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

• Published in: Clinical orthopaedics and related research Vol. 469; no. 5; pp. 1230 - 1235
• Main Authors: Flanagan, Ann, Gorzkowski, Marianne, Altiok, Haluk, Hassani, Sahar, Ahn, Kwang Woo
• Format: Journal Article
• Language: English
• Published: New York Springer-Verlag 01.05.2011; Lippincott Williams & Wilkins Ovid Technologies
• Subjects: Activities of Daily Living; Adolescent; Age Factors; Body Mass Index; Cerebrospinal Fluid Shunts; Chicago; Child; Child, Preschool; Conservative Orthopedics; Disability Evaluation; Female; Humans; Lumbar Vertebrae; Male; Medicine; Medicine & Public Health; Meningomyelocele - diagnosis; Meningomyelocele - physiopathology; Meningomyelocele - psychology; Meningomyelocele - surgery; Motor Activity; Neurologic Examination; Orthopedics; Parents - psychology; Pediatrics; Perception; Quality of Life; Spinal Cord - physiopathology; Sports Medicine; Surgery; Surgical Orthopedics; Surveys and Questionnaires; Symposium: Myelomeningocele; Thoracic Vertebrae; Chicago; Functional Health; Basic Mobility; Outcome Tool; Spina Bifida; Motor Level
• ISSN: 0009-921X; 1528-1132
• DOI: 10.1007/s11999-010-1651-7

Background To provide the best health care for individuals with myelomeningocele (MM), clinicians and researchers need to understand their health and functional status as well as quality of life. The literature is mixed regarding the relationship between motor level and health-related quality of life (HRQOL) for these individuals. Questions/purposes We compared the HRQOL of children with MM at the L2 and above and L3-5 motor level and to demonstrate how having a shunt, age, and body mass index affect HRQOL instruments for these two motor level groups. Methods We recruited 50 patients with MM (24 male, 26 female) with a mean age of 11.5 years (range, 5–18 years) and motor levels of L2 and above (n = 15) and L3-5 (n = 35). Guardians were interviewed using standardized functional and HRQOL tools (the Pediatric Quality of Life and the Pediatric Outcomes Data Collection Instrument); height, weight, presence of a shunt, ambulatory level, and body mass index were also collected. Results We found a decreased HRQOL score for children with MM in the L2 and above motor level compared with those in the L3-5 motor level group. HRQOL had no correlation with body mass index and limited correlation with age. The presence of a shunt correlated with a decreased HRQOL. Conclusions Children with MM had deficits in HRQOL and that was associated with neurologic level and presence of a shunt. Level of Evidence Level IV, prognostic study. See Guidelines for Authors for a complete description of levels of evidence.