Changes in Gross Motor Function and Health-Related Quality of Life in Adults With Cerebral Palsy: An 8-Year Follow-Up Study

Usuba, Koyo; Oddson, Bruce; Gauthier, Alain P.; Young, Nancy L.

doi:10.1016/j.apmr.2014.05.018

Cited by 26 publications

(16 citation statements)

References 39 publications

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“…Cerebral palsy (CP) is a child‐onset condition that may impact development in the areas of movement, posture, and sensory processing over the lifespan (Rosenbaum et al, ). Individuals with CP, and their families, often receive therapeutic intervention and supports during childhood and adolescence, but it is likely that those services decrease drastically in the second decade, while their needs remain or may increase into adulthood (Usuba, Oddson, Gauthier, & Young, ). Therefore, the transition to adulthood can be a difficult time for adolescents with CP and their families.…”

Section: Introductionmentioning

confidence: 99%

“If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

Freeman

Stewart

Cunningham

et al. 2018

Child

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Section: Introductionmentioning

confidence: 99%

“If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

Freeman

Stewart

Cunningham

et al. 2018

Child

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“…Study and participant characteristics are presented in Table 4. Most of the studies (22 of 31) were crosssectional studies [15, 21, 22, 34, 36-38, 40-45, 47-52, 54, 58, 59], six were prospective cohort studies [33,35,39,46,53,57], two were case-control studies [11,56] and one was a randomised controlled trial [55]. The selected studies were conducted in a range of different countries; most were (n = 15) from Canada [21, 22, 33, 35, 36, 38-43, 46, 49, 53, 57].…”

Section: Study and Patient Characteristicsmentioning

confidence: 99%

“…The vast majority of studies (23 of 31) included only child/adolescent participants [11, 15, 33, 35, 36, 38-44, 46-54, 56, 58]. Of the remaining studies, six included children/adolescents and adults [21,22,34,37,55,57] and two included only adults [45,59]. PBM reporting was predominantly from proxies (13 of 23 studies); eleven studies included both self-reported and proxy data [15, 21, 22, 36, 43, 48-50, 53, 54, 57] and seven studies included only self-reported PBM data [11,34,37,45,55,58,59].…”

Section: Study and Patient Characteristicsmentioning

confidence: 99%

“…In terms of use of PBMs, 22 of the studies used a version of the HUI [15, 21, 22, 33, 35, 36, 38-44, 46, 48, 49, 51-54, 56, 57], eight used a version of the EQ-5D [11,15,34,37,47,50,58,59], three used a version of AQoL instrument [21,22,57], one used the 15D [45] and one used the SF-6D [55].…”

Section: Study and Patient Characteristicsmentioning

confidence: 99%

“…Two studies reported on the relationship between different PBMs in CP [22,57]. Although utility scores derived from the HUI3 and AQoL were strongly correlated (r = 0.87; p < 0.001) [22], HUI3 derived utility scores tended to be lower than AQoL derived utility scores [22,57].…”

Section: Convergent Validity: Comparing Measuresmentioning

confidence: 99%

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Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

2020

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Introduction: Mobility impairment is the leading cause of disability in the UK. Individuals with congenital mobility impairments have unique experiences of health, quality of life and adaptation. Preference-based outcomes measures are often used to help inform decisions about healthcare funding and prioritisation, however the applicability and accuracy of these measures in the context of congenital mobility impairment is unclear. Inaccurate outcome measures could potentially affect the care provided to these patient groups. The aim of this systematic review was to examine the performance of preference-based outcome measures for the measurement of utility values in various forms of congenital mobility impairment. Methods: Ten databases were searched, including Science Direct, CINAHL and PubMed. Screening of reference lists and hand-searching were also undertaken. Descriptive and narrative syntheses were conducted to combine and analyse the various findings. Results were grouped by condition. Outcome measure performance indicators were adapted from COSMIN guidance and were grouped into three broad categories: validity, responsiveness and reliability. Screening, data extraction and quality appraisal were carried out by two independent reviewers. Results: A total of 31 studies were considered eligible for inclusion in the systematic review. The vast majority of studies related to either cerebral palsy, spina bifida or childhood hydrocephalus. Other relevant conditions included muscular dystrophy, spinal muscular atrophy and congenital clubfoot. The most commonly used preference-based outcome measure was the HUI3. Reporting of performance properties predominantly centred around construct validity, through known group analyses and assessment of convergent validity between comparable measures and different types of respondents. A small number of studies assessed responsiveness, but assessment of reliability was not reported. Increased clinical severity appears to be associated with decreased utility outcomes in congenital mobility impairment, particularly in terms of gross motor function in cerebral palsy and lesion level in spina bifida. However, preference-based measures exhibit limited correlation with various other condition-specific and clinically relevant outcome measures.(Continued on next page) Conclusion: Preference-based measures exhibit important issues and discrepancies relating to validity and responsiveness in the context of congenital mobility impairment, thus care must be taken when utilising these measures in conditions associated with congenital mobility impairments.

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Cerebral Palsy

Davis,

Tolentino,

Lee

et al. 2024

Care of Adults With Chronic Childhood Conditions

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Changes in Gross Motor Function and Health-Related Quality of Life in Adults With Cerebral Palsy: An 8-Year Follow-Up Study

Cited by 26 publications

References 39 publications

“If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

“If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood

Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness

Cerebral Palsy

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