Curative therapy for childhood cancer has improved significantly in the last 2 decades such that, at present, approximately 80% of all children with cancer are likely to survive > or = 5 years after diagnosis. Prevention, early diagnosis, and treatment of long-term sequelae of therapy have become increasingly more significant as survival rates continue to improve. Cardiovascular disease is a well-recognized cause of increased late morbidity and mortality among survivors of childhood cancer. The Children's Oncology Group Late Effects Committee and Nursing Discipline and Patient Advocacy Committee have recently developed guidelines for follow-up of long-term survivors of pediatric cancer. A multidisciplinary task force critically reviewed the existing literature to evaluate the evidence for the cardiovascular screening recommended by the Children's Oncology Group guidelines. In this review we outline the clinical manifestations of late cardiovascular toxicities, suggest modalities and frequency of monitoring, and address some of the controversial and unresolved issues regarding cardiovascular disease in childhood cancer survivors.
In this study, we set out to determine the preferences, concerns, and attitudes toward fertility preservation of adult male survivors of pediatric cancer and their parents. We conducted 3 focus groups with a total of 15 male survivors of pediatric cancer (age at diagnosis: mean=14, range: 10-20; age at study: mean=35, range: 25-47) and 2 groups with a total of 7 parents of survivors. Grounded theory methodology was used for the identification and analysis of recurrent themes expressed by survivors and their parents in the course of focus group discussions. Themes most frequently expressed by survivors included concern regarding long-term treatment effects and a retrospective desire for fertility impairment to have been discussed when they were originally diagnosed with cancer. Parental themes included the same hindsight desire, as well as reliance upon the treating oncologist for direction in selecting the course of treatment, and an acknowledgment that input from a specialist in fertility preservation would have been beneficial. Although future reproductive potential was not consistently reported as a source of apprehension when diagnosed with cancer, both survivors and their parents noted it to be a paramount concern later in life. Parents and survivors both reported that fertility preservation discussions should be routinely incorporated in the clinical context of a pediatric cancer diagnosis.
(1) Purpose To describe survivorship services provided by the Children's Oncology Group (COG), an assessment of services was undertaken. Our overall aim was 1) to describe survivorship services, including the extent of services provided, resources (personnel, philanthropy, research funding), billing practices, and barriers to care and 2) to describe models of care that are in use for childhood cancer survivors and adult survivors of childhood cancer. (2) Methods 179 of 220 COG institutions (81%) completed an internet survey. (3) Results One hundred fifty-five (87%) reported providing survivorship care. Fifty-nine percent of institutions provide care for their pediatric population in specialized late effects programs. For adult survivors, 47% of institutions chose models of care which included transitioning to adult providers for risk-based health care, while 44% of institutions keep survivors indefinitely at the treating institution (Cancer Center Based Model without Community Referral). Sixty-eight percent provide survivors with a copy of their survivorship care plan (SCP). Only 31% of institutions provide a detailed summary of results after each clinic visit, and 41% have a database to track survivor health outcomes. Survivorship care for initial and annual visits is estimated to be minimally 122 and 91 minutes respectively. The most prevalent barriers to care were the lack of dedicated time for program development and a perceived insufficient knowledge on the part of the clinician receiving the transition referral. (4) Conclusions Not all COG institutions provide dedicated survivorship care, care plans, or have databases for tracking outcomes. Transitioning to adult providers is occurring within the COG. Survivorship care is time-intensive.
Building on 40 years of progress in cancer detection and treatment, survival rates for childhood cancers have risen from 20 % to almost 80 % [1,2]. Approximately 270,000 Americans are childhood cancer survivors and, by 2010, an estimated 1 in every 250 adults will be living with a history of childhood cancer [2,3]. The early and late effects of treatment are beginning to take on greater importance for survivors, their families and providers [4]. Increasing numbers of childhood cancer survivors are beginning to face a new challenge in returning to normalcy after cancer.
A B S T R A C T PurposeChildhood cancer survivors are at increased risk for adverse outcomes and chronic medical conditions. Treatment-related scarring, disfigurement, and persistent hair loss, in addition to their long-term impact on psychological distress or health-related quality of life (HRQOL), have received little attention. Patients and MethodsSelf-reported scarring/disfigurement and persistent hair loss were examined in 14,358 survivors and 4,023 siblings from the Childhood Cancer Survivor Study. Multivariable models were used to examine associations with demographic and cancer treatment. The impact of disfigurement and hair loss on HRQOL (ie, Medical Outcomes Short Form-36) and emotional distress (ie, Brief Symptom Inventory-18) was examined. ResultsSurvivors reported a significantly higher rate of scarring/disfigurement compared with siblings for head/neck (25.1% v 8.4%), arms/legs (18.2% v 10.2%), and chest/abdomen (38.1% v 9.1%), as well as hair loss (14.0% v 6.3%). In age-, sex-, and race-adjusted models, cranial radiation exposure Ն 36 Gy increased risk for head/neck disfigurement (relative risk [RR], 2.42; 95% CI, 2.22 to 2.65) and hair loss (RR, 4.24; 95% CI, 3.63 to 4.95). Adjusting for cranial radiation, age, sex, race, education, and marital status, survivor hair loss increased risk of anxiety (RR, 1.60; 95% CI, 1.23 to 2.07), whereas head/neck disfigurement increased risk of depression (RR, 1.19; 95% CI, 1.01 to 1.41). Limitations due to emotional symptoms were associated with head/neck disfigurement (RR, 1.24; 95% CI, 1.10 to 1.41), arm/leg disfigurement (RR, 1.19; 95% CI, 1.05 to 1.35), and hair loss (RR, 1.26; 95% CI, 1.09 to 1.47). ConclusionSurvivors of childhood cancer are at increased risk for disfigurement and persistent hair loss, which is associated with future emotional distress and reduced quality of life. Future studies are needed to better identify and manage functional outcomes in these patients.
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