Health and Functional Disability in Adult Survivors of Childhood Central Nervous System (CNS) Tumours: Illness/treatment-related Dysfunction, and Long-Term Rehabilitation and Aftercare Needs

As part of the longitudinal Swedish childhood CNS tumour LIFE study, this study aimed at identifying self-experienced late effects (SELEs) among very long-term survivors (VLTSs), and the extent to which sequelae were experienced as disabling. SELEs were analysed in relation to self-experienced needs of -, and current involvement in clinical follow-up and rehabilitation. The study targeted an entire national cohort of 706 Swedish 24–46 years old (mean = 32) VLTSs diagnosed 1982–2001. SELEs data were collected using a study-specific questionnaire in the second wave of data collection, while single predictor factor data emanate from previous wave 6 years earlier. SELEs assessment included open-end question form. For survivors' ratings of SELEs difficulty, a 5-point Likert-scale measurement was used. Data were quantitatively and qualitatively analysed. Three hundred thirty, 65.7%, of 507 data-providers, reported one to several SELEs. Sixteen identified categories of problems covered a range of SELEs of medical, neurological, neurosensory, or neuropsychological origin. Most prevalent sequelae involved one or several of vision, balance, endocrinopathy, fatigue, hearing, pain, memory, and seizures/epilepsy. SELEs were experienced as harmless by 7.4%; somewhat, clearly, very difficult by 33.4%, 28.5%, and 24.8% respectively; and completely disabling by 5.9%. Occurrence and severity varied with diagnosis age, gender, sub-diagnosis, and whether past cancer treatment included radiation therapy or not. Out of 132 survivors who suffered from considerable to entirely disabling SELEs, and who experienced need of surveillance/follow-up, 21% lacked access to such. Health status 6 years earlier predicted occurrence of SELEs later in life. A majority of CNS tumour VLTSs experience late effects that intrude upon health, function and quality of survival. Unmet needs of aftercare and rehabilitation can be identified, most prominently among females. Today, as many as one out of five studied CNS tumour VLTSs lack required specialized surveillance or access to needed rehabilitation in a long-term follow-up plan.