Assessment of Functional Status and Quality of Life in Children with Spina Bifida

Abstract

Objective: The aim of this study was to determine functional status and QoL of children with spina bifida (SB) by using the Functional Independence Measure for Children (WeeFIM) and the Child Health Questionnaire PF-50 (CHQPF-50) and to compare the functional status data of pediatric SB patients with those of healthy children. Material and Methods: Forty children with SB and 40 healthy children aged between 36 and 143 months were enrolled in the study. Both pediatric SB patients and healthy children were divided into three age groups: Group 1: 36-71 months, Group 2: 72-107 months, and Group 3: 108-143 months. The WeeFIM and CHQPF-50 were completed for children with SB, whereas the WeeFIM was completed only for healthy children. Results: In both assessments, the total score and subscale scores were lower than normal values in children with SB. However, improvement was found in self-care; communication; social, emotional, and mental status; and family factors with increasing age. On the other hand, there was no improvement in physical score, transfer, mobility, and sphincter control with increasing age. Functional status of children with SB was significantly lower compared to healthy children. Conclusion: There was progress in self-care, communication, family factors, and social, emotional and mental status in children with SB with increasing age.

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

“…SB is the most complex of the congenital disorders that infants are expected to survive (Phillips et al., 2017); approximately 85% of individuals with SB are expected to survive to adulthood owing to medical advances (Spina Bifida Association, 2018). However, despite the advances in medical care and treatment, patients with SB continue to experience a range of functional impairments in areas such as walking and voluntary bowel and bladder control (Şahi̇n et al., 2014).…”

Qualidade de vida de crianças com mielomeningocele atendidas no Hospital Estadual de Sumaré

“…A forma com que ela é recebida determina a forma como se desenvolverá tanto fisicamente como psicologicamente. Não é tarefa fácil, pois com o nascimento da criança, a família experimenta a perda do filho perfeito, os pais e os demais membros da família devem se adaptar lentamente à situação ou experimentar a dor e ansiedade esmagadoras (88) .…”

“…Em relação aos sentimentos dos pais de recém-nascidos com deficiência, percebe-se uma apreensão pelas condições de nascimento do filho, confirmado pelos sentimentos de desesperança, tristeza e medo (88) .…”