Epidemiology of Cerebral Palsy in Adulthood: A Systematic Review and Meta-analysis of the Most Frequently Studied Outcomes

Abstract

To describe the epidemiology of health status, impairments, activities and participation in adults with cerebral palsy (CP). Data Sources: Embase, MEDLINE, Web of Science, PsycINFO, Cumulative Index to Nursing and Allied Health, Cochrane, and Google Scholar were searched for 3 themes ("cerebral palsy," "adult," and "outcome assessment") in literature published between January 2000 and December 2018. Study Selection: Full-article peer-reviewed English journal articles on descriptive, observational, or experimental studies describing the most studied outcomes in adults with CP (n!25, age!18y) were included. Studies were included in the analyses if frequently studied outcomes were described in at least 3 studies using similar methods of assessment. Data Extraction: Data were extracted independently by 2 authors from 65 articles (total NZ28,429) using a standardized score sheet. Data Synthesis: Meta-analyses revealed that overall, on average 65.1% (95% confidence interval [CI], 55.1-74.5) of adults with CP experienced pain, 57.9% (95% CI, 51.1-64.6) were ambulant, 65.5% (95% CI, 61.2-69.7) had little or no limitation in manual ability, 18.2% (95% CI, 10.6-27.2) had tertiary education, 39.2% (95% CI, 31.5;47.1) were employed, and 29.3% (95% CI, 9.0-55.3) lived independently. In adults without intellectual disability, proportions of individuals who were ambulant (72.6% [95% CI, 58.8-84.5]) and lived independently (90.0% [95% CI, 83.8-94.9]) were higher (PZ.014 and P<.01, respectively). The Fatigue Severity Scale score was 4.1 (95% CI, 3.8-4.4). Epilepsy (28.8% [95% CI,) and asthma (28.3% [95% CI, 18.7-38.9]) were especially prevalent comorbidities. Conclusions: The present systematic review and meta-analysis on the epidemiology of adults with CP provided state-of-the-art knowledge on the most frequently studied outcomes. On average, adults with CP are fatigued, and a majority experience pain, are ambulant, and have little or no difficulty with manual ability. On average, 40% are employed and 30% live independently. More uniformity in assessment and reports is advised to improve knowledge on epidemiology and gain insight in more outcomes.

Adults with Cerebral Palsy Require Ongoing Neurologic Care: A Systematic Review

“…12,58,59 Estimates of fatigue prevalence range from 64% to nearly all adults with CP. 5,12,56 Chronic fatigue correlates with lower life satisfaction and significant worry in this population. 57,60 The factors contributing to chronic fatigue in CP are unclear, and the methods by which this fatigue can be optimally addressed are similarly undefined.…”

“…5,68 Numerous studies find that adults with CP experience significantly more pain than those without CP. 5 However, the majority of adults with CP and pain do not seek pain treatment. 69 As a result, there is a huge unmet need for pain relief among this population.…”

“…New symptoms with possible neurologic etiologies are common in adults with CP, such as chronic pain or chronic fatigue. 5 These phenomena necessitate detailed neurologic surveillance, particularly as new motor impairments can be difficult to distinguish from long-standing impairments without rigorous tracking of the neurologic examination and neuromotor functional status.…”

Health service use among adults with cerebral palsy: a mixed methods systematic review protocol

“…[11][12][13][14] Studies have also reported increased fatigue, incidence of falls, pain and a decline in mobility, as people with CP move into adulthood. [15][16][17] Therefore, adults with CP may require extensive health services. The National Institute for Health and Care Excellence (NICE) guideline for CP in adults has recommended continuity of care for adults with CP, tailored to their needs.…”

“…Previous reviews have focussed on the epidemiology of CP in adults, quality of life, pain and effectiveness of interventions used by adults with CP. 16 30–32 There is a need for a theory informed review with broader perspectives on health service use among adults with CP, rather than focussing on the effectiveness of any specific intervention. Such a review would potentially inform health service used by adults with CP, direct research efforts and identify areas of challenges faced by adults with CP.…”