Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele

Abstract

Myelomenigocele (MM) is the most common and disabling disorder of neural tube defects. It is associated to several health problems and to motor and sensitive disabilities. This condition may impair patient s health-related quality of life (HRQL). However, it is not established how different neurological lesion levels and functional ambulation influence HRQL. This study aimed at assessing the HRQL of children and adolescents with MM in comparison with healthy controls of the same age and according to the lesion level and functional ambulation. Patients with MM followed at AACDMG, aged 5 to 18 years, and healthy controls of the same age and sex were recruited for this study. Patients were classified according to the neurological lesion level (thoracic, upper lumbar, lower lumbar and sacral) and to functional ambulation (community ambulators, household ambulators, nonfunctional ambulators and non-ambulators). Clinical and demographic data were obtained by interview with caregivers and by information collected in medical records. The Child Health Questionnaire (CHQ-PF50) was self-administered to parents/proxies. Psychometric properties were assessed by data quality (rate of lost data, floor and ceiling effects) and reliability (item internal consistency and reliability of internal consistency). Patients scores were compared with controls and according to functional ambulation (Mann-Whitney test) and to neurological lesion level (Kruskal-Wallis test). Thirty participants in the study group and 60 in the control group answered the questionnaire. Patients mean age was 8.3 years. The rate of lost data was low (ranged from 0.0% to 10.0%). Ceiling effect was observed in 10 scales (ranged from 0.0% to 56.7%). In general, reliability was considered appropriate since the scale general health was the only one with low values of tem internal consistency (success rate of 60%) and internal consistency reliability (Cronbach s alpha of -0.37). Patients had lower scores in comparison to controls on 8 scales and on physical summary of CHQPF50 (p< 0.05). There was no difference among patients according to the neurologic lesion level and to the functional ambulation (p> 0.05). These results confirm physical and psychosocial impairment of HRQL of children and adolescents with MM, according to their proxies perspective, with similar findings among the different neurological lesion levels and functional ambulation. This study point to the need of a multidisciplinary approach to all patients, independently of lesion level or functional ability.