Late Effects Of Childhood Cancer Research Articles

A diagnostic classifier for pediatric chronic graft-versus-host disease: results of the ABLE/PBMTC 1202 study.

The National Institutes of Health Consensus criteria for chronic graft-versus-host disease (cGVHD) diagnosis can be challenging to apply in children, making pediatric cGVHD diagnosis difficult. We aimed to identify diagnostic pediatric cGVHD biomarkers that would complement the current clinical criteria and help differentiate cGVHD from non-cGVHD. The Applied Biomarkers of Late Effects of Childhood Cancer (ABLE) study, open at 27 transplant centers, prospectively evaluated 302 pediatric patients after hematopoietic cell transplant (234 evaluable). Forty-four patients developed cGVHD. Mixed and fixed effect regression analyses were performed on diagnostic cGVHD onset blood samples for cellular and plasma biomarkers, with individual markers declared relevant if they met 3 criteria: an effect ratio ≥1.3 or ≤0.75; an area under the curve (AUC) of ≥0.60; and a P value <5.814× 10-4 (Bonferroni correction) (mixed effect) or <.05 (fixed effect). To address the complexity of cGVHD diagnosis in children, we built a machine learning-based classifier that combined multiple cellular and plasma biomarkers with clinical factors. Decreases in regulatory natural killer cells, naïve CD4 T helper cells, and naïve regulatory T cells, and elevated levels of CXCL9, CXCL10, CXCL11, ST2, ICAM-1, and soluble CD13 (sCD13) characterize the onset of cGVHD. Evaluation of the time dependence revealed that sCD13, ST2, and ICAM-1 levels varied with the timing of cGVHD onset. The cGVHD diagnostic classifier achieved an AUC of 0.89, with a positive predictive value of 82% and a negative predictive value of 80% for diagnosing cGVHD. Our polyomic approach to building a diagnostic classifier could help improve the diagnosis of cGVHD in children but requires validation in future prospective studies. This trial was registered at www.clinicaltrials.gov as #NCT02067832.

Elevated ADA2 Enzyme Activity at the Onset of Chronic Graft-versus-Host Disease in Children

Adenosinergic signaling has potent, context-specific effects on immune cells, particularly on the dysregulation of lymphocytes. This in turn may have a role in immune activation and loss of tolerance in such diseases as chronic graft-versus-host disease (chronic GVHD). We assessed whether changes in the enzymatic activity of adenosine deaminase 2 (ADA2), an enzyme that depletes adenosine in the extracellular space via conversion to inosine, may be associated with the onset of chronic GVHD. ADA2-specific enzyme activity was measured in plasma samples from 230 pediatric hematopoietic stem cell transplantation (HSCT) recipients enrolled on the Applied Biomarkers of Late Effects of Childhood Cancer (ABLE)/Pediatric Blood and Marrow Transplant Consortium (PBMTC) 1202 study and compared between patients developing chronic GVHD and those not developing chronic GVHD within 12 months of transplantation. ADA2 and its relationships with 219 previously measured plasma-soluble proteins, metabolites, and immune cell populations were evaluated as well. Plasma ADA2 enzyme activity was significantly elevated in pediatric HSCT recipients at the onset of chronic GVHD compared to patients without chronic GVHD and was not associated with prior history of acute GVHD or generalized inflammation as measured by C-reactive protein concentration. ADA2-specific enzyme activity met our criteria as a potential diagnostic biomarker of chronic GVHD (effect ratio ≥1.30 or ≤.75; area under the receiver operating characteristic curve ≥.60; P < .05) and was positively associated with markers of immune activation previously identified in pediatric chronic GVHD patients. These results support the potential of ADA2 enzyme activity, in combination with other biomarkers and subject to future validation, to aid the diagnosis of chronic GVHD in children post-HSCT.

