Pain and hospital admissions are important factors associated with quality of life in nonambulatory children

Elema, Agnes; Zalmstra, Trees A. L.; Boonstra, Albert; Narayanan, Unni G.; Reinders-Messelink, Heleen A.; Putten, Annette A. J. v. d.

doi:10.1111/apa.13493

Cited by 26 publications

(43 citation statements)

References 33 publications

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“…A recent Dutch study of 66 non-walking children with CP also found that GMFCS V predicted low CPCHILD total score and low score on domain 1 (Elema et al. 2016). In that study, socioeconomic factors were included in addition to child characteristics.…”

Section: Discussionmentioning

confidence: 99%

Severe hip displacement reduces health-related quality of life in children with cerebral palsy

Ramstad¹,

Jahnsen²,

Terjesen

2016

Acta Orthopaedica

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Background and purposeHip displacement is common in children with severe cerebral palsy (CP) and can cause problems such as pain, contractures, and nursing difficulties. Caregiver priorities and child health index of life with disabilities (CPCHILD) is a recently developed measure of health-related quality of life (HRQL) in children with severe CP. The associations between CPCHILD scores and hip displacement have not been investigated. We explored the effect of hip displacement on HRQL.Patients and methods67 children were recruited from the population-based Norwegian CP register. Mean age was 9 (7–12) years. There were 40 boys. Gross motor function classification system (GMFCS) distribution was 12 level III, 17 level IV, and 38 level V. Hip displacement was assessed by radiographic migration percentage (MP). The criterion for hip displacement was MP of the worst hip of ≥40%. Primary caregivers responded to 5 of the 6 domains of the CPCHILD questionnaire.ResultsHip displacement was found in 18 children and it was significantly associated with lower scores on the CPCHILD domains 3 (Comfort and Emotions) and 5 (Health), but not with domains 1 (Activities of Daily Living/Personal Care), 2 (Positioning, Transfer, and Mobility), and 6 (Overall Quality of Life). GMFCS level V was a significant predictor of low scores in all the domains.InterpretationFor the assessment of HRQL in children with severe CP and hip problems, we propose a modified and simplified version of the CPCHILD consisting of 14 of 37 questions. This would reduce the responders’ burden and probably increase the response rate in clinical studies without losing important information.

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Section: Discussionmentioning

confidence: 99%

Severe hip displacement reduces health-related quality of life in children with cerebral palsy

Ramstad¹,

Jahnsen²,

Terjesen

2016

Acta Orthopaedica

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“…2,4 In addition to respiratory illnesses being the major contributor of premature death in people with CP, some also have recurrent respiratory illnesses which has a major impact on their quality of life. 5 Children and young people with CP also have a high rate of hospital admissions for respiratory illnesses. 6,7 Hospital care is also very costly.…”

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confidence: 99%

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement

Gibson

Blackmore²,

Chang

et al. 2020

Develop Med Child Neuro

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Respiratory illness is the leading cause of mortality in children with cerebral palsy (CP). Although risk factors for developing chronic respiratory illness have been identified, comprehensive clinical care recommendations for the prevention and management of respiratory illness do not currently exist. We invited over 200 clinicians and researchers from multiple disciplines with expertise in the management of respiratory illness in children with CP to develop care recommendations using a modified Delphi method on the basis of the RAND Corporation-University of California Los Angeles Appropriateness Method. These recommendations are intended for use by the wide range of practitioners who care for individuals living with CP. They provide a framework for recognizing multifactorial primary and secondary potentially modifiable risk factors and for providing coordinated multidisciplinary care. We describe the methods used to generate the consensus recommendations, and the overall perspective on assessment, prevention, and treatment of respiratory illness in children with CP.

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“…These repeated and lengthy hospital stays for respiratory illness represent a heavy burden for families. For children with CP, hospitalisation is one of the major factors impacting on health-related quality of life 3. Twenty-one ICD-10 diagnostic codes were recorded for these 98 admissions.…”

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confidence: 99%

Healthcare usage for respiratory illness by paediatric inpatients with cerebral palsy

et al. 2020

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Healthcare usage for respiratory illness by paediatric inpatients with cerebral palsyChildren with severe cerebral palsy (CP) have many medical co-morbidities, often managed by hospital inpatient admissions. Children with CP are hospitalised 7 times more than their neurotypical peers, and the leading cause of medical hospital admissions is respiratory illness. 1 Lower respiratory tract illness in children with CP has multifactorial aetiology, including community-acquired bacterial and viral infections, acute aspiration pneumonia and chronic aspiration-related airway disease. It requires coordinated care from multiple medical

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Pain and hospital admissions are important factors associated with quality of life in nonambulatory children

Abstract: Pain and hospital admissions were the most important factors that were negatively associated with HRQoL in nonambulatory children with CP between five to 18 years.

Cited by 26 publications

References 33 publications

Severe hip displacement reduces health-related quality of life in children with cerebral palsy

Severe hip displacement reduces health-related quality of life in children with cerebral palsy

Prevention and management of respiratory disease in young people with cerebral palsy: consensus statement

Healthcare usage for respiratory illness by paediatric inpatients with cerebral palsy

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