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. 2019 Feb;61(2):194-203.
doi: 10.1111/dmcn.14004. Epub 2018 Sep 6.

Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study

Marloes van Gorp  1   2 , Leontien Van Wely  2 , Annet J Dallmeijer  2 , Vincent de Groot  2 , Marjolijn Ketelaar  3 , Marij E Roebroeck  1   4 ; Perrin-Decade study group
Affiliations

Long-term course of difficulty in participation of individuals with cerebral palsy aged 16 to 34 years: a prospective cohort study

Marloes van Gorp et al. Dev Med Child Neurol. 2019 Feb.

Abstract
in English, Spanish, Portuguese

Aim: To determine the long-term course of difficulty in participation of individuals with cerebral palsy (CP) without intellectual disability between 16 years and 34 years of age.

Method: One hundred and fifty-one individuals with CP aged 16 to 20 years were included (63% male, 37% female; Gross Motor Function Classification System [GMFCS] levels I-IV; without intellectual disability). The Assessment of Life Habits questionnaire 3.0 general short form was used up to three times biennially and at 13-year follow-up (13-year follow-up: n=98). Scores (range 0-10) reflect difficulty and assistance in participation in housing, education and employment, interpersonal relationships, recreation, community life, and responsibilities. Multilevel models were used to determine the course of difficulty in participation by GMFCS level.

Results: Despite high average participation levels, 41% to 95% of adolescents and young adults with CP experienced difficulty. Difficulty in participation in housing and interpersonal relationships increased from age 16 years onwards and in most other life areas in the mid- and late 20s. In adolescents in GMFCS levels III and IV, participation in recreation and community life improved up to age 23 years.

Interpretation: Individuals with CP experience increasing difficulties in participation in their mid- and late 20s. Clinicians should systematically check for participation difficulties in young adults with CP and offer timely personalized treatment.

What this paper adds: Many individuals with cerebral palsy (CP) aged 16 to 34 years experience difficulty in participation. Difficulty in participation increases in the mid- and late 20s for individuals with CP. Participation in recreation/community life improves before age 23 years for those in Gross Motor Function Classification System levels III and IV.

Objetivo: Determinar el curso de dificultad a largo plazo en la participación de personas con parálisis cerebral (PC) sin discapacidad intelectual entre los 16 y los 34 años de edad.

Método: Se incluyeron 151 con PC de 16 años a 20 años (63% hombres, 37% mujeres, sistema de clasificación de la función motora gruesa [GMFCS] niveles I‐IV, sin discapacidad intelectual). El cuestionario corto Evaluación general de hábitos de vida 3.0 (Assessment of Life Habits questionnaire 3.0 general short form) se usó hasta tres veces cada dos años y a los 13 años de seguimiento (13 años de seguimiento: n = 98). Los puntajes (rango 0‐10) reflejan dificultad y asistencia en la participación en vivienda, educación y empleo, relaciones interpersonales, recreación, vida comunitaria y responsabilidades. Se utilizaron modelos multinivel para determinar el curso de dificultad en la participación según el nivel de GMFCS.

Resultados: A pesar de los altos niveles de participación promedio, del 41 al 95% de los adolescentes y adultos jóvenes con PC experimentaron dificultades. La dificultad en la participación en la vivienda y las relaciones interpersonales aumentó desde la edad de 16 años en adelante, y en la mayoría de las otras áreas de la vida a mediados y finales de los 20 años. En adolescentes en los niveles III y IV de GMFCS, la participación en la recreación y la vida comunitaria mejoró hasta los 23 años.

Interpretación: Las personas con PC experimentan dificultades crecientes en la participación a mediados y finales de los 20 años. Los profesionales de la salud deben verificar sistemáticamente las dificultades de participación en adultos jóvenes con PC y ofrecer a tiempo un tratamiento personalizado.

Objetivo: Determinar o curso em longo prazo das dificuldades de participação em indivíduos com paralisia cerebral (PC) sem deficiência intelectual entre 16 e 34 anos de idade.

Método: Cento e cinquenta indivíduos com PC e idades entre 16 e 20 anos foram incluídos (63% do sexo masculino, 37% do sexo feminino; níveis do Sistema de Classificação da Função Motora Grossa [GMFCS] I–IV; sem deficiência intelectual. A Questionário de Avaliação dos Hábitos de Vida 3.0 formulário curto geral (Assessment of Life Habits questionnaire 3.0 general short form) foi usada até três vezes bianualmente em um acompanhamento de 13 anos (acompanhamento de 13 anos: n=98). Os escores (variando de 0–10) refletem dificuldade e assistência na participação em casa, educação e emprego, relações interpessoais, recreação, vida na comunidade e responsabilidades. Modelos multiníveis foram usados para determinar o curso das dificuldades de participação por nível GMFCS.

Resultados: Apesar da alta média de níveis de participação, 41 a 95 por cento dos adolescentes e adultos jovens com PC vivenciaram dificuldades. Dificuldades na participação em casa e nas relações interpessoais aumentaram da idade de 16 anos em diante, e na maior parte das áreas da vida entre a metade o fim da terceira década de vida. Em adolescentes de níveis GMFCS III e IV, a participação em recreação e vida em comunidade melhorou até a idade de 23 anos.

Interpretação: Indivíduos com PC vivenciam crescentes dificuldades na participação entre a metade e o fim da terceira década de vida. Clínicos devem sistematicamente checar dificuldades de participação em adultos jovens com PC, para oferecer tratamento personalizado oportunamente.

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Figures

Figure 1
Figure 1
Mean domain scores by Gross Motor Function Classification System (GMFCS) level and age intervals. Number of observations at subsequent age intervals for GMFCS level I: 73 (16–18y), 112 (19–22y), 49 (23–36y), 41 (27–34y); GMFCS level II: 10, 14, 9, 4; GMFCS level III: 8, 7, 6, 4; GMFCS level IV: 11, 15, 8, 8. Dashed line (diff) represents criterion on independent functioning without difficulty (score ≥8.89), while dotted line (dep) at score 5.56 represents criterion of dependent functioning (score <5.56). LIFE‐H, Assessment of Life Habits questionnaire 3.0 general short form.
Figure 2
Figure 2
Proportions of individuals with difficulty or needing human assistance by Gross Motor Function Classification System (GMFCS) level and age intervals. Number of observations at subsequent age intervals for GMFCS level I: 73 (16–18y), 112 (19–22y), 49 (23–36y), 41 (27–34y); GMFCS levels II and III: 18, 21, 15, 8; GMFCS level IV: 11, 15, 8, 8.
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