The effect of surveillance for differentiated thyroid carcinoma in childhood cancer survivors on survival rates: a decision-tree-based analysis

Childhood cancer survivors (CCS) who received radiation therapy exposing the thyroid gland are at increased risk of developing differentiated thyroid cancer (DTC). Therefore, the International Guideline Harmonization Group (IGHG) on late effects of childhood cancer therefore recommends surveillance. It is unclear whether surveillance reduces mortality. The aim of this study was to compare four strategies for DTC surveillance in CCS with the aim of reducing mortality: Strategy-1, no surveillance; Strategy-2, ultrasound alone; Strategy-3, ultrasound followed by fine-needle biopsy (FNB); Strategy-4, palpation followed by ultrasound and FNB. A decision tree was formulated with 10-year thyroid cancer-specific survival as the endpoint, based on data extracted from literature. It was calculated that 12.6% of CCS will develop DTC. Using Strategy-1, all CCS with DTC would erroneously not be operated upon, but no CCS would have unnecessary surgery. With Strategy-2, all CCS with and 55.6% of CCS without DTC would be operated. Using Strategy-3, 11.1% of CCS with DTC would be correctly operated upon, 11.2% without DTC would be operated upon and 1.5% with DTC would not be operated upon. With Strategy-4, these percentages would be 6.8, 3.9 and 5.8%, respectively. Median 10-year survival rates would be equal across strategies (0.997). Different surveillance strategies for DTC in CCS all result in the same high DTC survival. Therefore, the indication for surveillance may lie in a reduction of surgery-related morbidity rather than DTC-related mortality. In accordance with the IGHG guidelines, the precise strategy should be decided upon in a process of shared decision-making.

Late health effects and changes in lifestyle factors after cancer in childhood with and without subsequent second primary cancers - the KiKme case-control study.

Improved treatments for childhood cancer result in a growing number of long-term childhood cancer survivors (CCS). The diagnosis and the prevalence of comorbidities may, however, influence their lifestyle later in life. Nonetheless, little is known about differences in late effects between CCS of a first primary neoplasm (FPN) in childhood and subsequent second primary neoplasms (SPN) and their impact on lifestyle. Therefore, we aim to investigate associations between the occurrence of FPN or SPN and various diseases and lifestyle in the later life of CCS. CCS of SPN (n=101) or FPN (n=340) and cancer-free controls (n=150) were matched by age and sex, and CCS additionally by year and entity of FPN. All participants completed a self-administered questionnaire on anthropometric and socio-economic factors, medical history, health status, and lifestyle. Mean time between FPN diagnosis and interview was 27.3 years for SPN and 26.2 years for FPN CCS. To confirm results from others and to generate new hypotheses on late effects of childhood cancer as well as CCS´ lifestyles, generalized linear mixed models were applied. CCS were found to suffer more likely from diseases compared to cancer-free controls. In detail, associations with cancer status were observed for hypercholesterinemia and thyroid diseases. Moreover, CCS were more likely to take regular medication compared to controls. A similar association was observed for CCS of SPN compared to CCS of FPN. In contrast to controls, CCS rarely exercise more than 5 hours per week, consumed fewer soft and alcoholic drinks, and were less likely to be current, former, or passive smokers. Additionally, they were less likely overweight or obese. All other exploratory analyses performed on cardiovascular, chronic lung, inflammatory bone, allergic, and infectious diseases, as well as on a calculated health-score revealed no association with tumor status. CCS were more affected by pathologic conditions and may consequently take more medication, particularly among CCS of SPN. The observed higher disease burden is likely related to the received cancer therapy. To reduce the burden of long-term adverse health effects in CCS, improving cancer therapies should therefore be in focus of research in this area.

Longitudinal associations between psychosocial morbidity, chronic health conditions, quality of life, and mortality in adult survivors of childhood cancer.

