Multidisciplinary management of people with spina bifida across the lifespan

Koch, Vera H.; Lopes, María Helena Baena de Moraes; Furusawa, Erika Arai; Vaz, Katharinne; Barroso, Ubirajara

doi:10.1007/s00467-023-06067-w

Cited by 4 publications

(1 citation statement)

References 142 publications

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“…The latter type is associated with risk of paralysis and sensory dysfunction below the affected level, bladder and bowel dysfunction predisposing to urinary and fecal incontinence, and urinary tract infections as well as kidney damage and failure. Brain dysmorphology, including hydrocephalus and Chiari II malformation, may contribute to cognitive deficits, including intellectual functioning disability [2,3]. MMC can today be surgically closed through fetal or postnatal surgical repair [4][5][6].…”

Section: Introductionmentioning

confidence: 99%

Linguistic, Content and Face Validity of the Swedish Version of a Quality-of-Life Assessment for Children, Teenagers and Adults with Spina Bifida

Dellenmark-Blom,

Andersson,

Szymanski

et al. 2024

IJERPH

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Spina bifida includes a spectrum of different neural tube defects. Myelomeningocele is the most serious type and is associated with a risk of paralysis and sensory dysfunction below the affected level, bladder/bowel dysfunction, brain dysmorphology, and impaired health-related quality of life (HRQoL). The aim of this study was to describe the establishment of linguistic, content and face validity of the Swedish version of a Quality-of-Life Assessment for children (QUALAS-C, n = 10 items), teenagers (QUALAS-T, n = 10 items) and adults with spina bifida (QUALAS-A, n = 15 items) based on the original US English versions. The process included close collaboration with the original instrument developer and complied with international standards on patient-reported outcome measurements. The procedure includes forward translation, expert and patient/parent review and reconciliation, back translation, back translation review and cognitive debriefing interviews with 16 people with spina bifida aged 8 to 33, providing them with the possibility of evaluating the clarity, adequacy, and comprehensiveness of QUALAS-C, QUALAS-T and QUALAS-A, respectively. The interviews lasted a median of 15 min (range 8–16) for QUALAS-C, 10 min (range 9–15) for QUALAS-T and 24 min (range 9–38) for QUALAS-A. Four main issues/topics needed attention and discussion after both the forward and back translation. Following the back translation review, all issues were resolved. The patient feedback revealed recognition of the HRQoL issues included in QUALAS, and also difficulties in understanding some questions. After the patients’ evaluation, four items were reworded for clarity. No study participant reported a wish to add to or remove questions from QUALAS. Hence, the Swedish versions of QUALAS became conceptually equivalent to the original US English versions and achieved linguistic, content and face validity. While empowering the voices of people with spina bifida, these results also enable their HRQoL to be properly assessed in research and clinical care in Sweden and in international studies.

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