Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population-based cohort study.
Psychooncology
; 22(1): 160-7, 2013 Jan.
Article
em En
| MEDLINE
| ID: mdl-21948459
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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Família
/
Neoplasias do Sistema Nervoso Central
/
Assistência de Longa Duração
/
Sobreviventes
Tipo de estudo:
Etiology_studies
/
Incidence_studies
/
Observational_studies
/
Qualitative_research
/
Risk_factors_studies
/
Screening_studies
Limite:
Adolescent
/
Adult
/
Aged
/
Child
/
Female
/
Humans
/
Male
/
Middle aged
País/Região como assunto:
Oceania
Idioma:
En
Revista:
Psychooncology
Assunto da revista:
NEOPLASIAS
/
PSICOLOGIA
Ano de publicação:
2013
Tipo de documento:
Article
País de afiliação:
Suécia