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

Smith, Sabrina; Gannotti, Mary; Hurvitz, Edward A.; Jensen, Frances E.; Krach, Linda E.; Kruer, Michael C.; Msall, Michael E.; Noritz, Garey; Rajan, Deepa; Aravamuthan, Bhooma R.

doi:10.1002/ana.26040

Cited by 44 publications

(33 citation statements)

References 104 publications

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“…Because of the increasing impact of CP, (7,38,39) healthcare utilization increases with age (40). Nevertheless, health needs often remain unmet (41)(42)(43). Adults in this study had mixed experiences with healthcare and support services.…”

Section: Discussionmentioning

confidence: 96%

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

et al. 2021

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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.

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Section: Discussionmentioning

confidence: 96%

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship

et al. 2021

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“…These advancements decisively contributed to the awareness of genetic aetiologies as relevant differential diagnosis of neurological phenotypes with early onset. On the other hand, the awareness of the chronic nature of neurodevelopmental disorders and of their possible evolution in the adulthood is still poor (3). As a result, the recognition and management of the same conditions in the adult population still face a longer way to go.…”

Section: Discussionmentioning

confidence: 99%

“…In the eld of neurodevelopmental disorders, clinical research is traditionally focused on the pediatric population (3). Despite the recent advances, the diagnosis and management of adult patients with these conditions still represents an un lled gap.…”

Section: Introductionmentioning

confidence: 99%

Untangling Neurodevelopmental Disorders in the Adulthood: A Movement Disorder is the Clue.

Indelicato

Zech

Amprosi

et al. 2021

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BackgroundThe genetic landscape of neurodevelopmental disorders is constantly expanding and children with early-onset neurological phenotypes increasingly receive a genetic diagnosis. Nonetheless, the awareness of the chronic course of these conditions, and consequently their recognition and management in the adult population, is still limited. ResultsHerein, we describe four patients with rare neurodevelopmental disorders (SON, ZMYND11, DNMT1 and YY1-related diseases), who received a genetic allocation only in the adulthood. All these patients had an early developmental delay and displayed a movement disorder (dystonia/ataxia/tremor) which manifested for the first time, or worsened, in the adulthood, prompting the referral to a neurologist. The syndromic nature of the phenotype led eventually to the genetic testing. We report previously unrecognized features and highlight the peculiarities of the adult presentation of four neurodevelopmental disorders. ConclusionsThis report expands the current knowledge on four rare neurodevelopmental disorders (SON, ZMYND11, DNMT1 and YY1), which was mainly based on reports from paediatric cases. This case series emphasize the importance of a tight neurological surveillance extending beyond the childhood.

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“…I n this issue, Smith and colleagues review the predisposition of patients with cerebral palsy (CP) to additional, new neurological problems as they age and the need for skilled neurological care throughout their lifetime to address these issues and provide optimal care. 1 This thoughtful approach offers the chance to reflect on the history of the field, and the prodigious opportunities neurologists have to improve the care of adults with CP. The first descriptions of CP date back to the mid-1800s.…”

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confidence: 99%