e24147 Background: Psychosocial late effects of childhood cancer are often studied in isolation despite high rates of co-morbidity. We examined patterns of psychosocial morbidity and their associations with subsequent chronic health conditions, quality of life, and mortality in adult survivors of childhood cancer. Methods: St. Jude Lifetime Cohort participants (n = 4,009; median[range] 30.6[18.0-64.8] years of age; 20.4[5.5-52.3] years from diagnosis; 51% female) completed baseline questionnaires. Latent class analysis characterized psychosocial morbidity using 18 individual indicators across four domains: functional independence (e.g., independent living), emotional health (e.g., depressive symptoms), health behaviors (e.g., alcohol use), and socioeconomic status (e.g., employment). Generalized linear models, adjusted for age, sex, and race/ethnicity, examined longitudinal associations between class membership at cohort entry and persistent/new onset Grade 2-4 chronic health conditions from baseline to follow-up (n = 2,355, median f/u = 5.8 years). In separate adjusted models, associations with persistently poor/worsening quality of life at follow-up [SF-36 t-score &lt;40] (n = 2,276, median f/u = 5.7 years) were examined. Cox Proportional models were used to examine associations between class membership and all-cause mortality adjusting for age, sex, and race/ethnicity. Results: Four latent classes were identified: (1) functional non-independence (21%); (2) risky health behaviors (15%); (3) poor emotional health (14%); and (4) low psychosocial morbidity (49%). Survivors in the functional non-independence and poor emotional health classes had increased risk of persistent/new onset Grade 2-4 cardiac (RR = 1.23, 95% CI 1.09-1.40; RR = 1.16, 95% CI 1.04-1.31), pulmonary (RR = 1.28, 95% CI 1.14-1.42, RR = 1.15; 95% CI 1.02-1.29), neurologic (RR = 2.22, 95% CI 1.93-2.56; RR = 1.97, 95% CI 1.70-2.28), and musculoskeletal conditions (RR = 1.85, 95% CI 1.58-2.15; RR = 1.46, 95% CI 1.21-1.75) compared to low psychosocial morbidity. Each class of psychosocial morbidity was significantly associated with persistently poor/worsening quality of life from baseline to follow-up compared to low psychosocial morbidity. Compared to the low psychosocial morbidity class, functional non-independence (HR = 3.37, 95% CI 2.43-4.67), risky health behaviors (HR = 1.77, 95% CI 1.21-2.59), and poor emotional health (HR = 2.70, 95% CI 1.89-3.84) classes were associated with increased risk of all-cause mortality. Conclusions: Baseline psychosocial morbidities experienced by survivors of childhood cancer are associated with persistent and new onset chronic health conditions, poor/worsening quality of life, and mortality. Interventions targeting psychosocial late effects may mitigate adverse health outcomes in survivors.

Late effects of childhood cancer recorded at a single outpatient clinic over the course of one year: implications for the follow-up care.

The paper provides a descriptive analysis of medical data and selected patient-reported outcomes from a group of 133 survivors of childhood cancer recruited at St. Anne's University Hospital in Brno, Czech Republic, over the course of one year. The participants were 18-53 years old (mean age 27.9 years) and had been diagnosed with childhood cancer in the period 1979-2016. Treatment data and data on relevant health outcomes were extracted from the medical records and categorized. Patient-reported outcomes were measured using the clinic's questionnaires completed by survivors prior to the medical examination. The most frequent adverse health outcomes in the study were dyslipidemia (50%) and overweight, obesity, and even morbid obesity (45%, 15%, and 1.5%, respectively). Endocrinopathies were observed in more than one-third (35.3%) of the survivors, followed by nephropathy (33.8%). Cardiovascular abnormalities were found in 9.7% of the survivors and fertility impairment in 9%. 38% of the survivors reported chronic fatigue and one-half (51%) reported pain. 20% of the cohort face mobility impairment. A remarkably high percentage of the survivors (70%) communicated some level of mental health issues. Moderate to severe anxiety and/or depression was reported by 25% of the survivors. 40% of the survivors experienced strong fears of disease recurrence, another 40% reported mild or moderate fears. Fear of late effects was communicated by 83% of the survivors, with 38% experiencing high levels of concerns. Only 8% of the survivors had no adverse health outcome. The rate of somatic and mental health outcomes identified in our sample is high. Some of the most frequent outcomes are mutually interconnected and modifiable, which highlights the need for patient education on a healthy lifestyle. There is also a clear need for improved psychological support for childhood cancer survivors to mitigate unnecessary anxieties resulting from unsubstantiated health concerns. Dissemination of personalized and positive messages should be part of routine follow-up care.

European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

BackgroundLong-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. MethodsThe PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. ResultsTwenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). ConclusionsThe PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020–funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.

