Psychological Status in Childhood Cancer Survivors: A Report From the Childhood Cancer Survivor Study

Abstract

Psychological quality of life (QOL), health-related QOL (HRQOL), and life satisfaction outcomes and their associated risk factors are reviewed for the large cohort of survivors and siblings in the Childhood Cancer Survivor Study (CCSS). This review includes previously published manuscripts that used CCSS data focused on psychological outcome measures, including the Brief Symptom Inventory (BSI-18), the Medical Outcomes Survey Short Form-36 (SF-36), the Cantril Ladder of Life, and other self-report questionnaires. Comparisons and contrasts are made between siblings and survivors, and to normative data when available, in light of demographic/health information and abstracted data from the medical record. These studies demonstrate that a significant proportion of survivors report more symptoms of global distress and poorer physical, but not emotional, domains of HRQOL. Other than brain tumor survivors, most survivors report both good present and expected future life satisfaction. Risk factors for psychological distress and poor HRQOL are female sex, lower educational attainment, unmarried status, annual household income less than $20,000, unemployment, lack of health insurance, presence of a major medical condition, and treatment with cranial radiation and/or surgery. Cranial irradiation impacted neurocognitive outcomes, especially in brain tumor survivors. Psychological distress also predicted poor health behaviors, including smoking, alcohol use, fatigue, and altered sleep. Psychological distress and pain predicted use of complementary and alternative medicine. Overall, most survivors are psychologically healthy and report satisfaction with their lives. However, certain groups of childhood cancer survivors are at high risk for psychological distress, neurocognitive dysfunction, and poor HRQOL, especially in physical domains. These findings suggest targeting interventions for groups at highest risk for adverse outcomes and examining the positive growth that remains despite the trauma of childhood cancer.

Quality of life in children and adolescents surviving cancer

“…Our findings of lower QoL reported by parents are consistent with a number of previous studies and reviews of QoL studies in childhood cancer survivors using either the proxy or self-report (Grant et al, 2006;Speechley et al, 2006) as well as three other studies in older age groups, using other outcome measures as well as other control groups (i.e. siblings) (Stam et al, 2006;Reinfjell et al, 2009;Zeltzer et al, 2009). However, most studies found that on the whole, survivors of childhood cancer fare the same or have a good QoL (Langeveld et al, 2002(Langeveld et al, , 2004Zebrack and Chesler, 2002;Shankar et al, 2005;Zeltzer et al, 2008Zeltzer et al, , 2009Servitzoglou et al, 2009;Sundberg et al, 2009) and function well psychologically (Gray et al, 1992;Elkin et al, 1997;Noll et al, 1997;Patenaude and Kupst, 2005;Meyerowitz et al, 2008).…”

“…siblings) (Stam et al, 2006;Reinfjell et al, 2009;Zeltzer et al, 2009). However, most studies found that on the whole, survivors of childhood cancer fare the same or have a good QoL (Langeveld et al, 2002(Langeveld et al, , 2004Zebrack and Chesler, 2002;Shankar et al, 2005;Zeltzer et al, 2008Zeltzer et al, , 2009Servitzoglou et al, 2009;Sundberg et al, 2009) and function well psychologically (Gray et al, 1992;Elkin et al, 1997;Noll et al, 1997;Patenaude and Kupst, 2005;Meyerowitz et al, 2008). Yet, only a few studies had reported results by both parent proxy and adolescent self-report, compared with controls.…”

“…However, we cannot rule out the consequences of long-term psychological strain because of the effects of the cancer disease and its treatment. In various studies suggesting that childhood cancer survivors function well psychologically (Zeltzer et al, 2009;Gray et al, 1992;Langeveld et al, 2002) despite a seemingly traumatic childhood experience, it was unclear if survivors were suffering from late effects or not. Taken into consideration, these findings may support the suggestion of a biological and psychological source for a poorer QoL experience among children who have survived cancer.…”

“…While a number of studies have reported adverse outcomes (Grant et al, 2006;Speechley et al, 2006;Stam et al, 2006;Reinfjell et al, 2009;Gurney et al, 2009;Nathan et al, 2009;Hudson et al, 2003;Mulhern et al, 2004;Oeffinger et al, 2008), others have concluded that QoL (Langeveld et al, 2002(Langeveld et al, , 2004Zebrack and Chesler, 2002;Shankar et al, 2005;Zeltzer et al, 2008Zeltzer et al, , 2009Servitzoglou et al, 2009;Sundberg et al, 2009) and psychosocial adjustment (Gray et al, 1992;Elkin et al, 1997;Noll et al, 1997;Patenaude and Kupst, 2005;Meyerowitz et al, 2008) are satisfactory for the majority of long-term childhood cancer survivors. Finally, a few studies have found that the prevalence of depression in survivors of childhood cancer equal that of healthy controls (Gray et al, 1992;Zebrack and Zeltzer, 2003).…”

Self-reported endocrine late effects in adults treated for brain tumours, Hodgkin and non-Hodgkin lymphoma: a registry based study in Northern Germany

“…These observations confirm the results of several previously published international studies and support the need for regular psychological/psychiatric evaluation of cancer patients and cancer survivors (13,52,53,54).…”