Prognosis for Gross Motor Function in Cerebral Palsy: Creation of Motor Development Curves

123

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...

Section: Methodsmentioning

confidence: 99%

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

Rosenbaum

Livingston

Palisano

et al. 2007

123

“…1 In children with cerebral palsy (CP), which is the most common motor disorder in childhood (with a prevalence of 2 per 1000 live births), 2 this ability is not fully established, 3 even in children over 5 years of age with the best functional characteristics. 4 In general, gross motor capacity can be considered an important basis for movement activities of daily living or daily-life mobility. In typical development, children's daily-life mobility gradually dissociates from their gross motor capacity as it becomes increasingly determined by other intrinsic (cognitive and personal) and extrinsic (contextual) factors.…”

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confidence: 99%

“…13,14 Severity, classified by the GMFCS and limb distribution, has previously been shown to influence gross motor capacity in children with CP. 4,15 It is important to gain insight into severity moderating the relationship between gross motor capacity and daily-life mobility in children with CP, especially after the age of 4 years.The objective of the present study was to examine the relationship between gross motor capacity and daily-life mobility in children with CP aged from 4 to 7 years, and to explore the moderation of the relationship by severity of CP. Daily-life mobility was studied in terms of both capability and performance.…”

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confidence: 99%

See 1 more Smart Citation

Relationship between gross motor capacity and daily‐life mobility in children with cerebral palsy

Smits

Gorter

Ketelaar

et al. 2010

AIM The aim of this study was to examine the relationship between gross motor capacity and daily-life mobility in children with cerebral palsy (CP) and to explore the moderation of this relationship by the severity of CP.METHOD Cross-sectional analysis in a cohort study with a clinic-based sample of children with CP (n=116; 76 males, 40 females; mean age 6y 3mo, SD 12mo, range 4y 8mo-7y 7mo) was performed. Gross motor capacity was assessed by the Gross Motor Function Measure (GMFM-66). Daily-life mobility was assessed using the Pediatric Evaluation of Disability Inventory (PEDI): Functional Skills Scale (FSS mobility) and Caregiver Assistance Scale (CAS mobility). Severity of CP was classified by the Gross Motor Function Classification System (48% level I, 17% level II, 15% level III, 8% level IV, 12% level V), type of motor impairment (85% spastic, 12% dyskinetic, 3% ataxic), and limb distribution (36% unilateral, 49% bilateral spastic).RESULTS Scores on the GMFM-66 explained 90% and 84% respectively, of the variance of scores on PEDI-FSS mobility and PEDI-CAS mobility. Limb distribution moderated the relationship between scores on the GMFM-66 and the PEDI-FSS mobility, revealing a weaker relationship in children with unilateral spastic CP (24% explained variance) than in children with bilateral spastic CP (91% explained variance).INTERPRETATION In children aged 4 to 7 years with unilateral spastic CP, dissociation between gross motor capacity and daily-life mobility can be observed, just as in typically developing peers.Gross motor capacity is the ability to use large groups of muscles to keep one's balance and change positions (e.g. sitting, standing, walking, running, and jumping). In typically developing children, this ability is well established by the age of 5 years. 1 In children with cerebral palsy (CP), which is the most common motor disorder in childhood (with a prevalence of 2 per 1000 live births), 2 this ability is not fully established, 3 even in children over 5 years of age with the best functional characteristics. 4 In general, gross motor capacity can be considered an important basis for movement activities of daily living or daily-life mobility. In typical development, children's daily-life mobility gradually dissociates from their gross motor capacity as it becomes increasingly determined by other intrinsic (cognitive and personal) and extrinsic (contextual) factors. 1 Both the concept of gross motor capacity and the concept of daily-life mobility are found within the activities domain of the International Classification of Functioning, Disability and Health. 5 Although the two concepts can be distinguished by qualifying them, respectively, as 'capacity' and 'performance', various qualifiers are frequently used interchangeably, causing confusion even within the domain of activities. In the field of motor control, the ambiguity of qualifiers such as 'ability', 'capacity', 'capability', 'skill', and 'performance' has been criticized. 6 In unravelling the complex relationships in the development...

“…6,[12][13][14][15][16][17] Predictions about outcome in habilitation are usually expressed as functional performance, 18,19 for example, the motor functions in CP are classified according to the Gross Motor Function Classification System (GMFCS). 20 A child classified at GMFCS level V will need more additional care than a child at GMFCS level V. However, in several studies that have focussed on the consequences of non-progressive, permanent developmental disorders, it was concluded that there is an urgent need to define these consequences in terms of need of additional care. [9][10][11]16,21,22 Defining the severity of disorders in this way is generic, and provides insight into the efforts parents, other caregivers, and the community must make, not only to provide the child with the necessary care, but also to prevent secondary health conditions and to contribute to resource policies and quality assurance.…”

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confidence: 99%

Predicting additional care in young children with neurodevelopmental disability: a systematic literature review

Meester-Delver

Beelen

Hennekam

et al. 2006

Children with developmental disabilities often show a variety of associated impairments that lead to a lifelong need for additional care. Careful assessment of these impairments is required not only for diagnostic purposes but also to inform the parents about the expected additional care needs in the future. We present a systematic review of the literature to identify instruments that classify the type and amount of this care for the individual child. A literature search was performed in the Medline database (January 1966‐ June 2005) on instruments that classify the type and amount of expected additional care needs in the future. Seven standardized measurement instruments describing current additional care needs were identified, but none of these instruments was developed to provide information about the expected need for additional care in the future. For parents of young children with non‐progressive developmental disorders it is essential to be informed on the expectations of required additional care in the future. However, comprehensive instruments providing such information are currently lacking and, thus, need to be developed.