Increased prevalence of chronic fatigue among survivors of childhood cancers: a population-based study.

BACKGROUND: Fatigue is prevalent in adult cancer survivors but less studied in childhood cancer survivors. Aims were to assess fatigue levels, prevalence of chronic fatigue (CF) and the association of CF with health-related quality of life (HRQoL) in survivors of acute myeloid leukemia (AML), infratentorial astrocytoma (IA), and Wilms tumor (WT) in childhood. PROCEDURE: Seventy percent (398/567) of Nordic patients treated for AML, IA, and WT between 1985 and 2001 at age >1 year responded to a postal survey, encompassing the Fatigue Questionnaire and the Short Form 36 (SF-36). Participants were divided into two groups at time of study; younger (YG, 13-18 years) and older (OG, 19-34 years). Respondents (19-34 years, n = 763) from a Norwegian general population (GP) survey served as controls for the OG. RESULTS: The OG [mean age was 24 years (SD 3.3)] had higher fatigue levels compared to the YG and the GP, especially the females (P < 0.05). There was also a higher prevalence of CF in the OG than in the GP (14 vs. 6%, P < 0.001). Regardless of diagnosis, the OG with CF had poorer physical health (P < 0.05) on the SF-36 but better mental health (P < 0.05 and P = 0.001) relative to controls with CF. CONCLUSIONS: The prevalence of CF is higher among Nordic survivors of AML, IA, and WT than GP controls of similar age. CF is associated with impaired HRQoL in survivors. However, they reported better mental health than CF GP controls. This might indicate different underlying mechanisms of CF in the two populations.

Adult survivors of childhood malignant lymphoma are not aware of their risk of late effects.

PURPOSE: Survivors after malignant lymphoma are at high risk of late effects. In order to take full responsibility for their own health they need knowledge about their diagnosis, treatment and risk of late effects. We assessed such knowledge in adult survivors of childhood malignant lymphoma. MATERIAL AND METHODS: In 2007-2009 128 five-year survivors after childhood malignant lymphoma participated in a national cross-sectional questionnaire-based survey combined with clinical examination. [Males: 69, females: 59, treatment period 1970-2000, median age (range) at diagnosis: 14 years (0-18), at survey: 32 years (19-55), Hodgkin lymphoma (HL): 84, Non-Hodgkin lymphoma (NHL): 44]. Prior to the clinical examination a semi-structured interview on the survivors' knowledge was conducted by a study nurse. The individual survivors' responses were compared with his/her medical record. RESULTS: One hundred and twenty one reported their diagnosis correctly, seven reported that they had cancer, but could not specify malignant lymphoma. Thirty-three could not differentiate between HL and NHL. One hundred and twenty three reported their treatment modalities correctly (radiotherapy vs. chemotherapy vs. combined). Eighty-five (66%) were not aware of any risks for late effects. The remaining 43 listed at least one of the following late effects; infertility, heart-problems, impaired dental status, hypothyroidism, breast cancer, reduced muscle growth, fatigue and reduced memory or concentration. Thirty-seven survivors who provided additional comments reported that they had received some information about risk of late effects from their therapists. Age at diagnosis or educational level were not associated with knowledge about possible late effects while treatment period was. CONCLUSIONS: Norwegian long-term survivors of childhood malignant lymphomas are showing improved level of knowledge of their diagnosis and treatment modalities during the last decade. Still, independent of age at diagnosis and level of education, they are insufficiently aware of their risk of late effects.

Adverse Health Outcomes and Associations with Self-Reported General Health in Childhood Lymphoma Survivors.