Perceived cancer-related pain and fatigue, information needs, and fear of cancer recurrence among adult survivors of childhood cancer

ObjectivePain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence. MethodsWe surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion). ResultsMany survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p’s<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs. ConclusionSurvivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence. Practice ImplicationsLong-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence.

Psychological Symptoms, Social Outcomes, Socioeconomic Attainment, and Health Behaviors Among Survivors of Childhood Cancer: Current State of the Literature.

The diagnosis, treatment, and medical late effects of childhood cancer may alter the psychosocial trajectory of survivors across their life course. This review of the literature focuses on mental health symptoms, achievement of social milestones, socioeconomic attainment, and risky health behaviors in survivors of childhood cancer. Results suggest that although most survivors are psychologically well adjusted, survivors are at risk for anxiety and depression compared with siblings. Although the absolute risk of suicide ideation and post-traumatic stress symptoms is low, adult survivors are at increased risk compared with controls. Moreover, young adult survivors are at risk for delayed psychosexual development, lower rates of marriage or cohabitation, and nonindependent living. Survivors' socioeconomic attainment also is reduced, with fewer survivors graduating college and gaining full-time employment. Despite risk for late health-related complications, survivors of childhood cancer generally engage in risky health behaviors at rates similar to or only slightly lower than siblings and peers. CNS tumors and CNS-directed therapies are salient risk factors for poor psychosocial outcomes. In addition, physical health morbidities resulting from cancer-directed therapies are associated with worse psychosocial functioning. Several studies support the effectiveness of cognitive and behavioral interventions to treat psychological symptoms as well as to modify health behaviors. Additional randomized controlled trials are needed to evaluate the efficacy and long-term outcomes of intervention efforts. Future research should focus on the identification of potential genetic predispositions related to psychosocial outcomes to provide opportunities for preventive interventions among survivors of childhood cancer.

Childhood Cancer and Brain Tumor Late Effects: Relationships with Family Burden and Survivor Psychological Outcomes.

This study examines illness-specific family burden as a mediator of the association between late effects of childhood cancer and survivors' emotional and behavioral outcomes. Childhood cancer survivors (n = 65; ages 10-17) two or more years off-treatment completed measures assessing internalizing and PTSD symptoms. Parents reported on illness-specific family burden, late effects severity, and survivor internalizing/externalizing problems. Providers documented the number of late effects. Illness-specific family burden was correlated with provider-reported late effects (r = .29, p < .05) and parent report of severe late effects (r = .56, p < .01). Results supported an indirect effect of illness-specific family burden on number of late effects and parent-reported survivor internalizing problems, p < .05. Indirect effects were not found in models predicting PTSD and externalizing problems. Illness-specific family burden is an important intervention target for reducing internalizing problems in childhood cancer survivors with late effects.

Prevalence of cardiovascular late sequelae in long-term survivors of childhood cancer: A systematic review and meta-analysis.

Cardiovascular diseases are well-known late effects of childhood cancer and research on these late effects is a highly important emerging field. We conducted a systematic review with a meta-analysis to give an overview of the current evidence and the prevalence of late cardiovascular events. We included publications in which the study populations were children and adolescents who survived cancer. Outcome was defined as all cardiovascular clinical and subclinical endpoints or diagnoses appearing at least one year after cancer diagnosis. A systematic overview is presented for all included studies. A quantitative meta-analysis was conducted for hypertension and stroke. Sixty-four papers were included in the review. The age range at cancer diagnosis was 0-24 years; age at the end of follow-up ranged from 7 to 71 years. Prevalence of cardiovascular late effects varied from 0% for stroke up to 70% for subclinical hypertension. Large heterogeneity was found regarding study size, study design, definition of endpoints, and investigation/examination method. The weighted average prevalence was 19.7% for hypertension and 2.3% for stroke. As no specific results for gender, cancer therapy, or age at cancer diagnosis were present in most papers, a detailed comparison and pooled analysis was difficult. This review showed the vast range of cardiovascular late effects after childhood or adolescent cancer therapy. The differences between the papers prevented drawing a conclusive picture of the prevalence of cardiovascular late effects. Large cohort studies and better reporting are needed to improve the knowledge on this topic.

