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Development and validation of a spina bifida-specific pediatric quality of life questionnaire: the Spina Bifida Pediatric Questionnaire, SBPQ

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Abstract

Purpose

Based on existing questionnaires and patient interview, a health-related quality of life (HRQoL) questionnaire in spina bifida (SB) children is created and validated, the Spina Bifida Pediatric Questionnaire (SBPQ).

Methods

SB patients from the SB reference centre Ghent University Hospital, Belgium, with mental ability between 6 and 18 years old and their parents were asked to participate in the study, together with a control group.

Results

Thirty-nine patients and parents answered the questionnaire once, 20 patients and their parents the test-retest. Thirty-five controls answered the questionnaire once, 34 controls and their parents the test-retest. The final questionnaire was retained when 3 consecutive patients approved all items. Visual clues were added for children with a mental ability below 10 years of age. The test-retest showed a good to excellent agreement for child self-report in 5 domains (not for social functioning), for parent proxy report in all domains (6), for control self-report in 4 domains (not for domain home) and for control parent proxy report in all domains (5). Internal consistency reliability was good in child self-report and in parent proxy report, except for physical functioning in child self-report. There was parent–child agreement for 4 out of 6 domains. Regarding social and emotional functioning, QoL was rated lower by parents than by children themselves.

Conclusion

A SB HRQoL questionnaire was developed and validated. Because of visual aid, this questionnaire can be used by both young children and adolescents.

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Acknowledgments

Laura Mertens, Jozefien Haeve and Laurien De Ruyck are Masters students.

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Conflict of interest

The authors declare that they have no competing interests.

Author information

Authors and Affiliations

  1. Department of Paediatric Gastroenterology, Ghent University Hospital, De Pintelaan 185, 9000, Ghent, Belgium

    Saskia Vande Velde, Stephanie Van Biervliet, Ruth De Bruyne & Myriam Van Winckel

  2. Department of Paediatric Psychology, Ghent University Belgium, Ghent, Belgium

    Jolien Laridaen & Eline Van Hoecke

  3. Department of Psychology, Ghent University Belgium, Ghent, Belgium

    Liesbet Goubert

Authors
  1. Saskia Vande Velde
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  2. Jolien Laridaen
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  3. Eline Van Hoecke
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  4. Stephanie Van Biervliet
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  5. Ruth De Bruyne
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  6. Myriam Van Winckel
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  7. Liesbet Goubert
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Corresponding author

Correspondence to Saskia Vande Velde.

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Velde, S.V., Laridaen, J., Van Hoecke, E. et al. Development and validation of a spina bifida-specific pediatric quality of life questionnaire: the Spina Bifida Pediatric Questionnaire, SBPQ. Childs Nerv Syst 32, 105–110 (2016). https://doi.org/10.1007/s00381-015-2903-3

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  • DOI: https://doi.org/10.1007/s00381-015-2903-3

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