TY - JOUR
T1 - Being adults with cerebral palsy: results of a multicenter Italian study on quality of life and participation
AU - Pagliano, Emanuela
AU - Casalino, Tiziana
AU - Mazzanti, Sara
AU - Bianchi, Elisa
AU - Fazzi, Elisa
AU - Picciolini, Odoardo
AU - Frigerio, Andrea
AU - Rossi, Andrea
AU - Gallino, Francesca
AU - Villani, Ambra
AU - Landi, Nerina
AU - Roberti, Luisa
AU - Militerni, Roberto
AU - Di Brina, Carlo
AU - Tornetta, Lorella
AU - Martielli, Michela
AU - Brizio, Margherita
AU - Rodocanachi, Marina
AU - Tessarollo, Valeria
AU - Galli, Jessica
AU - Dusi, Elvira
AU - Meschini, Leonora
AU - Malinconico, Elena
AU - Baranello, Giovanni
AU - Anderloni, Adriana
AU - Fedrizzi, Ermellina
N1 - Publisher Copyright:
© 2021, Fondazione Società Italiana di Neurologia.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/11
Y1 - 2021/11
N2 - Cerebral palsy (CP) is still the most common cause of disability developing in infancy. How such a complex disorder affects adult life raises important questions on the critical issues to consider and the most appropriate care pathway right from early childhood. We conducted a multicenter study on a sample of 109 individuals with CP followed up from infancy and recalled for an assessment at ages ranging between 18 and 50 years (mean age 26 years). Semi-structured interviews and specific questionnaires (SF36, LIFE-H and Hollingshead Index) were conducted to assess general psychological state, quality of life, and socio-economic conditions. Our findings showed a globally positive perception of quality of life, albeit with lower scores for physical than for mental health. Our cases generally showed good scores on participation scales, though those with more severe forms scored lower on parameters such as mobility, autonomy, and self-care. These findings were investigated in more depth in interviews, in which our participants painted a picture showing that gradual improvements have been made in several aspects over the years, in the academic attainment and employment, for instance. On the downside, our sample reported persistent limitations on autonomy in daily life. As for the more profound psychological domain, there was evidence of suffering due to isolation and relational difficulties in most cases that had not emerged from the questionnaires. Our data have possible implications for the management of CP during childhood, suggesting the need to avoid an exclusive focus on motor function goals, and to promote strategies to facilitate communication, participation, autonomy, and social relations.
AB - Cerebral palsy (CP) is still the most common cause of disability developing in infancy. How such a complex disorder affects adult life raises important questions on the critical issues to consider and the most appropriate care pathway right from early childhood. We conducted a multicenter study on a sample of 109 individuals with CP followed up from infancy and recalled for an assessment at ages ranging between 18 and 50 years (mean age 26 years). Semi-structured interviews and specific questionnaires (SF36, LIFE-H and Hollingshead Index) were conducted to assess general psychological state, quality of life, and socio-economic conditions. Our findings showed a globally positive perception of quality of life, albeit with lower scores for physical than for mental health. Our cases generally showed good scores on participation scales, though those with more severe forms scored lower on parameters such as mobility, autonomy, and self-care. These findings were investigated in more depth in interviews, in which our participants painted a picture showing that gradual improvements have been made in several aspects over the years, in the academic attainment and employment, for instance. On the downside, our sample reported persistent limitations on autonomy in daily life. As for the more profound psychological domain, there was evidence of suffering due to isolation and relational difficulties in most cases that had not emerged from the questionnaires. Our data have possible implications for the management of CP during childhood, suggesting the need to avoid an exclusive focus on motor function goals, and to promote strategies to facilitate communication, participation, autonomy, and social relations.
KW - Adulthood
KW - Cerebral palsy
KW - Quality of life and participation
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U2 - 10.1007/s10072-021-05063-y
DO - 10.1007/s10072-021-05063-y
M3 - Article
AN - SCOPUS:85101588392
JO - Neurological Sciences
JF - Neurological Sciences
SN - 1590-1874
ER -