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

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process.Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis.Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44-79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of "meanings of citizenship." The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively.Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship