title: Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study.
abstract: OBJECTIVE
  This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants.
  
  
  METHODS
  In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child.
  
  
  RESULTS
  Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥ 5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t(218) = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis.
  
  
  CONCLUSIONS
  Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.
authors.affiliation: Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
authors.forename: Emma I
authors.initials: EI
authors.lastname: Hovén
authors.forename: Birgitta
authors.initials: B
authors.lastname: Lannering
authors.forename: Göran
authors.initials: G
authors.lastname: Gustafsson
authors.forename: Krister K
authors.initials: KK
authors.lastname: Boman
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000704:Analysis of Variance; D001315:Australia; D016543:Central Nervous System Neoplasms / Q000523:psychology* / Q000628:therapy; D002648:Child; D015331:Cohort Studies; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008134:Long-Term Care / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011159:Population Surveillance; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life / Q000523:psychology*; D035781:Siblings / Q000523:psychology; D018434:Sickness Impact Profile; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D055815:Young Adult