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This study aimed to develop and pilot test a questionnaire to assess the quality of life for parents of children with achondroplasia.

Development and pilot testing of the quality of life of parents of children with achondroplasia questionnaire

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Randomized trial develops and tests the QOLA questionnaire for parents of children with achondroplasia, indicating a valuable new resource.

This study aimed to develop and pilot test a questionnaire to assess the quality of life for parents of children with achondroplasia.
Developed a questionnaire using mixed-methods design and qualitative interviews with 17 parents.
Conducted cognitive debriefing and piloted the 63-item questionnaire in Germany, Italy, and Portugal with a total of 50 participants.
Conducted item analysis for reliability and internal consistency across eight domains.
The QOLA questionnaire includes 63 items across eight domains relevant to parental quality of life.
Internal consistency was good (α = 0.798 for total scale), with moderate to strong inter-domain correlations.
Cognitive debriefing provided positive feedback and suggestions for further improvement.

Adedeji et al. (2026) studied this question.

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Randomized trial develops and tests the QOLA questionnaire for parents of children with achondroplasia, indicating a valuable new resource.