Memories of Parent Behaviors and Adult Attachment in Childhood Cancer Survivors.

Childhood cancer is stressful for the entire family. Preoccupation and anxiety surrounding the child's illness may result in parents of children with cancer being overprotective or less emotionally responsive toward their children. Such parenting in response to a negative life event like childhood cancer may cause survivors to be more insecurely attached than healthy peers, which could have downstream effects on survivors' romantic relationships later in life. Therefore, we examined survivors' perspectives on parent behaviors, adult attachment, and marital status among adult survivors of childhood cancer relative to controls. One hundred forty-nine young adult survivors and 149 matched controls (Mage = 28, range 20-40) indicated their relationship status (single vs. partnered) and completed standardized questionnaires assessing memories of upbringing (warmth, overprotection, rejection) and adult attachment (avoidance, anxiety). Adult survivors of childhood cancer remembered mothers and fathers as emotionally warmer (d = 0.53/0.30), and mothers as less rejecting than controls (d = 0.30). Adult attachment was overall similar between survivors and controls, but partnered survivors reported particularly low attachment-related anxiety. Childhood cancer was related to higher mother and father warmth, which were associated with lower attachment-related avoidance and in turn with a greater likelihood of being in a relationship. Adult childhood cancer survivors did not remember their parents as overprotective, but reported more positive parenting relative to controls; and similar adult attachment and relationship status. The results were unexpected, but offer novel insights for future prospective studies, which are necessary to better understand psychosocial late effects of childhood cancer.

Sexual function in male long‐term survivors of childhood acute lymphoblastic leukemia

Infertility, poor semen quality, and gonadal dysfunction are well recognized long-term sequelae in male survivors of childhood acute lymphoblastic leukemia (ALL). However, few studies have investigated adult sexual functioning in these survivors. The authors studied 52 male survivors of childhood ALL at a median age of 28.5 years (range, 25-38 years) ≥ 10 years after diagnosis. In addition, 56 men without a history of cancer were recruited for an age-matched control group. The participants completed the Derogatis Interview for Sexual Functioning self-report. To analyze predictive factors for sexual dysfunction, variables assessing sociodemographic background, antileukemia treatment, testicular size, laboratory variables from current serum and semen samples, self-reported depressive symptoms, and self-reported physical functioning were included in multiple regression analyses. ALL survivors had significantly poorer sexual functioning, as measured by the Derogatis Interview for Sexual Functioning self-report, compared with the control group. Survivors had a similar frequency of sexual fantasies, autoerotic acts, and full erection during these activities as the control group, but they had less frequent sexual activity with a sexual partner, poorer self-rated orgasms, and lower satisfaction with their sex life. Predictive factors for poorer sexual functioning were depressive symptoms, the absence of a relationship, and, to a lesser extent, testicular size as an indication of gonadal damage from childhood antileukemia therapy. Older survivors experienced a deeper decline in sexual functioning compared with men in the control group. Decline in sexual functioning at an early adult age can be regarded as 1 of the late effects of childhood cancer. Monitoring these survivors' sexual health is indicated. Cancer 2016;122:2268-76. © 2016 American Cancer Society.

Abstract IA23: The overall health burden on aging survivors of childhood cancer

Abstract IA23: The overall health burden on aging survivors of childhood cancer

Fertility studies in female childhood cancer survivors: selecting appropriate comparison groups

Little information is available on the use of appropriate comparison groups for studies investigating late effects of childhood cancer. Two comparison groups in a nationwide study on reproductive function and ovarian reserve in female childhood cancer survivors were recruited (The Dutch Childhood Oncology Group Long-Term Effects After Childhood Cancer Cohort Study). Experiences of this process are reported. Two types of comparison groups were used: sisters of participating survivors and controls from the general population. A total of 352 out of 580 (61%) of the participating survivors who had a sister gave permission to invite them for the study. The participation rate of sisters was much higher than control participants from the general population (74% versus 21%, respectively), whereas considerably more effort was involved in recruiting controls from the general population. Participants in this group were significantly older and more highly educated than sister controls (P < 0.001 for both groups). No significant differences were observed between both types of comparison groups in several fertility-related characteristics, suggesting minimal bias owing to selective participation. Researchers setting up a study to investigate late effects among survivors of childhood cancer should carefully consider the advantages and disadvantages of using various types of comparison groups.

