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Being adults with cerebral palsy: results of a multicenter Italian study on quality of life and participation

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Abstract

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.

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Acknowledgements

We are thankful to Francis Coburn for English writing assistance and Manuela Rosiglioni for collaboration in recovering medical records.

Funding

Funding was received for this work for organization of meetings and working groups for the identification of evidence-based protocols of assessment for the different form of CP and creation and development of a specific database for data collection. (Fondazione Pierfranco e luisa Mariani).

Author information

Authors and Affiliations

  1. Neurodevelopmental Unit, Fondazione IRCCS Istituto Neurologico C. Besta, Milan, Italy

    Emanuela Pagliano, Tiziana Casalino, Sara Mazzanti, Valeria Tessarollo, Elena Malinconico, Giovanni Baranello, Adriana Anderloni & Ermellina Fedrizzi

  2. Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy

    Elisa Bianchi

  3. U.O. di Neurologia e Psichiatria dell’Infanzia e dell’Adolescenza, ASST—Spedali Civili—Dipartimento di Scienze Cliniche e Sperimentali, Università degli Studi di Brescia, Brescia, Italy

    Elisa Fazzi, Andrea Rossi, Jessica Galli, Elvira Dusi & Leonora Meschini

  4. UOSD Medicina Fisica e Riabilitativa Pediatrica, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano, Milan, Italy

    Odoardo Picciolini & Andrea Frigerio

  5. Dipartimento Specialità Mediche, S.C. Recupero e Rieducazione Funzionale, ASL 3 Genovese, Genoa, Italy

    Francesca Gallino & Ambra Villani

  6. AUSL Toscana UO Riabilitazione Funzionale Presidio D’Annunzio, Florence, Italy

    Nerina Landi & Luisa Roberti

  7. UO Neuropsichiatria Infantile, Seconda Università degli Studi di Napoli, Naples, Italy

    Roberto Militerni

  8. Centro di Riferimento Provinciale Paralisi Cerebrali Infantili U.O.C. TSMREE, ASL di Viterbo, Viterbo, Italy

    Carlo Di Brina

  9. Azienda Ospedaliero, Universitaria Città della Salute e della Scienza di Torino, S.C.D.U. Di NPI Dir. Prof. B. Vitiello, Torino, Italy

    Lorella Tornetta & Michela Martielli

  10. SC NPI ASL CN1, sede di Fossano Direttore Dott. Franco Fioretto, Fossano, Italy

    Margherita Brizio

  11. IRCCS S. Maria Nascente Fondazione Don Carlo Gnocchi Milano, Milan, Italy

    Marina Rodocanachi

  12. Fondazione Pierfranco e Luisa Mariani, Milan, Italy

    Ermellina Fedrizzi

Authors
  1. Emanuela Pagliano
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  2. Tiziana Casalino
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  3. Sara Mazzanti
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  4. Elisa Bianchi
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  5. Elisa Fazzi
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  6. Odoardo Picciolini
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  7. Andrea Frigerio
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  8. Andrea Rossi
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  9. Francesca Gallino
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  10. Ambra Villani
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  11. Nerina Landi
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  12. Luisa Roberti
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  13. Roberto Militerni
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  14. Carlo Di Brina
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  15. Lorella Tornetta
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  16. Michela Martielli
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  17. Margherita Brizio
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  18. Marina Rodocanachi
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  19. Valeria Tessarollo
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  20. Jessica Galli
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  21. Elvira Dusi
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  22. Leonora Meschini
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  23. Elena Malinconico
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  24. Giovanni Baranello
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  25. Adriana Anderloni
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  26. Ermellina Fedrizzi
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Corresponding author

Correspondence to Emanuela Pagliano.

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We confirm that we have given due consideration to the protection of intellectual property associated with this work and that there are no impediments to publication, including the timing of publication, with respect to intellectual property. In so doing we confirm that we have followed the regulations of our institutions concerning intellectual property. We confirm that we obtained consent by all the participants. We confirm that the manuscript has been read and approved by all named authors.

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Pagliano, E., Casalino, T., Mazzanti, S. et al. Being adults with cerebral palsy: results of a multicenter Italian study on quality of life and participation. Neurol Sci 42, 4543–4550 (2021). https://doi.org/10.1007/s10072-021-05063-y

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  • DOI: https://doi.org/10.1007/s10072-021-05063-y

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