treatment, many cancer survivors become "lost in transition," and receive inadequate or, at best, poorly coordinated follow-up care. Unmet psychosocial and educational needs figure prominently among the concerns identified by survivors of adult-onset cancers in the post-treatment period. This article focuses on the role clinical practice guidelines could play in improving the quality of psychosocial care provided to these post-treatment survivors. After defining clinical practice guidelines and describing their development, the article provides an overview of existing clinical practice guidelines for the psychosocial care of cancer patients and identifies their strengths and weaknesses. A major weakness relevant to this article is that none of the existing guidelines focus on the post-treatment period. Two recent efforts in the field of cancer survivorship are identified that should stimulate and inform the development of guidelines for psychosocial care in the post-treatment period. One effort is the growing movement to implement survivorship care planning at the end of primary treatment. Assessing and addressing unmet and anticipated psychosocial needs have been identified as major components of survivorship care planning. The other effort is the release by the Children's Oncology Group of Long-term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. These guidelines provide a useful model of how guidelines for the psychosocial care of survivors of adult-onset cancers might be developed, organized, and implemented.

A cross-Canada survey of clinical programs for the care of survivors of cancer in childhood and adolescence

More than 80% of children who have been recently diagnosed with cancer will survive for five years or more. A majority of these survivors are at risk for developing one or more long-term sequelae of their therapy. Thus, they all require specialized medical care that is focused on their specific risks. A survey of informants from all 17 paediatric cancer programs in Canada was conducted to determine the care offered to survivors of childhood cancer, both during their paediatric and adolescent years, as well as after they transition to adulthood. Sixteen informants representing all 17 centres responded to the survey by telephone or e-mail. Twelve of the 17 centres (71%) had a formal program or clinic dedicated to the care of survivors during their paediatric and adolescent years, while the remaining centres cared for survivors in their acute care oncology clinics. However, only six of 17 centres (35%) had access to a formal program for survivors once they reach adulthood. Fifteen of the 17 centres (88%) adhered to published long-term follow-up guidelines, and 13 of 17 centres (76%) provided a treatment summary and/or a survivorship care plan to each survivor before their transfer out of paediatric care. Despite the centralization of paediatric oncology care within 17 specialist centres and the availability of universal health care, many Canadian survivors of childhood cancer do not have access to clinics specializing in long-term risk-based survivor care, and this access further decreases once they reach adulthood.

Preferences and knowledge gaps among pediatric oncologists regarding the care of childhood cancer survivors: A survey of nearly 1,200 physicians

6561 Background: Pediatric oncologists' attitudes and knowledge about the long-term follow-up (LTFU) care of childhood cancer survivors (CCS) have not been well described. Methods: We surveyed pediatric oncologists' self-reported attitudes and knowledge regarding the LTFU care of CCS. Following a pre-notification letter, surveys with a $5 gift card were mailed to 1,173 U.S. pediatric oncologists in November 2008. A second mailing for non-responders is planned. Results: With surveys still arriving, 536 have been returned (46% response rate). Median age of respondents is 47 years (range: 32–82 years); 56% men; 69% work in a children's hospital; 17% in a cancer center; 3% in a private practice. Respondents have practiced a median 14 years (range: 1–50 years) and see a median of 23 patients/week (range: 0–250 patients/week). 70% of respondents say their center has a LTFU clinic. Choosing from closed-ended responses: 37% say they prefer to follow CCS as long as possible, 21% prefer for the patients to be followed by a physician other than themselves, and 29% are willing to follow them in the absence of a more suitable physician. In describing comfort levels in caring for CCS (1 = very uncomfortable; 7 = very comfortable), respondents were most comfortable with survivors &lt; 21 years (mean 6.2 + 1.4). For CCS &gt;21 but &lt;30 years, respondents were less comfortable (mean 5.0 + 1.5), and were uncomfortable caring for CCS &gt; 30 years (mean 3.3 + 1.7). 84% of respondents report eventually referring CCS to a LTFU program (40%), to a primary care physician (23%) or to an adult oncologist (12%). In a clinical vignette of 29 year old women exposed to mantle radiation and anthracyclines (150 mg/m2) for Hodgkin's lymphoma at 16 years of age: 30% of respondents did not appropriately recommend yearly breast cancer surveillance (based on Children's Oncology Group LTFU guidelines); 41% of respondents did not appropriately recommend cardiac surveillance; and 15% of respondents did not appropriately recommend yearly thyroid screening. Conclusions: Pediatric oncologists express a range of preferences with regard to LTFU of CCS and CCS over 21 years of age. Many appear unfamiliar with LTFU surveillance recommendations. No significant financial relationships to disclose.

Late effects on the urinary bladder in patients treated for cancer in childhood: A report from the Children's Oncology Group

Childhood cancer survivors who have had pelvic or central nervous system surgery or have received alkylator-containing chemotherapy or pelvic radiotherapy as part of their cancer therapy may experience urinary bladder late effects. This article reviews the medical literature on long-term bladder complications in survivors of childhood cancer and outlines the Children's Oncology Group Long-Term Follow-up (COG LTFU) Guidelines related to bladder function. An overview of the treatment of bladder late effects and recommended counseling for survivors with these complications are presented.

