Background The Pediatric Quality of Life Inventory™ (PedsQL™) Neuromuscular Module (PedsQL™ 3.0 NM) evaluates the health-related quality of life in children who are affected by neuromuscular diseases. This study's aim is to assess the adaptation of the PedsQL™ 3.0 NM Turkish version (PedsQL™ 3.0 NM-TR) for 2- to 4-year-olds in spinal muscular atrophy (SMA).

Methods The procedure of translating the PedsQL™ 3.0 NM into Turkish was conducted in accordance with the translation methodology outlined by the PedsQL™ measurement model. The PedsQL™ 3.0 NM-TR was administered to 54 parents of children with SMA aged 2 to 4 years. The test–retest reliability and intraclass correlation coefficient (ICC) were measured for reliability analysis. Cronbach's α coefficient and item score correlations were calculated for internal consistency. Concurrent construct validity was evaluated by Pearson correlations between the outcomes of the PedsQL™ 4.0 Generic Core Scale (PedsQL™ 4.0 GCS) and the PedsQL™ 3.0 NM.

Results The PedsQL™ 3.0 NM-TR total score shows excellent reliability. The Cronbach's α values for the PedsQL™ 3.0 NM ranged between 0.871 and 0.906, while those for the PedsQL™ 4.0 GCS ranged between 0.843 and 0.897. Test–retest ICC values for the PedsQL™ 3.0 NM-TR ranged between 0.812 and 0.917, and for the PedsQL™ 4.0 GCS ranged between 0.773 and 0.899. The relationship between the PedsQL™ 3.0 NM-TR and the subscores of the PedsQL™ 4.0 GCS demonstrated a range of correlations from excellent to fair, indicating the interplay between two scales.

Conclusion This study established the PedsQL™ 3.0 NM-TR as reliable, valid, and feasible for use in children aged 2 to 4 years with SMA.

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Istanbul Medipol University (Date: January 12, 2022/No: E-10840098-772.02-213).

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by S.K.Y., M.T., and S.Ö. The first draft of the manuscript was written by S.K.Y. and M.T. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Conceptualization: S.K.Y., M.T., S.Ö. Methodology: S.K.Y., M.T. Formal analysis and investigation: S.K.Y., M.T. Writing—original draft preparation: S.K.Y., M.T., S.Ö. Writing—review and editing: S.K.Y., M.T., S.Ö. Funding acquisition: S.K.Y., M.T., S.Ö. Resources: S.K.Y., M.T., S.Ö. Supervision: S.Ö.

Received: 19 December 2023

Accepted: 14 March 2024

Accepted Manuscript online:
15 March 2024

Article published online:
08 April 2024

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