Health-related quality of life and psychological distress in young adult survivors of childhood cancer and their association with treatment, education, and demographic factors

Abstract

PurposeThis study investigated health-related quality of life (HRQOL) and psychological distress among young adult (YA) survivors of childhood cancer and the association of these measures with treatment, education, and demographic factors ≥ 5 years post diagnosis.MethodsParticipants included cancer survivors (n = 91) recruited through the Cancer Registry of Norway (CRN) and healthy controls (n = 223) recruited from a student population. All participants completed self-report questionnaires, and the Pediatric Quality of Life Inventory (PedsQL™) 4.0 and the Hopkins Symptom Checklist-10 (HSCL-10) as a measure of HRQOL and distress, respectively.ResultsSurvivors reported HRQOL at the same level as controls, except for poorer physical functioning. Survivors in general, and female survivors specifically, had higher odds than controls of reporting symptoms of distress above cut-off, but survivors did not have higher mean levels of distress compared to controls. Survivors reporting distress levels above the cut-off had significantly poorer HRQOL regarding physical functioning and lower total PedsQL scores than controls scoring above the cut-off. Age (for HRQOL only), female gender, low educational level, and perceived low economic status significantly predicted HRQOL and distress. Education interacted with the effect of cranial radiation in predicting HRQOL.ConclusionsSurvivors reported similar mean levels of HRQOL and distress as controls, except for physical functioning. For cancer survivors, demographic variables predicted HRQOL and distress. Some groups of survivors require closer follow-up, and more attention should be paid to factors associated with poor HRQOL and psychological distress in survivors, including female gender, lower education level, and lower income. Survivors treated with cranial radiation may be particular vulnerable in combination with low education regarding HRQOL.

A systematic review of self‐reported pain in childhood cancer survivors

“…The risk factor with the greatest evidence was female sex, which was supported by five studies and confirmed previous studies that found female sex to be a risk factor for pain . This finding is consistent with previous research showing that female survivors in general are more vulnerable to lower scores of HRQOL as well as psychological distress than controls in general. This may result from greater vulnerability to treatment‐related toxicities among women, or it may reflect similar trends in the general population .…”

“…Female sex and a history of abdominal radiation were associated with cancer-related pain. Proportion of prevalent cases of impaired pain increased by age, ranging from 10%(20)(21)(22)(23)(24)(25)(26)(27)(28)(29) to 12% (30-39) and 15%(40)(41)(42)(43)(44)(45)(46)(47)(48)(49).…”

Psychological risk in long‐term survivors of childhood acute lymphoblastic leukemia and its association with functional health status: A PETALE cohort study

“…20,[28][29][30][31][32] Key factors of emotional distress frequency or severity supported by the evidence in the CCS population include younger age or adolescent age at diagnosis, older age at recall, female sex, lower socioeconomic status, single or divorced status, lack of health insurance, poor social relationships, neurocognitive impairment, pain, fatigue, chronic condition, and an overall perception of health deterioration and physical health status. 8,20,22,23,29,[33][34][35][36][37][38][39][40] Physical limitations may hinder age-appropriate activities, lead to difficulties in social relationships, and thus to psychological suffering. 7,9,[41][42][43] Particularly, impaired neurocognitive speed and executive function may affect emotional wellbeing as they hinder social functioning and are associated with lower educational attainment, employment discrimination, and unemployment.…”

School performance of childhood cancer survivors in Korea: A multi‐institutional study on behalf of the Korean Society of Pediatric Hematology and Oncology

“…The problems found in children with cancer include emotional and adaptation problems such as fatigue, changing moods, depression, post-traumatic stress, poor self-esteem, poor social abilities, physical complaints, impairment in memory function, and learning disabilities. [3][4][5][6][7] Evidence is emerging that educational functioning is a more accurate index of quality of life for children than neurocognitive tests because absenteeism, social isolation, post-traumatic stress, and physical modifications mainly may affect success at school. 8 Therefore, re-integration in school is important to facilitate the child's normal learning and attainment of academic skills.…”