Long-term Follow-up Clinic Research Articles

Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors

Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics. Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of 'cancer identity' and 'cancer a thing of the past' and; (2) Emotional components included the subthemes of 'fear and anxiety' and 'gratitude and gaining perspective'. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor's life experience). Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care.

Long-Term Survivors of Cancer in Childhood and Adolescence

Significant improvements in the treatment of many pediatric malignancies have led to a growing population of long-term survivors of childhood cancer. Many of these survivors are at significant risk for late physical and psychosocial sequelae (“late effects”) as a result of their prior disease and its therapy. In some survivors (such as children treated for a brain tumor), late effects including endocrine dysfunction and neurocognitive challenges can develop during therapy and persist throughout life. In others (such as children and adolescents treated for Hodgkin’s lymphoma), late effects including congestive heart failure, pulmonary fibrosis and secondary breast cancers may not occur for many years, often once survivors have reached adulthood. During childhood, survivor care usually occurs at the pediatric cancer center, often in a specialized long-term follow-up clinic. However, adult survivors are usually cared for by primary care practitioners in their own communities. It is essential that the health care providers who will care for childhood cancer survivors as they age be aware of each survivor’s treatment exposures, long-term risks, and the surveillance strategies suggested for monitoring for these late effects. Strategies for effective transition from pediatric care and for ongoing communication between primary care practitioners and pediatric cancer centers need to be implemented to ensure that childhood cancer survivors receive appropriate care focused on their specific risks throughout their lifespan. Keywords: Childhood cancer, late effects, endocrine and neurocognitive dysfunction

Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan

PurposeTo facilitate family doctor-driven follow-up for adult childhood cancer survivors, we developed a survivor care plan (SCP) for adult survivors and their family doctors.MethodsThe SCP was accessible for survivors and their family doctors on a secure website and as a printed booklet. It included data on diagnosis, treatment and potential risks as well as recommendations for follow-up. Childhood cancer survivors who were off-treatment ≥5 years, aged ≥18 years and not involved in a long-term follow-up program were eligible. They were advised to visit their family doctor. The endpoints were numbers of participants, adherence of family doctors to the guidelines and satisfaction ratings.ResultsThe eligibility criteria were fulfilled by 108 survivors. Three family doctors and 15 survivors refused, 10 survivors were non-responders. Of the remaining 80 survivors, 73 survivors visited 72 family doctors. Sixty-nine (96%) family doctors returned data of whom 60 (83%) fully adhered to the recommended tests. The majority of survivors and family doctors were satisfied about the SCP.ConclusionsA (web-based) SCP for survivors and family doctors can serve as an effective communication vehicle to provide adequate shared care by the long-term follow-up clinic and family doctors.

Childhood cancer survivorship educational resources in North American pediatric hematology/oncology fellowship training programs: A survey study

Childhood cancer survivors require life-long care by clinicians with an understanding of the specific risks arising from the prior cancer and its therapy. We surveyed North American pediatric hematology/oncology training programs to evaluate their resources and capacity for educating medical trainees about survivorship. An Internet survey was sent to training program directors and long-term follow-up clinic (LTFU) directors at the 56 US and Canadian centers with pediatric hematology/oncology fellowship programs. Perceptions regarding barriers to and optimal methods of delivering survivorship education were compared among training program and LTFU clinic directors. Responses were received from 45/56 institutions of which 37/45 (82%) programs require that pediatric hematology/oncology fellows complete a mandatory rotation focused on survivorship. The rotation is 4 weeks or less in 21 programs. Most (36/45; 80%) offer didactic lectures on survivorship as part of their training curriculum, and these are considered mandatory for pediatric hematology/oncology fellows at 26/36 (72.2%). Only 10 programs (22%) provide training to medical specialty trainees other than pediatric hematology/oncology fellows. Respondents identified lack of time for trainees to spend learning about late effects as the most significant barrier to providing survivorship teaching. LTFU clinic directors were more likely than training program directors to identify lack of interest in survivorship among trainees and survivorship not being a formal or expected part of the fellowship training program as barriers. The results of this survey highlight the need to establish standard training requirements to promote the achievement of basic survivorship competencies by pediatric hematology/oncology fellows.