Developing international consensus for late effects screening and guidance

Long-term follow-up (LTFU) of childhood cancer survivors is important in view of their high frequency of chronic medical problems, many of which may be serious, disabling or life-threatening. Several LTFU guidelines for the care of survivors have been developed by different national groups but provide varied recommendations with areas of both agreement and of disagreement. This diversity has generated uncertainty about the ideal nature and content of LTFU. The EU-funded PanCareSurFup project is developing pan-European guidelines for the prevention, early detection and treatment of physical or psychosocial late effects of childhood cancer and its treatment, as well as the organization of LTFU care including age-appropriate transitional care as survivors approach adulthood and optimal health-promotion advice for individual survivors and their families. The International Late Effects of Childhood Cancer Guideline Harmonization Group aims to achieve consensus concerning clinical practice guidelines for LTFU of major late effects in survivors. The overall aim is to produce harmonized recommendations of value to all the participating countries despite their potentially disparate needs and healthcare settings. These initiatives seek to standardize and increase the efficiency of LTFU care and improve long-term health outcomes and quality of life in survivors.

SP-0023: Large cohort studies on late effects of childhood cancer

SP-0023: Large cohort studies on late effects of childhood cancer

Physical Activity Prescription for Childhood Cancer Survivors

Physical activity can play a vital role in the treatment and prevention of many of the long-term effects of childhood cancer and cancer therapy. Specifically, physical activity may attenuate the long-term risk for adverse cardiovascular effects, low bone density, obesity, and poor quality-of-life measures. Physicians caring for long-term survivors of cancer should be prepared to evaluate the survivor's risk for long-term effects and provide accurate advice regarding the prescription of physical activity for the management and prevention of these problems. Knowing when physical activity prescription can help mitigate the late effects of childhood cancer and cancer therapy, and the barriers to physical activity for survivors, will help physicians provide quality care to childhood cancer survivors.

A systematic review of studies on psychosocial late effects of childhood cancer: structures of society and methodological pitfalls may challenge the conclusions.

High survival rates after childhood cancer raise attention to possible psychosocial late effects. We focus on predictors of psychosocial outcomes based on diagnosis, treatment, demography, somatic disease, and methodological problems. Overall, survivors evaluate their health-related quality of life to be normal or even better than controls, although virtually all diagnostic subgroups report psychosocial impairment. Central nervous system tumor survivors have significant psychosocial problems. Negative outcomes were associated with cranial radiation therapy, female gender, and young age at diagnosis. Significant methodological problems hamper current knowledge. Systematic registration of psychosocial and somatic problems at diagnosis and prospectively through protocols is needed.

Health information needs of childhood cancer survivors and their family

Knowledge about past disease, treatment, and possible late effects has previously been shown to be low in survivors of childhood cancer and their relatives. This study investigated the information needs of childhood cancer survivors and their parents and explored possible determinants for differences in information need and health-related Internet use. Childhood cancer survivors or their parents were contacted to complete a questionnaire about their characteristics, Internet use and requirements/expectations of a website on late effects (N = 160). One-hundred forty-five questionnaires (90.6%) were returned. Of the 69 respondents (49.3%) who had visited a late effects outpatient clinic prior to the survey, 20 (29.0%) had questions left after the consult. The large majority of the population had home access to Internet and 71 respondents (49.3%) used Internet for medical questions. Only 15 respondents (10.5%) used Internet to look for information on late effects of childhood cancer and only 4 survivors found what they were looking for. Main information items requested were information about recognizing late effects, personalized information on late effects treatment and information on self-care. Only six respondents (4.2%) stated they would not visit a late effects website if it would be available. The need for late effects information showed to be of high priority by the majority of respondents, as was their interest in visiting a late effects website. In the development of a late effects website, attention should be given to patient information tailored to the personal situation of the website's users.