Impairments and comorbidities in adults with cerebral palsy and spina bifida: a meta-analysis

IntroductionAging with a childhood-onset disability, such as cerebral palsy (CP), spina bifida (SB), and muscular diseases (MD), comes along with significant impairments and comorbidities. Despite the increasing evidence an overall picture is lacking. This study aimed to review the literature about adults with CP/SB/MD and impairments and comorbidities to perform a meta-analysis.Materials and methodsEmbase, PubMed, Cinahl, and Google Scholar were searched (2000–2020). Search terms included adults with one of the aforementioned disabilities combined with impairments and comorbidities. If specific impairments or comorbidities were reported by at least four studies, these were included in the study. Pooled prevalence (95% Confidence Interval) of impairments/comorbidities were calculated.ResultsThe search yielded 7,054 studies of which 95 were included in the meta-analysis (64 CP, 31 SB, 0 MD). In total estimates were calculated for 26 (CP) and 11 (SB) outcomes. In adults with CP, pain [56.4% (95%CI 48.8–63.8)], deformities [44.2% (95%CI 12.9–78.4)], intellectual disability [37.2% (95%CI 26.7–48.3)], and fatigue [36.9% (95%CI 24.6–50.1)] were most prevalent; renal disease [3.0% (95%CI 2.1–4.2)] and stroke/rheumatic diseases {4.8% (95%CI 3.4–6.5; 4.8% (95%CI 1.5–9.9)] respectively} were least prevalent. For adults with SB, bladder incontinence [60.0% (95%CI 50.5–69.2)], bowel incontinence [49.2% (95%CI 34.5–64.0)], pain [44.1% (95%CI 27.4–61.5)], and sleeping problems [30.3% (95%CI 4.7–65.8)] were most prevalent; diabetes [4.8% (95%CI 2.8–7.3)] and renal disease [8.7% (95%CI 2.0–19.9)] were least prevalent. The included studies showed large heterogeneity.ConclusionsMore research is needed to study health issues in adults with MD. Adults with CP or SB deal with a variety of health issues. More attention for the mental health of these adults is needed. There also is a need for accessible and adequate screening, preventive measures and clinical follow-up

Layers of Disability Terminology Experiences of People with Disabilities and their Relatives: An Analysis of Dutch Newspapers between 1950–2020

Despite the current terminology debate, little is known about the terminology experiences of people with disabilities and their relatives. Therefore, their interviews and letters to editors about disability terminology experiences published in Dutch newspapers between 1950 and 2020 were examined using inductive qualitative analysis. Three themes were derived. Contributors (1) objected to the use of particular terms and explained why a change in disability terminology was required; (2) argued that a change in disability terminology was viable; and (3) opposed proposed terminological changes. Contributors stated that derogatory and outmoded terms did not accurately depict the abilities of people with disabilities, resulting in stigmatisation and exclusion. Few contributors addressed a cross-disability perspective, and there was no mention of disability policy in the terminology debate. Meaningful associations between disability terminology experiences and the visibility and onset of the disability could be established. The newspaper contributions reflected the growing self-awareness of people with disabilities and their relatives

Autonomy in participation in cerebral palsy from childhood to adulthood

Aim To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (pIndividuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V.</p

Effect evaluation of a vocational rehabilitation program for young adults with chronic physical conditions at risk for unemployment:A controlled clinical trial

Background: The work participation of young adults with chronic physical conditions lag behind compared to healthy age-mates. ‘At Work’ is a vocational rehabilitation intervention provided by occupational therapists, that supports them for entering the competitive labour market after graduating post-secondary education. Aim: To evaluate the effects of ‘At Work’ on self-efficacy, work-ability and employment status as compared to usual care. Materials and methods: In total, 88 young adults were included in a multicentre controlled trial; 49 entered ‘At Work’, 39 received usual care. GEE-analyses were applied. Results:Scores on all outcome measures substantially improved over time in the intervention group, but no significant effects were found as compared to the control group. The effect on general self-efficacy showed a positive trend in favour of the intervention group. Conclusions and significance: Unlike previous study results pointing to positive outcomes of At Work’, the current study did not support the effectiveness of this program on work-related self-efficacy, work-ability and paid employment, as compared to usual care. Yet, we did find an indication for positive intervention effect on general self-efficacy, which is known to be an important capacity to achieve social participation.</p

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

Objective: To obtain better insight into the health issues of young adults with cerebral palsy. Design: Cross-sectional. Subjects: Two data sources were used: 54 adults with cerebral palsy (age range 25-36 years) and 48 physicians (members of the Netherlands Society of Physical and Rehabilitation Medicine). Methods: Adults with cerebral palsy participated in a physical examination and a semi-structured interview assessing several health issues and utilization of healthcare. Rehabilitation physicians completed a questionnaire on impairments they recognized as being related to cerebral palsy. Results: In the patient sample, pain (59%) and joint deformities (19-57%) were observed most frequently. Evidence of a decrease in the utilization of healthcare services at adult age emerged. Lower gross motor function and cognitive level appeared to be determinants of motor and speech impairments and of the utilization of 3 allied healthcare services. Rehabilitation physicians reported pain (88%), joint deformities (86%) and fatigue (76%) as being cerebral palsy-related health problems in adults. Conclusion: Based on the high prevalence of pain and joint deformities and the decrease in the utilization of healthcare services, systematic follow-up in adults with cerebral palsy seems warranted. Cerebral palsy needs to be considered as a life-long condition, requiring a life-span perspective in order to better organize optimal care

Autonomy in participation in cerebral palsy from childhood to adulthood

Aim To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. Method Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12-34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p Individuals with cerebral palsy without intellectual disability achieved autonomy in most participation domains. Regarding intimate relationships, they continued to have less experience compared to age-matched references. Development of autonomy was less favourable for individuals in Gross Motor Function Classification System levels III to V