BACKGROUND: The increased incidence of physical and psychosocial adverse health outcomes (AHOs) in childhood lymphoma survivors (CLSs) is well known, but these AHOs' association with self-reported general health is rarely described. AIM: We explored this association among long-term CLSs. METHODS: In 124 CLSs (Hodgkin: 81; non-Hodgkin: 43; median age: 33 years), physical AHOs were graded based on slightly modified common toxicity criteria for adverse effects (CTCAE)-4 recommendations (Grade 0-3). Psychosocial AHOs (pain, work inability, fatigue, and mental distress) were mainly assessed by validated patient-reported questionnaires (Grade 0-2). The results were related to contemporary self-reported general health. Statistical significance: p < 0.01. RESULTS: At least one physical AHO was found in 120 CLSs, being of Grades 1, 2, and 3, respectively, in 43, 43, and 34 survivors. The prevalence of psychosocial AHOs (Grades 1 or 2) was 63%, being Grade 2 in 62 CLSs. The CLSs described their general health as significantly reduced compared with controls, with the greatest reduction for survivors in whom physical AHOs were combined with moderate to severe psychosocial AHOs. CONCLUSION: Psychosocial more than physical AHOs impact on CLSs' current self-reported general health. Clinicians responsible for follow-up of CLSs should be aware of the strong reduction of contemporary general health by Grade 2 psychosocial AHOs. The study challenges the use of the physician-assessed CTCAE-4 categories in long-term cancer survivors and emphasizes the need to develop instruments, which reflect both physical and psychosocial AHOs in these individuals.

Emotional Functioning and School Contentment in Adolescent Survivors of Acute Myeloid Leukemia, Infratentorial Astrocytoma, and Wilms Tumor.

Purpose: Cancer in childhood may disrupt normal developmental processes and cause psychosocial problems in adolescent survivors of childhood cancers (ACCSs). Previous studies report inconsistent findings. Study aims were to assess subjective well-being (SWB), psychological distress, and school contentment in survivors of three dissimilar childhood cancers. Patients and methods: Nordic patients treated for acute myeloid leukemia (AML), infratentorial astrocytoma (IA), and Wilms tumor (WT) in childhood from 1985 to 2001, aged ≥1 year at diagnosis, and aged 13-18 years at the time of study were eligible for this questionnaire-based survey that included items on SWB, psychological distress, school contentment, self-esteem, and personality traits; 65% (151/231) responded. An age-equivalent group from a Norwegian health survey (n=7910) served as controls. Results: The median age of ACCSs was 16 years; 52% were males. ACCSs reported better SWB (p=0.004) and self-esteem (p<0.001). They had fewer social problems in school (p=0.004) and their school contentment tended to be higher than controls. SWB and school contentment were positively influenced by self-esteem. However, ACCSs reported higher levels of psychological distress (p=0.002), mostly attributable to general worrying. No significant differences in outcomes were found across diagnoses, and time since diagnosis did not significantly affect the results. Conclusion: The overall emotional functioning of ACCSs was good, possibly due to changes in their perception of well-being after having survived a life-threatening disease. However, they seemed more worried than their peers. This may cause an additional strain at a vulnerable period in life.

Social outcomes in young adult survivors of low incidence childhood cancers.

INTRODUCTION: The intensity and duration of childhood cancer treatment may disrupt psychosocial development and thereby cause difficulties in transition into adulthood. The study objective was to assess social outcomes in early adulthood after successful treatment for childhood acute myeloid leukemia (AML), Wilms tumor (WT) and infratentorial astrocytoma (IA). METHODS: Nordic patients treated for AML, WT and IA from 1985 to 2001 identified from a database administered by NOPHO (Nordic Society of Paediatric Haematology and Oncology) were invited to participate in a postal survey. All cancer-free survivors treated at age >1 year who were >19 years at time of study were eligible. Seventy-four percent; 247/335 responded. An age-equivalent group (N = 1,814) from a Norwegian Census Study served as controls. RESULTS: Mean age of survivors was 23 years (range 19-34), 55% females. The proportion with academic education (>/=4 years) was similar in survivors and controls (28 vs. 32%). Fifty-nine percent of survivors were employed compared to 77% among controls (p < .01). More survivors were recipients of social benefits (6.7 vs. 3.1%, p < .01). There were no differences in marital status but parenthood was more common among controls (37 vs. 27%, p = .01). Controls lived longer in their parental homes (p = .01). Cancer type or treatment intensity had no statistically significant impact on results, except for parenthood. CONCLUSIONS AND IMPLICATIONS FOR CANCER SURVIVORS: The study revealed important differences in social outcomes between survivors and controls early in adult life. Specific difficulties pertain to studying social status in early adulthood because of the natural transition characteristics for this age group. Therefore, longer follow-up is warranted.