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.

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.

Health Status in Long-Term Survivors of Pediatric Craniopharyngiomas

Craniopharyngiomas are the third most common pediatric brain tumor and most common pediatric suprasellar tumor. Contemporary treatment of craniopharyngiomas uses limited surgery and radiation in an effort to minimize morbidity, but the long-term health status of patients treated in this fashion has not been well described. The purpose of this study was to analyze the health status of long-term survivors of pediatric craniopharyngioma treated primarily with radiation and conservative surgical resection. Medical records of all long-term survivors of craniopharyngioma treated at St. Jude Children's Research Hospital and then transferred to the long-term follow-up clinic were reviewed. The initial cohort comprised 55 patients. Of these, 51 (93%) were alive at the time of this analysis. The median age at diagnosis was 7.1 years (range, 1.2-17.6 years), and 29 (57%) were male. At the time of analysis, the median survival was 7.6 years (range, 5.0-21.3 years). Diagnosis and treatment included surgical biopsy, resection (n = 50), and radiation therapy (n=48). Only 1 patient received chemotherapy. Polyendocrinopathy was the most common morbidity, with hypothyroidism (96%), adrenocorticotropic hormone deficiency (84%), and diabetes insipidus (53%) occurring most frequently. Half of the patients were hypogonadal, and 33 (65%) were overweight or obese. The most common neurologic problems included shunt dependence (37%), seizures (28%), and headaches (39%). Psychological and educational deficits were also identified in a significant number of these individuals. Despite efforts to reduce morbidity in these patients, many survivors remain burdened with significant medical complications. In a small percentage of patients, complications may result in death even during extended remission of craniopharyngioma. Because of the broad spectrum or morbidities experienced, survivors of craniopharyngioma continue to benefit from multidisciplinary care.

Association of cyclophosphamide use with dental developmental defects and salivary gland dysfunction in recipients of childhood antineoplastic therapy

The aim of this study was to examine the effect of antineoplastic therapy on dental development and saliva function in recipients of childhood antineoplastic therapy. Patients attending the long-term follow-up clinic at Children's Hospital at Westmead, NSW, Australia, were included if they had received treatment prior to 16 years of age and were in remission for more than 5 years. A dental examination and saliva test were performed for each participant. Holtta's Defect Index (HDI) was used to assess tooth aplasia, microdontia, and root-crown ratio on an orthopantomogram (OPG). Multivariable-adjusted regression analyses were used to estimate the association of patient characteristics and treatment modalities with dental outcomes. One hundred six participants (61% male) were recruited (response rate = 88%). The mean HDI score was 24.7 ± 17.8. A cumulative dose of cyclophosphamide >7500 mg/m(2) increased the HDI score by 13.06 (P = .01). Recipients of cyclophosphamide also had significantly increased odds of exhibiting very low saliva flow (<0.7 mL/min) (odds ratio = 12.43; 95% confidence interval, 2.08-74.35; P = .006). Children and adolescents who received high doses of cyclophosphamide were at increased risk of dental disturbances. Cyclophosphamide recipients were also at greater risk of exhibiting very low saliva flow. This study applied the HDI to patients receiving all forms of antineoplastic treatment and highlights the dose-dependent relation between cumulative dose of cyclophosphamide and dental disturbances.

