Self‐reported health‐related quality of life in children and adolescents with myelomeningocele

Abstract

The aim of the study was to investigate self‐reported health‐related quality of life (HRQOL) in children and adolescents with myelomeningocele (MMC) and to examine the impact of clinical impairments and limitations in activities of daily living (ADL). Fifty patients (28 females, 22 males) between 8 and 16 years of age (mean age 12y 1mo [SD 2y 4mo]) with MMC from three German paediatric centres and their mothers completed standardized measures on HRQOL (KINDL‐R) and limitations in ADL (Childhood Health Assessment Questionnaire). Lesion level was thoracic in nine, sacral in 25, and lumbosacral in 11 patients. Twenty‐one patients were community walkers, 17 were able to walk in the home, and seven used a wheelchair. Two‐thirds had health problems related to the central nervous system causing current difficulties (eight patients had a shunt, six had hydrocephalus, and 10 had a tethered cord). Patients in the study group reported diminished overall HRQOL compared with norm data, specifically in the dimensions of emotional well‐being, self‐esteem, and peer relations. Adolescents reported diminished HRQOL in the dimension of peer relations. Most medical parameters as well as limitations in ADL were not significantly associated with HRQOL. Our findings confirm the results of studies which dispute a linear inverse association between condition severity and HRQOL and emphasize the importance of peer relations in young patients with MMC.

Activity Level, Functional Health, and Quality of Life of Children with Myelomeningocele as Perceived by Parents

“…In our population, the parents scored children in the low 80s and considerably below on the PODCI for all categories except upper extremity and physical function scores for both neurologic groups and in comfort scores for those children in the L2 and above group. This is in contrast to Leger [16] who reported that their sample of youth (age [15][16][17][18][19][20][21][22][23][24][25] with MM in the New England area had a high quality of life and participated in recreation and sports.…”

“…Parents of the 50 subjects were interviewed in person during the MM clinic using two HRQOL outcome tools: the PedsQL TM Version 4.0 [7,[24][25][26][27] parent version for young children (ages 5-7), children (ages [8][9][10][11][12], and the teen report (ages [13][14][15][16][17][18]; and the PODCI Version 2.0 [10] parent form for children (ages 2-18). Because of concerns about time and length of the instrument, 22% of the parents declined to complete the PODCI questionnaire.…”

“…Leger [16] used the Quality of Life in Spina Bifida P2 and found subjects had a high level of quality of life, but the number of reported secondary health conditions was concerning. Müller-Godeffroy et al [17], using the KINDL-R, reported children with MM scored lower in the areas of emotional well-being, self-esteem, and peer relations.…”

“…Multiple studies [4,6,[15][16][17][18][19][20][21][22] have looked at quality of life for persons with MM using a variety of outcome tools for parents and for youth. Several studies have suggested an inverse relationship [18,20,22] between health-related quality of life (HRQOL) and the lesion level, whereas others report no [4,6,17] or only a partial [15] relationship between the two.…”

“…Several studies have suggested an inverse relationship [18,20,22] between health-related quality of life (HRQOL) and the lesion level, whereas others report no [4,6,17] or only a partial [15] relationship between the two. Using the Spina Bifida Health Related Quality of Life Questionnaire, Schoenmakers et al [21] found independent mobility was the most important determining factor for HRQOL.…”