The GMFM, PEDI, and CP-QOL and perspectives on functioning from children with CP, parents, and medical professionals

Abstract

Objective: Many outcome measures assess function of children with cerebral palsy (CP), but establishing meaningful clinical change remains challenging. This study explored correlations between subjective status ratings in several functional domains, made by children, parents, and medical professionals. The ratings were compared with three outcome measures in preparation for longitudinal work to establish minimal clinically important change. Method: Children were assessed with the Gross Motor Function Measure (GMFM), Pediatric Evaluation of Disability Inventory (PEDI), and Cerebral Palsy Quality of Life Questionnaire for Children (CP-QOL). Respondents provided Likert scale and Linear Analogue Scale ratings of gross motor function, self care, social function, quality of life, and overall function. Correlations were calculated for outcome measure scores and ratings. Results: 122 children with CP across all GMFCS and MACS levels, 79 male, aged 8.1 ± 2.9 years generated status ratings by 27 child reports, 122 parent reports, and 110 medical professional reports. Most ratings were moderately to highly correlated between parents and medical professionals. Outcome measure scores were frequently significantly correlated with pertinent ratings from medical professionals and parents but usually not with child ratings. Conclusions: Parents and medical professionals have similar perceptions of gross motor, self-care, quality of life, and overall status for children with CP and these perceptions correlate with standard outcome measures, but often do not agree with children's ratings. Longitudinal use of subjective status ratings from parents and professionals should contribute to establishing minimal clinically important differences for CP outcome measures.

Longitudinal study showed that the quality of life of Finnish adolescents with cerebral palsy continued to be relatively good

“…With regard to the background factors in this present study, the functional GMFCS and MACS levels were significantly associated with feelings about functioning in both the adolescents’ self‐reports and in the caregivers’ evaluation. This was in line with an earlier study, where the researchers found a correlation between subjective well‐being and the severity of the GMFCS and MACS levels . In particular, gross motor function appears to have been a significant factor in several previous studies .…”

Factors Related to Psychosocial Quality of Life for Children with Cerebral Palsy

“…In multiple validation studies the CP QOL-Child had good test-retest reliability, construct validity and internal consistency, and Cronbach's alphas of 0.74 to 0.91 [5, 28, 30, 31]. Additionally, parental perceptions provided in the CP QOL-Child correlate with medical professional ratings of patient QOL for children with CP [32]. There is a version of the CP QOL-child that is self-report for children 9 to 12 years old.…”

Global developmental abilities of cochlear implanted children with spastic cerebral palsy: two experimental groups

“…Motor difficulties are limited to experiences of the children not only regarding interaction with people, objects, and events, but also regarding how to manipulate objects, repeat actions, control their own bodies and body scheme. Therefore, the child with neuropsychomotor development delay may lose concrete opportunities to evolve his or her abilities, thus causing gaps in the perceptive, cognitive, linguistic, and social areas (5,(7)(8)(9)(10) . So, limitations to explore the environment voluntarily are expected, which can lead to flaws in the sensory input, causing deficit in perceptive areas and damage in the development of language and cognition.…”

“…Literature shows the effect of the motor condition of CP on several areas of development (3)(4)(5)(6)(7)(8)(9)(10)(11) . In the presence of motor delay, the child may lose opportunities to acquire knowledge, which is influenced by the relationships the child establishes with the environment and with important interferences for general learning and quality of life (5,7,11) .…”

“…Studies present a rate of 12 to 30% of hearing loss (HL) in children with CP (14) . The early identification of HL in these children is also relevant due to the impact on communication, cognitive, and psychosocial development (9)(10)(11)(12)(13)(14)(15)(16)(17) .…”