Quality of life and health‐related quality of life of adolescents with cerebral palsy

Abstract

This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r 2 ). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations.Important aspects of life for individuals with cerebral palsy (CP) include social participation and having meaning and purpose in life. During the past decade there has been a growing interest in concepts and measures associated with quality of life (QOL). Discussion continues about the meaning of various constructs of QOL, 1 as people work to describe the important conceptual variations among terms such as functional status, health status, and health-related quality of life (HRQOL). Livingston et al. 2 have reviewed the literature that reports various aspects of well-being among adolescents with CP. They concluded that measurement of QOL and HRQOL poses methodological challenges and observed that emphasis has traditionally been on functional or health status rather than personal perspectives of well-being.In brief, 'functional status' refers to 'the degree to which an individual is able to perform socially allocated roles free of physical or mental limitations'; 3 it focuses on the performance of specific tasks, such as activities of daily living. When people refer to 'health status' they generally consider broader medical and functional well-being, sometimes reported in terms of 'impact of disability'. 4 Assessments of QOL and HRQOL shift the emphasis on well-being to the realm of the subjective, toward outcomes not directly observable by a third party and not usually measured along a physical dimension. 5 Although the area of health or function measured in QOL and HRQOL may be either objective or subjective (such as the abil...

Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy

“…Almost two-thirds of the sample of children was male, and almost half had mild motor impairments (level I GMFCS). Not surprisingly, the children who were able to complete the PedsQL were somewhat older, had less functional limitations in motor, social, communication, and daily living skill domains, and were more likely to be integrated into regular schools compared to children who were unable to complete questionnaires (similar to Rosenbaum et al [29]). Of the 48 families in which a parent and child completed the PedsQL, 31.3% of mothers and 45.5% of fathers had high school education only, and 61.7% of mothers and 93.2% of fathers were employed.…”

Relationship between Function and Health-Related Quality of Life of School-Aged Children with Cerebral Palsy

“…Niewczyk and Granger 2) noted the importance of a clear definition of terms when assessing outcomes, stating that function refers to a person's ability to perform basic daily living skills such as eating, toileting, grooming, walking, and interacting with others, whereas HRQOL refers to an overall assessment of well-being across various domains such as physical and psychosocial well-being 3) . Most research related to the quality of life or HRQOL, for individuals with CP has shown that physical well-being is positively correlated with mobility and that mobility dose not correlate consistently with psychosocial well-being [4][5][6][7] . Grilli et al 8) reported associations between activities of daily living (ADL) and HRQOL using the functional independence measure (WeeFIM) and the pediatric quality of life inventory (PedsQL4,0) individually for children with global developmental delay.…”

Nonoral Feeding for Children and Youth With Developmental or Acquired Disabilities

“…Comorbid conditions, such as seizure disorders, hearing impairments, abnormal muscle tone, or postural instability, can be present. 17 Any of these factors (or multiple combinations) can affect eating and swallowing skills, leading to nutritional compromise. 18 Feeding problems for children who have cerebral palsy may manifest as oral fluid/food spillage while feeding, increased length of meals (often confused as "behavioral"), coughing/gagging with feeding, recurrent lower respiratory infections, GER, and/or nasal reflux from the posterior pharynx.…”

“…Neither clinicians nor researchers have yet to agree on a universal definition of either QOL or HRQOL. For purposes of this article, the following are general descriptions: QOL: the overall sense of well-being, including aspects of happiness and satisfaction with life as a whole HRQOL: aspects of QOL that affect health (physical or mental) or are affected by health and that are associated with life satisfaction 17,24 Petersen et al described caregivers' perceptions of nonoral feeding for children who have developmental disabilities.…”