Psychosocial aspects of childhood cancer survivors

= Abstract = The majority of childhood cancer survivors and their families will be psychologically healthy, but may desire and benefit from preventive care. A significant portion of the survivor population will be psychosocially distressed in various aspects by their harsh experience of long cancer treatment, and may warrant professional intervention and treatment. Pedia- tricians should be aware of the late psychological effects that can occur a year or 2 after treatment, possibly in many aspects of a survivor's life. Not only the cancer diagnosis, but also treatments such as chemotherapy, irradiation, and surgical intervention may exert different long-term effects on the psychosocial outcomes of survivors. Pediatricians need to be more concerned with maintaining and improving the psychological health of this growing number of childhood cancer survivors through long-term follow-up clinics, community support, or self-help groups. Research on all of the psychosocial aspects of childhood cancer survivors is important to recognize the reality and problems they face in Korea. (Korean J Pediatr 2010;53:471-476)

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

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. A 16-question survey was mailed to member institutions of the Children's Oncology Group in the United States. Institutions were asked about the size of their brain tumor program, activities of the LTFU programs and perceived barriers to follow-up. One hundred forty-five (74%) of 197 institutions returned surveys. Care for patients <21 years old at diagnosis who are >2 years following completion of therapy was provided at a designated neuro-oncology LTFU clinic (31.2%), a general LTFU program for childhood cancer survivors (30.4%), or a general pediatric oncology program (29.7%). Institutions with a neuro-oncology LTFU clinic were more likely to use neuro-psychological testing following radiation therapy (P = 0.001), have longer duration of continued surveillance imaging (P = 0.02), use growth hormone replacement for medulloblastoma survivors (P < 0.001) and continue the use of growth hormone into adulthood (P = 0.05) than those with a general pediatric oncology program. Perceived barriers to care of brain tumor survivors included limited access and lack of insurance (32.1%), lack of funding or dedicated time for providers (22.9%), patients' uncertainty about need to follow-up (20.6%), and patients' desire to not be followed in a pediatric cancer program (12.2%). Considerable variation exists across institutions in the United States in the delivery of follow-up care for survivors of childhood brain tumors. We encourage additional investigation to better define and implement optimal follow-up care for childhood brain tumor survivors.

Comprehensive clinical follow-up of late effects in childhood cancer survivors shows the need for early and well-timed intervention

Background: Due to recent advances in treatment, nearly 80% of childhood cancer patients become long-term survivors. Studies on the late effects of survivors are under way worldwide. However, data on Asian survivors remain limited.Methods: Data on 241 survivors at the Long-term Follow-up Clinic in Severance Hospital, South Korea, were collected and late effects were confirmed by oncologists.Results: The median follow-up from diagnosis was 7.8 years. Late effects were identified in 59.8% of survivors and 23.2% had two or more late effects. Grade 3 or higher late effects were present in 10.8%. The most common late effects involved endocrine system (29.0%). Late effects were present in 95.7% of brain tumor survivors and 36.0% of Wilms' tumor survivors. Chemotherapy, hematopoietic stem-cell transplantation and radiotherapy were significant factors associated with the number and severity of late effects (P<0.05). Brain tumor survivors had more severe late effects (P<0.001), whereas Wilms' tumor survivors had fewer and milder late effects (P<0.05).Conclusion: The observation that over 50% of cancer survivors suffered from late effects during the short follow-up period and that a high frequency of endocrine late effects was present indicates the need for early and well-timed intervention of the survivors.

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.

Assessment of selection bias in clinic‐based populations of childhood cancer survivors: A report from the childhood cancer survivor study

