Unmet needs and health care utilization in young adults with cerebral palsy

Nieuwenhuijsen, Channah; Laar, Yvette van der; Donkervoort, Mireille; Nieuwstraten, Wilbert; Roebroeck, Marij E.; Stam, Henk J.

doi:10.1080/09638280701622929

Cited by 67 publications

(87 citation statements)

References 34 publications

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“…If it is true that those in the greatest need are also those with the most unmet needs and if a society is judged by how it serves its most needy, then a fuller examination of unmet needs could be very revealing. One expression of unmet need among high users may be the coincident utilization of alternative and self-help approaches to complement or supplement the shortcomings of mainstream healthcare (Donnelly et al 2007;Nieuwenhuijsen et al 2008). …”

Section: Discussionmentioning

confidence: 99%

Unmet health care needs of people with disabilities: population level evidence

McColl

Jarzynowska²,

Shortt

2010

Disability & Society

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The present study examined population level data on unmet needs for adults with physical, sensory and cognitive disabilities, using the National Population Health Survey. The study revealed that disabled adults (aged 20-64) reported more than three times as many unmet health care needs as their non-disabled counterparts. Even after controlling for the effects of age, gender and poor health, disability had a significant effect on the perception of unmet needs, particularly disabilities associated with pain, hearing impairment and emotional problems. The greatest deterrent to receiving needed services among individuals with disabilities was cost. Despite being publicly funded and thereby presumably equally accessible to all, the health care system in Canada fails to meet the needs of some of its most vulnerable constituents -adults with disabilities.

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Section: Discussionmentioning

confidence: 99%

Unmet health care needs of people with disabilities: population level evidence

McColl

Jarzynowska²,

Shortt

2010

Disability & Society

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“…In group A and B in 2009, 70% of the participants with CP were ambulators with or without assistive devices compared with 78% in a Norwegian study (Jahnsen et al 2004b) and 76% in a Dutch study Scandinavian Journal of Disability Research 259 (Nieuwenhuijsen et al 2008). People with intellectual disabilities were not included in any of these studies.…”

Section: Mobilitymentioning

confidence: 90%

“…A Swedish qualitative study (Whitaker 2008) showed that parents are caregivers even if their disabled children are adults and have personal assistants. A Dutch study (Nieuwenhuijsen et al 2008) of adults (aged 16Á40) with CP found that 52% of the whole group and 90% of those with a severe disability met with a rehabilitation physician regularly. Almost three quarters of the participants had used allied health care at least once in the past year.…”

Section: Introductionmentioning

confidence: 99%

“…Of these, the most frequently used were the physical therapist (55%) and social services (32%). The unmet needs reported were mostly regarding information on complications, consequences and causes of CP (79%), mobility in terms of access to the community, driving a car and other peoples' willingness to help (66%) and health care in terms of physical therapy, in-patient rehabilitation and hospital specialists (66%) (Nieuwenhuijsen et al 2008). A US study of 64 adults with CP found that the majority of the participants with chronic pain did not access health care providers for help in managing their pain and that CP-related pain is undertreated among adults (Engel, Kartin, and Jensen 2002).…”

Section: Introductionmentioning

confidence: 99%

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Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

Törnbom

Jonsson

Sunnerhagen

2013

Scandinavian Journal of Disability Research

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The aim of this study was to investigate how symptoms and personal assistance needs change over time among people with cerebral palsy (CP) or meningomyelocele (MMC), and to identify unmet needs. The study design was a longitudinal follow up, both cohorts starting as young adults while treated at the adult habilitation clinic. The participants were interviewed by telephone. Group (A) was studied in 1983 (n 0 55), in 1997 (n 0 42) and in 2009 (n 0 28). Group (B) was studied in 1998 (n 0 30) and in 2009 (n 0 25). Perceived symptoms were aggravated in both groups in 2009 compared with 1997 (8), and significantly more aggravated in group A (older than group B). The number of participants needing practical assistance increased significantly in both groups between 1997Á1998 and 2009. Most people in both groups had contact with health care professionals and many wanted more assistance, especially access to a specialized team. As a consequence of aggravating symptoms, the need for specialized health care continues into adulthood.

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“…The recruitment process of these studies has been described in detail elsewhere (Fig 1). [9][10][11][12] In short, eligible patients had a clinical diagnosis of CP. Patients were excluded when they were diagnosed with additional diseases or disorders affecting motor functioning and when they or their caregiver lacked a basic knowledge of the Dutch language.…”

Section: Design and Subjectsmentioning

confidence: 99%

Developmental Trajectories of Daily Activities in Children and Adolescents With Cerebral Palsy

et al. 2013

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WHAT'S KNOWN ON THIS SUBJECT: Rehabilitation of people with cerebral palsy aims to achieve and maintain optimal performance in mobility and daily activities. Although insight into the developmental trajectories of activities from childhood into adulthood is important, little is known about long-term development. WHAT THIS STUDY ADDS:The gross motor function of children with cerebral palsy determines the developmental trajectories of mobility performance but not of daily activities, where intellectual disability was shown to be the determining factor. abstract OBJECTIVES: To describe the developmental trajectories of mobility performance and daily activities in children and young adults with cerebral palsy (CP). To explore the influence of gross motor function and intellectual disability on these trajectories. METHODS:Four hundred and twenty-four Dutch participants with CP (aged 1-20 years at study onset) were followed yearly over a period of 2 to 4 years. Developmental trajectories (from ages 1-16 years) were described for mobility performance and performance of daily activities, assessed by using the Vineland Adaptive Behavior Scale for gross motor function (classified by the Gross Motor Function Classification System) and intellectual disability (by IQ or school type). A subanalysis was done for performance of daily activities in a subgroup of participants without intellectual disability (aged 1-24 years). RESULTS:The developmental trajectories of mobility performance differed according to levels of gross motor function but not levels of intellectual disability. Intellectual disability affected the performance of daily activities, with lower overall trajectory levels for participants with intellectual disabilities. For participants without intellectual disability, high-level developmental trajectories were found, with values similar to those of typically developing children despite differences in gross motor function level.CONCLUSIONS: Mobility performance is determined mainly by levels of gross motor function. For performance of daily activities, intellectual disability was a more important determinant. Participants without intellectual disability showed developmental trajectories approaching values for typically developing participants. These estimated trajectories can guide rehabilitation interventions and future expectations for children and young adults with CP. Pediatrics 2013;132:e915-e923 AUTHORS:

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Unmet needs and health care utilization in young adults with cerebral palsy

Cited by 67 publications

References 34 publications

Unmet health care needs of people with disabilities: population level evidence

Unmet health care needs of people with disabilities: population level evidence

Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

Developmental Trajectories of Daily Activities in Children and Adolescents With Cerebral Palsy

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