From childhood to adulthood: health care use in individuals with cerebral palsy

Roquet, M.; Garlantézec, Ronan; Rémy-Néris, Olivier; Sacaze, Elise; Gallien, P.; Ropars, Juliette; Houx, Laëtitia; Pons, Christelle; Brochard, Sylvain

doi:10.1111/dmcn.14003

Cited by 41 publications

(83 citation statements)

References 32 publications

(58 reference statements)

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“…24 There are also previous reports of adults with CP having unmet health care needs, for example not accessing health care for pain treatment, 25 or rehabilitation, 26 and an increased morbidity and mortality. Populationbased epidemiological data on adults with CP are surprisingly scarce.…”

Section: Wheelchair Ambulationmentioning

confidence: 97%

“…However, these adults may still be frequent visitors to primary health care, as indicated in a Canadian study of children and young adults with CP. 24 There are also previous reports of adults with CP having unmet health care needs, for example not accessing health care for pain treatment, 25 or rehabilitation, 26 and an increased morbidity and mortality. 6,8,11,24,27 This might indicate that many adults with CP do not access health care even though they have the need.…”

Section: Wheelchair Ambulationmentioning

confidence: 97%

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Cerebral palsy prevalence, subtypes, and associated impairments: a population‐based comparison study of adults and children

Jonsson

Eek

Sunnerhagen

et al. 2019

Develop Med Child Neuro

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AIM To describe the prevalence of cerebral palsy (CP), subtype distribution, motor and intellectual impairment, and epilepsy in adults with CP compared with children with CP.METHOD CP subtype and impairment data from the population-based CP register of western Sweden and population data from Statistics Sweden were used to compare surviving adults (n=581; 244 females, 337 males) born between 1959 and 1978, with the same cohort as children (n=723; 307 females, 416 males), and with the most recent cohort, born from 2007 to 2010 (n=205; 84 females, 121 males).RESULTS Prevalence of CP in adults born between 1959 and 1978 was 1.14 per 1000. The occurrence of impairments differed between CP subtypes. Motor and intellectual impairment were closely related, regardless of subtype. Subtype distribution among survivors differed significantly from the original cohorts (p=0.002), and the most recent cohort (p<0.01), tetraplegia and dyskinetic CP being less common in survivors. Severe motor impairment, intellectual disability, and epilepsy were less common among survivors than in the original cohorts (p=0.004, p=0.002, p=0.037) and the most recent cohort (p=0.004, p=0.008, p<0.01).INTERPRETATION Data on prevalence, subtype distribution, and impairments in children with CP are not applicable to adults with CP. Population-based studies of adults with CP are needed.

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Section: Wheelchair Ambulationmentioning

confidence: 97%

Section: Wheelchair Ambulationmentioning

confidence: 97%

Cerebral palsy prevalence, subtypes, and associated impairments: a population‐based comparison study of adults and children

Jonsson

Eek

Sunnerhagen

et al. 2019

Develop Med Child Neuro

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“…This might be a result of the method of sampling (31). On the other hand, it is known that, after leaving paediatric care, people with CP receive most of their care from rehabilitation physicians and physical therapists (32). Focusing on mobility and movement-related function can be understood from the definition of CP as a disorder of movement and posture, although additional impairments are often presented.…”

Section: Discussionmentioning

confidence: 99%

Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

Limsakul¹,

Noten²,

Selb³

et al. 2020

J Rehabil Med

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LAY ABSTRACTNowadays the population of persons with cerebral palsy is mostly at adult age. The clinical care and research for this understudied population would benefit from standardized outcomes. Therefore, we aim to develop an International Classification of Functioning, Disability and Health Core Set for adults with cerebral palsy, integrating knowledge from several perspectives. One of these perspectives is the experts' view, which we studied in a survey among professionals working with adults with cerebral palsy worldwide. Professional experts indicated over 200 relevant aspects of functioning for adults with cerebral palsy, covering a broad variety. They most often reported problems for adults with cerebral palsy in mobility or having pain, and on the hindrance of construction and technology of public or private buildings for their functioning. The present results emphasize the known heterogeneity of cerebral palsy and the large number of impairments and activity limitations in adulthood. Also, experts underlined the importance of person-environment interactions, by frequently naming environmental factors.Objective: To identify areas of functioning in adults with cerebral palsy that are considered relevant by experts, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with cerebral palsy. Participants: Experts from various professional backgrounds worldwide who had experience working with adults with cerebral palsy for ≥2 years and were able to complete the survey in the English language. Methods: A cross-sectional study using an international internet-based survey. The experts were asked to address relevant areas of functioning in adults with cerebral palsy. These areas of functioning were then linked to the ICF and the frequencies analysed. Results: A total of 126 experts from 32 countries completed the survey. From the responses, 217 unique second-level ICF categories were identified. The three most frequently mentioned categories were "design, construction and building products and technology of buildings for public use (e150, 77%) and private use" (e155, 67%), followed by "sensation of pain" (b280, 62%). Conclusion: The broad diversity of ICF categories reported by the experts emphasize the known heterogeneity of cerebral palsy and the variety of functioning in adulthood. They also reported on many environmental factors, illustrating the importance of person-environment interactions. These findings provide information about relevant issues for use in developing an ICF Core Set for adults with cerebral palsy.

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“…Although the neurological injury causing CP is defined as non-progressive, the musculoskeletal, neurological and mental conditions worsen in the course of time [3][4][5]. Adults with CP face health problems such as decreased mobility and self-care [6], hypoactivity [7], chronic pain [3,8], sarcopenia [9,10], spasticity [11,12], musculoskeletal deformities (e.g., articular contractures [12,13], osteopenia [14], degenerative arthritis [14,15], deformities of hips [16,17], knees [16,18], ankles [12,19], feet [16,17] and spine [20][21][22], epilepsy [3], genitourinary problems [16,23] and depression and anxiety [24]. It has been proven that as the age for persons with CP progresses also the use of certain medication (respectively, analgesic, antispastic, and psychotropic drugs in ambulatory patients and psychotropic, antispastic, antiepileptic, and digestive drugs in non-ambulatory patients) Int.…”

Section: Introductionmentioning

confidence: 99%

“…WELFARE. 2018 increases [3]. However, the physical medicine and rehabilitation doctor follow-up, the use of orthoses, and receiving rehabilitation decreases with age [3].…”

Section: Introductionmentioning

confidence: 99%

Readiness of independency in health care management for young adults with cerebral palsy

2019

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Transition from paediatric to adult health care services is a crucial process for young adults with long-term medical conditions and well organized and coordinated transition process has been strongly highlighted. The aims of this research were to assess the young adults with cerebral palsy overall readiness for adult life, the independency in health care management and independency impacting factors. Eighty young adults (age range 16–21 years) with CP and normal or slightly decreased mental function participated. There were done “face-to-face” structured interviews using the Rotterdam Transition Profile and the Transition Readiness Assessment Questionnaire also the characteristics of participants were obtained. It was revealed that young adults with cerebral palsy show low levels of participation in almost all domains of transition to adult life, the level of attendance of rehabilitation services is not sufficient, and the level of independency for young adults with CP in health care management is between phases of preparation and action. The most impacting factor for independency in health care management was found to be the cognitive status.

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From childhood to adulthood: health care use in individuals with cerebral palsy

Cited by 41 publications

References 32 publications

Cerebral palsy prevalence, subtypes, and associated impairments: a population‐based comparison study of adults and children

Cerebral palsy prevalence, subtypes, and associated impairments: a population‐based comparison study of adults and children

Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

Readiness of independency in health care management for young adults with cerebral palsy

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