Health issues in young adults with cerebral palsy: Towards a life-span perspective

Hilberink, Sander R.; Roebroeck, Marij E.; Nieuwstraten, Wilbert; Jalink, Loes; Verheijden, Johannes; Stam, Henk J.

doi:10.2340/16501977-0103

Cited by 114 publications

(145 citation statements)

References 33 publications

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“…In the Netherlands there is no national CP register, and less than onethird of the adults with CP are under the regular control of a rehabilitation physician. 1 In fact, only 5% of the present study sample was currently receiving rehabilitation treatment. Consequently, adults with CP are difficult to trace back and may not be inclined to participate in research.…”

Section: %mentioning

confidence: 79%

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Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy

Slot

Nieuwenhuijsen

Berg-Emons

et al. 2012

Develop Med Child Neuro

186

153

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AIM To investigate the prevalence and co-occurrence of chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy (SBCP) and explore associations of chronic pain and fatigue with depressive symptoms and daily functioning.METHOD Fifty-six adults with SBCP without severe cognitive impairment participated (35 males, 21 females; mean age 36y 5mo, SD 5y 10mo; Gross Motor Function Classification System level I [13], II [28], III [11], IV [4]). Chronic pain (>3mo), severity and nature of fatigue (Fatigue Severity Scale; Multidimensional Fatigue Inventory), and depressive symptoms (Center for Epidemiological Studies Depression Scale) were assessed. Associations were explored using multivariable logistic regression analyses. RESULTSThe study sample had a higher prevalence of chronic pain (75% vs 39%; p<0.001), mean fatigue (Fatigue Severity Scale, 4.4 [SD 1.3] vs 2.9 [SD 1.1]; p<0.001), and prevalence of depressive symptoms (25% vs 12%; p=0.004) than Dutch healthy reference samples. Chronic pain and severe fatigue co-occurred in 34% and in combination with depressive symptoms in 16% of the participants. Severity of fatigue was associated with depressive symptoms (OR 3.38; p<0.01). Chronic pain and fatigue were not associated with limitations in daily functioning.INTERPRETATION These findings suggest that adults with SBCP are severely affected by chronic pain, fatigue, and depressive symptoms, in addition to their spastic paresis.Pain and fatigue are common symptoms in adults with cerebral palsy (CP). [1][2][3][4] In CP, pain often begins at an early age and frequently becomes a chronic condition. 1,2,4 At least 67% of adults with CP in the USA experience chronic pain. 4 Fatigue is a well-known symptom in various neurological disorders, but is rarely studied in CP. 3,5,6 In a Norwegian study 3,7 the prevalence of fatigue was higher in adults with CP (30%) than in the general population (22%).Pain and fatigue are also common symptoms in the general population 8,9 and often co-occur, especially when they are severe. 8 In the general population, pain and fatigue have been shown to have an impact on daily activities 9 and to be associated with psychological distress, negative mood, and depression. 8,10 For the impact of pain and fatigue on daily activities in CP, Schwartz et al. 4 found that adults with CP tended to report only minor interference from pain on their activity level and social or work functioning, whereas Jahnsen et al.2,3 demonstrated that one-third of their CP sample reported a moderate to extreme impact of pain in daily life and an association of fatigue with limitations due to physical health problems. In a study among children with CP, pain and fatigue were associated with lowered school functioning and, in some cases, partly explained the association between severity of CP and performance at school. 5 Very little has been reported about depression in adults with CP. Jensen et al. 11 found that in adults with CP experiencing chronic pain at least 42% had depressive symp...