Renal late effects in patients treated for cancer in childhood: A report from the Children's Oncology Group

Improvements in childhood cancer therapy have led to increasing numbers of long-term survivors. These survivors are at risk for a variety of late effects due to the disease itself, treatment exposures (surgery, chemotherapy, and radiotherapy), underlying medical problems, and health behaviors. The COG LTFU Guidelines are risk-based, exposure-related recommendations for the identification and management of late effects due to therapies utilized in the treatment of childhood cancer, and are designed for asymptomatic survivors presenting for routine medical follow-up 2 or more years after completion of cancer therapy. The COG Guidelines Task Force on Urinary Tract Complications conducted an extensive review of the medical literature via MEDLINE. Specific treatment exposures which were reviewed include nephrectomy, chemotherapy regimens known to be nephrotoxic (cisplatin, carboplatin, ifosfamide, and methotrexate), and renal irradiation. Literature sources were ranked according to the strength of evidence and are cited in the review. This review summarizes the literature that supported the recommendations for cancer survivors at risk for nephrotoxicity previously outlined in the Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers (COG LTFU Guidelines).

Survey of long-term follow-up programs in the United States for adult survivors of childhood brain tumors

10047 Background: Despite recognition that childhood brain tumor survivors often suffer multiple late effects following therapy, little is known regarding the long-term follow-up (LTFU) programs for these patients. Methods: A 16 question survey was mailed to member institutions (n = 197) of the Children’s Oncology Group (COG) in the US. The survey asked about the size of the childhood brain tumor program, activities of the LTFU program, and barriers to follow-up. Results: 143 (72.6%) institutions returned surveys. Variation existed in the size of brain tumor centers, including <4 brain tumor patients/year (15.7%); 5 - 14 patients/year (41.0%); 15 - 29 patients/year (20.1%); and 30+ patients/year (23.1%). Care for brain tumor patients who were < 18 years old at diagnosis but are now > 21 years old was provided at a designated LTFU clinic for young adults (24.8%), neuro-oncology clinic (21.7%), pediatric oncology clinic (19.4%), adult neuro-oncology program (10.9%), or by other means (23.3%). 90.4% of programs reported integrating COG LTFU Guidelines into the care of their brain tumor survivors. Among medulloblastoma survivors, great variability existed among institutions’ reported use of growth hormone. Larger programs reported higher frequencies of growth hormone use among medulloblastoma survivors than smaller programs (p = < 0.001). Variability existed with regard to interval until discontinuation of surveillance MRIs among medulloblastoma survivors: < 5 years = 20.6%; 6 - 10 years = 37.4%; 11 - 20 years = 17.6%; and never = 24.4%. Among perceived barriers to care, respondents cited lack of insurance (35.3%), lack of funding or dedicated time for providers (24.4%), patients’ uncertainty or unwillingness to follow-up (22.7%), or patients being lost to follow-up (17.6%). Conclusions: Considerable variability exists among LTFU programs for adult survivors of childhood brain tumors. We recommend integration of the COG LTFU Guidelines and efforts to eliminate barriers to follow-up. No significant financial relationships to disclose.

Bone Mineral Density Deficits in Survivors of Childhood Cancer: Long-term Follow-up Guidelines and Review of the Literature

The development of curative therapy for most pediatric malignancies has produced a growing population of childhood cancer survivors who are at increased risk for a variety of health problems resulting from their cancer or its treatment. Because of the fact that many treatment-related sequelae may not become clinically apparent until the survivor attains maturity or begins to age, the ability of primary care providers to anticipate late effects of treatment is essential for providing timely interventions that prevent or correct these sequelae and their adverse effects on quality of life. Altered bone metabolism during treatment for childhood cancer may interfere with attainment of peak bone mass, potentially predisposing to premature onset of and more severe complications related to osteopenia and osteoporosis. Bone mineral deficits have been reported after treatment for a variety of pediatric malignancies and represent morbidity that can be reduced or prevented through lifestyle changes and attention to other common cancer-related sequelae such as hypogonadism. The Children's Oncology Group long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers provide risk-based surveillance recommendations that are based on expert opinion and review of the scientific literature for potential late effects of pediatric cancer therapy including osteopenia. This review summarizes the existing literature that has defined characteristics of cancer survivors at risk for bone mineral deficits and contributed to the surveillance and counseling recommendations outlined in the Children's Oncology group long-term follow-up guidelines.

“To Care for Him Who Shall Have Borne the Battle and for His Widow and His Orphan” (Abraham Lincoln): The Department of Veterans Affairs Polytrauma System of Care

Sigford BJ. “To care for him who shall have borne the battle and for his widow and his orphan” (Abraham Lincoln): the Department of Veterans Affairs Polytrauma System of Care.The initiation of combat in Iraq and Afghanistan has resulted in a new cohort of active-duty service members and veterans seeking rehabilitation care through the U.S. Department of Veterans Affairs (VA). Service members injured in combat most often sustain multiple injuries (polytrauma) and require a unique service delivery model to meet their needs. The VA recognized this need and responded with the development of the Polytrauma System of Care (PSC). This national system of care balances access and expertise to provide specialized life-long care to the combat injured. The PSC is comprised of: 4 specialized regional rehabilitation centers that are accredited in brain injury by the Commission on Accreditation of Rehabilitation Facilities; 21 specialized outpatient and subacute rehabilitation programs; designated polytrauma teams at smaller, more remote VA facilities; and a point of contact at all other VA facilities. In addition, the PSC has developed a proactive case-management model, a specialized telehealth network, guidelines for long-term follow-up, and services for those individuals who are unable to return home. The following commentary and articles provide additional detail on this new and unique system of care.