Quality of Life assessment among children and adolescents with Cerebral Palsy. An observational descriptive study in the city of Naples and its surroundings

Abstract

This study aims to assess the Quality of Life in children and adolescents with Cerebral Palsy in the city of Naples and its surroundings. We have tried to photograph the QoL of subjects with cronic pathology in a specific social context and historic moment, and, if possible, delegate the priority areas of intervention and the actions for QoL improvement to other studies. PedsQL 4.0- Generic Core ScaleTM was the main tool for the assessment of QoL in young subject with CP, which has been added to a personal data sheet. The sample has been stratified according to the severity of disease as reported by the Gross Motor Function Classification System (from level I to V, in order of increasing severity), to age group as reported by PedsQL questionnaire (8-12 years and 13-18 years) and finally by gender. The statistical analysis assesses the differences in the median values related to age, Physical Score, Psychosocial Score and Total Score, of all groups whose p value to the U Mann Whitney or Kruskal- Wallis test is less than 0.05. 27 patients, 13 males and 14 females, and their caregiver who are all mothers, were enrolled; of these 27 patients, 18 are between 8 and 12 years old and 9 are between 13 and 18 years old. 4 of these patients due to the presence of cognitive impairment were not able to answer the questionnaire, so only the information given by the caregivers were taken into account. Referring to GMFCS, 11 patients are evalueted as level I, 5 patients as level II, 1 as III, 3 patients as IV and 7 patients as V. Patients come from 5 Physical Rehabilitation centers in Naples and its surrounding. Significant differences were found between patients from 8- 12 years and 13-18 years, where the adoloscents reported a drastic drop of Quality of Life (p= 0.22 on Total Score). Furthermore, the initial hypothesis about the inverse proportionality between decrease in QoL and the severity of patology (evalueted with GMFCS) is confirmed, both from what reported by patients and their caregivers (p= 0.014 in Total Score for both groups). Finally it was found that the caregivers of patients with low severity of patologhy (level I and II) understimate the Quality of Life of their children, both in Physical funcitioning (p= 0.02) and in the Total Score (p= 0.04) The international literature agrees with result shown by this work and this allows us to ask question that can be shared even beyond the national borders. Moreover, this small sample study can be a starting point for a future multicentric survey on regional territories, in order to allow an assessment of the Quality of Health assistance and to found any discrepancies.