It is not known to what extent prevalence estimates of late effects among childhood cancer survivors derived from clinic based samples represent the actual estimates that would be derived if the entire population of childhood cancer survivors was recruited and evaluated for a particular outcome. In a large retrospective cohort study of childhood cancer survivors, the Childhood Cancer Survivor Study (CCSS), the prevalence of chronic health conditions among participants who reported being seen in a cancer center or long-term follow-up clinic was compared to the prevalence of chronic conditions in the entire cohort. When compared to survivors who had no medical care in the previous 2 years, survivors accessing medical follow-up were significantly more likely to have chronic health conditions. Relative risks of reporting a chronic health condition were 1.4 (95% CI: 1.3-1.5) if seen in a cancer center or long-term follow-up clinic and 1.2 (95% CI: 1.1-1.3) if seen in a general medical care setting. Estimates derived from only those childhood cancer survivors who were seen in a cancer center or long-term follow-up clinic overestimate the prevalence of any chronic disease by 9.3% (95% CI: 7.0-11.6). Applying chronic condition prevalence estimates from a clinical population to the general population of childhood cancer survivors must be undertaken with caution. Survivorship research must maintain a high level of scientific rigor to ensure that results reported in the literature are interpreted within the appropriate context.

The effect of exercise counselling with feedback from a pedometer on fatigue in adult survivors of childhood cancer: a pilot study

ObjectiveThe aim of this study was to evaluate the results of home-based exercise counselling with feedback from a pedometer on fatigue in adult survivors of childhood cancer.PatientsAdult survivors of childhood cancer were recruited from the long-term follow-up clinic of the University Medical Centre Groningen, The Netherlands. A score of 70 mm on a visual analogue scale (scale, 0–100 mm) for fatigue was used as an inclusion criterion. Controls were recruited by the survivors among their healthy siblings or peers.MethodsDuring 10 weeks, the counselor encouraged the survivors to change their lifestyle and enhance daily physical activity such as walking, cycling, housekeeping and gardening. As a feedback to their physical activity, the daily number of steps of each survivor was measured by a pedometer and registered using an online step diary at the start of the programme and after 4 and 10 weeks. Fatigue was the primary outcome measure, assessed with the Checklist Individual Strength (CIS) at start (T0), 10 weeks (T10) and 36 weeks (T36). Thirty-three healthy age-matched control persons were asked to complete the CIS.ResultsOut of 486 cancer survivors, 453 were interested and were asked to complete the VAS to measure fatigue; 67 out of 254 respondents met the inclusion criteria, 21 refused, 46 were enrolled and eight dropped out during the study. The mean scores on the CIS in the survivors at T0 was 81.42 (SD ± 20.14) and at T10 62.62 (SD ± 20.68), which was a significant improvement (p < 0.0005). At T36, the end of the study, the mean CIS score was 63.67 (SD ± 23.12); this was a significant improvement compared with the mean CIS at the start (p < 0.0005). There was no significant difference in the mean CIS scores of the controls during the follow-up period.ConclusionThe stimulation of daily physical activity using exercise counselling and a pedometer over 10 weeks leads to a significant decrease in fatigue in adult survivors of childhood cancer, and this improvement lasts for at least 36 weeks.

Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer

Attendance at long-term follow-up clinic is necessary for survivors of childhood cancer to facilitate education about cancer-related health risks, early detection of treatment-related morbidity, and implementation of health-promoting interventions. Despite the need for continued care, barriers to clinic attendance exist. The purpose of this prospective study was to identify the demographic, medical, and logistic factors impacting clinic attendance and long-term follow-up care among survivors of childhood cancer. Adherence to clinic attendance was monitored among 941 long-term childhood cancer survivors scheduled for evaluation. Patients were classified as "attenders" or "non-attenders" based on the outcome of their first scheduled clinic appointment over a one year period. Social work staff contacted non-attenders by telephone to determine reasons for missed appointments. Nearly 15% of survivors were classified as non-attenders. Univariate findings revealed that older age, lower SES, being non-white, less medically insured, traveling by car, living shorter distance from clinic, having a scheduled social work consultation, and entering or exiting survivorship clinic were associated with clinic non-attendance (all p values < 0.05). The final multivariate model indicated that non-whites (OR = 1.88, 95% CI = 1.19-2.97), patients without insurance (OR = 2.36, 95% CI = 1.98-3.79), those traveling by car (OR = 12.74, 95% CI = 3.97-40.86), and those who have not experienced secondary cancer events (OR = 1.76, 95% CI = 0.94-3.28) were more likely to be non-attenders. Work or school conflicts were the primary reasons cited for missed appointments. Despite mechanisms designed to reduce financial burdens associated with attending survivorship clinic at our institution, demographic, medical, and logistic barriers exist which impact participation in long-term follow-up. IMPLICATIONS FOR CANCER SURVIVORS AND PROVIDERS: These results highlight the importance of developing tailored outreach strategies for survivors of childhood cancer at-risk for clinic non-attendance, particularly among underserved populations.

