Dataset related to article "BEING ADULTS WITH CEREBRAL PALSY: RESULTS OF A MULTICENTER ITALIAN STUDY ON QUALITY OF LIFE AND PARTICIPATION"
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Pagliano, Emanuela1
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Casalino. Tiziana1
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Mazzanti, Sara1
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Baranello, Giovanni1
- Tessarollo, Valeria1
- Anderloni, Adriana1
- Malinconico, Elena1
- Bianchi, Elisa2
- Fazzi, Elisa3
- Rossi, Andrea3
- Picciolini, Odoardo4
- Frigerio, Andrea4
- Gallino, Francesca5
- Villani, Ambra5
- Landi, Nerina6
- Roberti, Luisa6
- Militerni, Roberto7
- Di Brina, Carlo8
- Tornetta, Lorella9
- Martielli, Michela9
- Brizio, Margherita10
- Rodocanachi, Marina11
- Galli, Jessica3
- Dusi, Elvira3
- Meschini, Leonora3
- Fedrizzi, Ermellina12
- 1. Fondazione IRCCS Istituto Neurologico Carlo Besta
- 2. Istituto di Ricerche Farmacologiche Mario Negri IRCCS
- 3. Dipartimento di Scienze Cliniche e Sperimentali, Università degli Studi di Brescia
- 4. a, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico Milano
- 5. Dipartimento Specialità Mediche, S.C. Recupero e Rieducazione Funzionale
- 6. AUSL Toscana UO Riabilitazione Funzionale Presidio D'Annunzio, Florence
- 7. UO Neuropsichiatria Infantile, Seconda Università degli Studi di Napoli
- 8. Centro di Riferimento Provinciale Paralisi Cerebrali Infantili U.O.C. TSMREE, ASL di Viterbo
- 9. Azienda Ospedaliero, Universitaria Città della Salute e della Scienza di Torino
- 10. SC NPI ASL CN1, sede di Fossano
- 11. IRCCS S. Maria Nascente Fondazione Don Carlo Gnocchi Milano
- 12. Fondazione Pierfranco e Luisa Mariani
Description
For each participant, we collected the following:
– Principal clinical details.
– Level of severity (I best–V worst) according to the Gross Motor Function Classification System (GMFCS) Manual Ability Classification System (MACS) , the Communication Function Classification System (CFCS).
– Neuroradiological documentation classified in accordance with the Surveillance of Cerebral Palsy in Europe working group
After receiving written informed consent, participants completed the following protocol:
– Specific questionnaires to assess: (a) Quality of life: the SF-36 (b) Participation: LIFE-H (c) Socio-economic status (SES, Hollingshead index
– A semi-structured interview based on parameters agreed between the various centers and designed to obtain information concerning(a) General state of health and aspects of daily life relating to
their occupation, free time, and autonomy; (b) Affective relations and capacity for self-observation of
their inner world, investigating emotions, affections, and feelings, such as anger, sadness, and happiness
Notes
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Additional details
Related works
- Is supplement to
- Journal article: 10.1007/S10072-021-05063-Y. (DOI)