Abstract
Purpose. To determine the quality of life, associations, and costs of a multidiagnosis group of special needs children. Methods. In this cross-sectional survey families were identified from the Children's Treatment Network, a Canadian multisector program for children with special needs. Families were eligible if the child was aged 2–19 years, resided in Simcoe/York, and if there were multiple child/family needs. Quality of life was measured using the PedsQL (n = 429). Results. Quality of life scores were lower in this group compared to published healthy and single disorder groups of children. Quality of life scores decreased with advancing age. Child psychosocial well-being was more strongly associated with child/family variables compared to physical well-being. Health Utilization costs were higher in children with greater physical challenges. Conclusions. Further research is needed in other complex needs child samples to confirm the decrease in quality of life found in these children into adolescence. Investigations into the interactions of child and family variables are needed.
Highlights
The importance of quality of life research has been accepted
The objectives of this paper were threefold: first, to report the quality of life in a multi-diagnosis, 2–19-year-old group of special needs children/youth; to investigate associations between family/child variables with the child’s physical and psychosocial quality of life; it was hypothesized that psychosocial quality of life would have stronger associations with child/family variables than physical quality of life; and to explore trends in the direct and indirect costs associated with quality of life in these families
The majority of parent/guardian most knowledgeable (PMK) were mothers of the children (85%), born in Canada (75%), and spoke English (90%)
Summary
The importance of quality of life research has been accepted. Regardless of the disease process, improving a person’s quality of life has become an important goal of treatment programs. Quality of life studies have been largely confined to single disease states. Absent from such studies is an understanding of the quality of life of children with heterogeneous diagnoses often participating in treatment programs with unpredictable prognoses including a deterioration in physical and cognitive function. Varni et al [1] have recently reported detailed findings on the quality of life (physical and psychosocial) of children and youth both healthy and with varying chronic conditions such as asthma, cancer, cerebral palsy, and psychiatric disorders using the Pediatric Quality of Life Inventory (PedsQL). The quality of life of a complex multidiagnosis group of special needs children and youth has not been reported
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