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

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.

Multisite trial comparing the efficacy of constraint-induced movement therapy with that of bimanual intensive training in children with hemiplegic cerebral palsy: postintervention results.

OBJECTIVE: The aim of this study was to compare the effects of modified constraint-induced movement therapy (mCIMT; restraint of unaffected limb combined with unimanual intensive rehabilitation) with those of a bimanual intensive rehabilitation treatment (IRP) in children with hemiplegic cerebral palsy after a 10-wk practice vs. standard treatment (ST). DESIGN: This study is a multicenter, cluster-randomized controlled clinical trial of tested groups of children with hemiplegic cerebral palsy treated using mCIMT, IRP, or ST. For 10 wks, in mCIMT and IRP, the intensive practice lasted 3 hrs/day, 7 days/wk; in ST, 1-hr sessions twice a week were provided. The primary outcomes are upper limb/hand function (Quality of Upper Extremity Skills Test) and activities of daily living (Besta Scale), which are assessed before and after treatment. One hundred five patients were recruited, 39 to the mCIMT group, 33 to the IRP group, and 33 to the ST group. RESULTS: IRP and mCIMT significantly improved paretic hand function both in the Quality of Upper Extremity Skills Test and in the Besta Scale, whereas ST did not. mCIMT improved grasp more than IRP did (P < 0.01), whereas bimanual spontaneous use in play increased more with IRP (P = 0.0005). Activities of daily living in 2- to 6-yr-olds improved more with IRP (P < 0.0001) than with mCIMT (P = 0.011). Unaffected limb improved more from bimanual practice (IRP; P = 0.02). CONCLUSIONS: More advantages resulted from intensive practice than in the standard one, in mCIMT for grasp and in IRP for bimanual spontaneous use and activities of daily living in younger children.