Health-related quality of life of mothers of children and adolescents with myelomeningocele

Myelomeningocele (MM) is a disease that causes motor and sensitive disabilities. Health problems associated to this condition may lead mothers the main caregivers to situations of stress, anxiety and depression that may impair their health-related quality of life (HRQL). The aim of this study was to assess the HRQL of mothers of children and adolescents with MM in comparison to mothers of healthy controls and to observe its association with clinical and demographic variables of patients and mothers. The study group consisted of 50 mothers of children and adolescents with MM under 18 years of age in treatment at the Associação de Assistência à Criança Deficiente (AACD-MG). Mothers of healthy controls were matched by patients gender and age in the proportion of 2:1. Patients were grouped by level of neurological lesion and status of functional ambulation. Clinical and demographic data were obtained by interview and medical records. The HRQL of mothers was assessed by interview through the Medical Outcomes Study 36-Item Short Form Health Survey (SF-36). SF-36 reliability was evaluated by Cronbach s alpha coefficient. The Beck Depression Inventory (BDI) was self-applied to assess depressive symptoms. SF-36 scores were compared between groups of mothers of patients with MM and controls (Mann-Whitney test). Effect sizes (ES) were calculated to measure the m agnitude of significant differences. Clinical and demographic variables were compared (Mann-Whitney and Kruskal-Wallis tests) and correlated (Spearman correlation coefficient) with SF-36 scores. Mothers median age was 35.9 years (study group) and 33.5 years (control group). The median age of children with MM was 6.0 years. Most of the group consisted of children (90.0%), females (58.0%) and patients with lower lumbar neurological lesion (50.0%), non-ambulators (44.0%). Cronbach s alpha ranged from 0.6 to 0.8 for the SF-36 domains and components. In comparison to mothers of healthy controls, mothers of children/adolescents with MM had significantly lower scores in the physical component and in three SF-36 domains: role limitations due to physical problems, global health and role limitations due to social problems (p0.8) in the following domains: role limitations due to physical problems and role limitations due to social problems. There was no difference in SF-36 scores according to patients level of neurological lesion and functional ambulation status (p>0.05). Among all patients and mothers clinical and demographic variables, patients gender (female), catheterization and presence of chronic disease in mothers were associated to impaired HRQL (p0,05). Dentre as variáveis demográficas e clínicas das mães e pacientes avaliadas, houve associação com prejuízo na QVRS das mães segundo, sexo do paciente (feminino), realização do cateterismo e presença de doença crônica nas mães (p<0,05). A intensidade de sintomas depressivos correlacionou-se com todos os domínios e componentes do SF-36, sendo a variável que mais se associou com os escores do SF-36 (p