Disability and Health-related Quality of Life in Long-term Survivors of Cancer in Childhood in Brazil

There is limited experience with patient-reported measurements of health status and health-related quality of life (HRQL) in survivors of cancer in childhood in low-income countries. The purposes of this study were to collect such measurements in Brazil, to test hypotheses about differences among diagnostic groups, and to compare results with those from other countries. Survivors were eligible if diagnosed with cancer in childhood, attending a long-term follow-up clinic, cancer free, literate, and at least 13 years of age. Health status measurements were collected using a Brazilian Portuguese Health Utilities Index questionnaire. Questionnaire responses were converted to scores for morbidity in individual health attributes and for overall HRQL. More than one-third of the 138 consecutive survivors who participated reported some cognitive disability or pain. Approximately one-quarter reported problems with vision, speech, or emotion. Mean HRQL was similar (P>0.05) among countries for survivors of acute lymphoblastic leukemia and Hodgkin disease. The results support the hypotheses that Brazilian survivors of cancer in childhood experience a wide range of disabilities and impaired HRQL, are similar to those in other countries, and should be assessed in long-term follow-up clinics.

The Role of the Long-Term Follow-up Clinic in Discovering New Emerging Late Effects in Adult Survivors of Childhood Cancer

Our understanding of late effects in long-term survivors of childhood cancer is continually evolving as significant numbers of survivors are entering middle to later adulthood. Effects of conventional treatment on premature aging are being recognized, as are long-term effects of newer therapies. Clinicians in long-term follow-up clinics are in a unique position to monitor for recognized late effects and to be alert to signs and symptoms of late effects that have not been previously reported in the pediatric cancer literature. This article presents 2 young adult survivors who displayed subtle signs of impaired cerebral blood flow due to carotid artery stenosis many years after being treated with neck irradiation. When the first patient presented nearly a decade ago in the clinic with symptoms, premature carotid artery disease was not a radiation-related late effect that had been reported previously in survivors of childhood cancer. These cases are used to illustrate the key role of long-term follow-up clinics in identifying new and emerging treatment-related late effects and underscore the importance of lifetime surveillance and the need for collaboration between pediatric and adult health care providers.

Impact of care at a specialized long-term follow-up clinic on the acquisition of health knowledge by childhood cancer survivors

