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

Michaela Dellenmark-Blom (), Marie Andersson, Konrad M. Szymanski, Charlotta Levén Andréasson, Magdalena Vu Minh Arnell, Sofia Sjöström and Kate Abrahamsson
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Michaela Dellenmark-Blom: Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, 416 85 Gothenburg, Sweden
Marie Andersson: Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, 416 85 Gothenburg, Sweden
Konrad M. Szymanski: Division of Pediatric Urology, Riley Hospital for Children, Indiana University Health, Indianapolis, IN 46202, USA
Charlotta Levén Andréasson: Department of Pediatric Surgery, Sahlgrenska University Hospital, Queen Silvia Children’s Hospital, 416 85 Gothenburg, Sweden
Magdalena Vu Minh Arnell: Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, 416 85 Gothenburg, Sweden
Sofia Sjöström: Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, 416 85 Gothenburg, Sweden
Kate Abrahamsson: Department of Pediatrics, Institute of Clinical Sciences, University of Gothenburg, 416 85 Gothenburg, Sweden

IJERPH, 2024, vol. 21, issue 5, 1-17

Abstract: 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.

Keywords: spina bifida; quality of life; rare disease; neurogenic bladder; translation; validity; patient-reported outcome (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2024
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