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.

Sense of meaning influences mental functioning in chronic renal patients.

In this preliminary study, we examined whether aspects of spiritual well-being accounted for mental and physical health-related quality of life in 68 patients with end-stage renal disease, when controlling for age, type of treatment, physical symptoms, and worries. Hierarchical multiple regressions showed that meaning was associated with better mental health, while worry and physical symptoms also accounted for poor mental health. Faith and peace did not contribute to mental health. Older age, type of treatment (hemodialysis), and physical symptoms accounted for poor physical health. Our findings suggest that clinicians should include spiritual well-being in future interventions for end-stage renal disease patients.