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Section: %mentioning

confidence: 79%

“…[1][2][3][4] In CP, pain often begins at an early age and frequently becomes a chronic condition. 1,2,4 At least 67% of adults with CP in the USA experience chronic pain. 4 Fatigue is a well-known symptom in various neurological disorders, but is rarely studied in CP.…”

mentioning

confidence: 99%

Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy

Slot

Nieuwenhuijsen

Berg-Emons

et al. 2012

Develop Med Child Neuro

186

153

View full text Add to dashboard Cite

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“…However, only a few recent studies by researchers like Nieuwenhuijsen et al 55,56) and Satonaka, et al [19][20][21][22] have reported on nonathletic adults with cerebral palsy rated to GMFCS level III or IV. Somehow, the fitness levels of this population are neglected after they complete their childhood rehabilitation programs 57) .…”

Section: History Of Research On Aerobic Fitness In Individuals With Cmentioning

confidence: 99%

“…This has been attributed to lower physical activity levels in the former population 25,37) . This trend of less physical activity may begin after completion of childhood rehabilitation programs or leaving school 55,57) . Individuals with cerebral palsy often have difficulty in finding jobs, and their physical activity and aerobic fitness levels may decline in adulthood.…”

Section: Aerobic Fitness May Be Improved By Physical Activity Other Tmentioning

confidence: 99%

Aerobic fitness and lifestyle with non-exercise physical activity in adults with cerebral palsy

Sato

Suzuki

2018

JPFSM

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This review article explores how to keep individuals with cerebral palsy healthy all their life. Many of these individuals live very sedentary lives, remaining at home after leaving school or completing childhood rehabilitation programs. Aerobic fitness in such individuals is known to decline rapidly in adulthood. Therefore, in order to keep aerobic fitness from falling into decline, the physical activities and aerobic fitness of these individuals must be appropriately and rigorously managed. The authors recently showed the validity of submaximal exercise testing and provided some findings that would contribute to improving aerobic fitness in these individuals. These studies indicate that even NEAT (Non-Exercise Activity Thermogenesis) or brief and frequent daily physical activity, rather than just conventional exercises or sports, could improve aerobic fitness. However, other studies recommend that these individuals engage in exercises or sports that they may not be interested in or that require facilities or occasions that are inaccessible. In conclusion, in addition to a standard exercise regimen, realistic and tangible interventions for daily physical activities need to be made available to individuals with cerebral palsy.

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“…However, a number of specific practices are evidenced for children and young people with cerebral palsies (CP). [16][17][18][19][20][21][22][23][24][25] These were chosen for examination in this audit Magnetic resonance imaging (MRI) of the brain MRI brain scans can help identify the underlying pathoaetiology of CP in children and predict important aspects of the clinical course. [19][20][21] Hip surveillance Hip migration is part of the natural history of CP, increasing with increasing functional impairment, frequently progressing if untreated to total hip dislocation, which may cause pain, limit quality of life, and complicate the delivery of care.…”

Section: Hip Surveillancementioning

confidence: 99%

Variation in health care for children and young people with cerebral palsies: a retrospective multicentre audit study

Horridge

Tennant

Balu

et al. 2015

Develop Med Child Neuro

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IMDIndex and within the UK. [4][5][6][7][8][9][10][11][12] Applying and maintaining such standards, however, requires the collection and dissemination of high-quality data on existing best practice. The UK currently has no national data collection system to produce comprehensive population-based evidence of this kind. At present, such information can only be assembled by examining the provision and variation in care for disabled children with individual conditions where population-based data are already available.Cerebral palsies (CP) are the most common cause of physical disability in early childhood, affecting 2 to 3 per 1000 live births. 13 They are a group of permanent disorders of movement and posture resulting from non-progressive disturbances in the developing brain that cause activity limitation. These motor disorders are often accompanied by further disturbances of sensation, perception, cognition, communication, and behaviour, as well as by epilepsies, and by secondary musculoskeletal problems.14 The wideranging profile of disabilities arising from CP means they can serve as excellent exemplars of the range of disabling conditions that affect children and young people in general.The aim of this retrospective audit of medical records was to explore and describe the provision and variations in care over time, between districts and by socio-economic status (SES), for children and young people with CP in a defined geographical area of the UK. METHOD PopulationThe North of England Collaborative Cerebral Palsy Survey (NECCPS), established in 1991, is a consented population-based register of children and young people with CP

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Health issues in young adults with cerebral palsy: Towards a life-span perspective

Cited by 114 publications

References 33 publications

Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy

Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy

Aerobic fitness and lifestyle with non-exercise physical activity in adults with cerebral palsy

Variation in health care for children and young people with cerebral palsies: a retrospective multicentre audit study

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