10054 Background: Knowledge deficits regarding diagnosis and treatment history exist, and could impair childhood cancer survivors’ ability to seek and receive risk-based care (RBC). Specialized long-term follow-up (LTFU) clinics provide RBC and pertinent education; however, the impact of clinic attendance on health knowledge deficits in survivors is unknown. This study was designed to determine if attendance at a specialized LTFU clinic improved survivors’ health knowledge. Methods: Health knowledge questionnaires were administered prior to a first LTFU clinic visit (baseline) and annually thereafter (subsequent). Accuracy of survivors’ self-reported diagnosis, treatment and perceived risks at baseline was compared with that reported at a subsequent clinic visit. Results: A total of 208 survivors completed questionnaires (54% female; 34% Caucasian, 45% Hispanic, 10% other; median age at diagnosis 7.6 years [range 0- 21.8]; age at survey 21.3 years [range 5.3–48.4]; primary diagnosis leukemia/lymphoma [70%], solid tumors [30%]). First-time LTFU clinic attendees (n=136) vs. those returning for a subsequent visit (n=72) demonstrated comparable accuracy in reporting their diagnosis with precision (69% vs. 72%) and reporting whether they received chemotherapy (97% vs. 96%), radiation (92% vs. 94%), and/or surgery (80% vs. 82%). Accuracy of reporting specifics of therapy (e.g., treatment with doxorubicin or anthracyclines) was low at baseline (32%) without significant subsequent improvement (36%). After adjusting for sex, race, education, primary diagnosis, age and year at diagnosis, age at survey, follow-up time, and therapeutic exposures, lack of awareness for perceived therapy-related risks was significantly lower in survivors returning for LTFU visits compared to baseline (Table). Conclusions: Attendance at a specialized LTFU clinic increased childhood cancer survivors’ awareness of therapy-related health risks and may facilitate RBC received by the survivors. Risk of lack of awareness for perceived health risks after one or more LTFU clinic visits* Body system at risk % lacking awareness of risk at baseline visit % lacking awareness of risk at subsequent visit Odds Ratio 95% Confidence Intervals Cardiac 47% 33% 0.23 0.10 - 0.51 Pulmonary 25% 5% 0.10 0.02 - 0.46 Sensory 52% 41% 0.31 0.14 - 0.69 Neurocognitive 39% 30% 0.37 0.16 - 0.87 Bone 55% 35% 0.18 0.08 - 0.41 * Adjusted for sex, race, education, primary diagnosis, year of diagnosis, age at diagnosis, age at survey, follow-up time, and therapeutic exposures. No significant financial relationships to disclose.

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.

Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study

Since 75% of children with cancer will become long-term survivors, late effects of treatment are an ever increasing issue for patients. Paediatric oncologists generally agree that cancer survivors should be followed up for the remainder of their lives, but they might not be the most suitable health-care providers to follow up survivors into late adulthood. We designed a 3-year study to assess whether shared-care by paediatric oncologists and family doctors in the long-term follow-up of survivors of childhood cancers is feasible, whether a shared-care model is compatible with collection of data needed for registration of late effects, and how a shared-care model is assessed by survivors and family doctors. In 2004 and 2005, adult survivors of childhood cancers were randomly chosen from eligible patients diagnosed with childhood cancer (excluding CNS tumours) or Langerhans-cell histiocytosis between January, 1968, and December, 1997, and recalled to the long-term follow-up (LTFU) clinic at the University Medical Centre Groningen, Groningen, Netherlands, where they underwent physical and clinical assessments by an on-site family doctor (visit 1). At this visit, assessments were done according to guidelines of the UK Children's Cancer Study Group Late Effects Group, and late effects were graded by use of Common Terminology Criteria for Adverse Events (version 3). Follow-up assessments were done 1 year later in 2005 and 2006 by local family doctors (visit 2), who were asked to return data to the LTFU clinic. At this visit, the local family doctors were asked to complete a three-item questionnaire and patients were asked to complete a seven-item questionnaire about their satisfaction with the shared-care model. At the next consultation, which was planned for the end of the study (visit 3), the on-site family doctor advised patients about future follow-up on the basis of their individual risk of late effects. Main endpoints were numbers of participants, satisfaction ratings, and proportions of local family doctors who returned data that they obtained at visit 2 to the LTFU clinic. 133 individuals were chosen at random from 210 enrolled adult survivors. 123 of 133 (92%) randomly selected survivors and 115 of 117 (98%) of their family doctors agreed to participate in the share-care programme. 103 of 115 (90%) family doctors returned data to the LTFU clinic at visit 2. 89 of 101 (88%) of survivors were satisfied with this shared-care model, as were 94 of 115 (82%) family doctors; 18 of 115 (16%) family doctors had no views either way; and three of 115 (3%) family doctors were dissatisfied. Shared-care by paediatric oncologists and family doctors is feasible for long-term follow-up of adult survivors of childhood cancers.