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

(2016) CHILDS NERVOUS SYSTEM. 32(1). p.105-110
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Abstract
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). 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. 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. A SB HRQoL questionnaire was developed and validated. Because of visual aid, this questionnaire can be used by both young children and adolescents.
Keywords
Quality of life, Spina bifida, Child, Young adult, GENERIC CORE SCALES, HEALTH-STATUS, YOUNG-ADULTS, PEDSQL(TM), CHILDREN, RELIABILITY, VALIDITY, HYDROCEPHALUS, RESPONSIVENESS, IMPACT

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Chicago
VANDE VELDE, SASKIA, JOLIEN LARIDAEN, Eline Van Hoecke, Stephanie Van Biervliet, RUTH DE BRUYNE, Myriam Van Winckel, and Liesbet Goubert. 2016. “Development and Validation of a Spina Bifida-specific Pediatric Quality of Life Questionnaire: The Spina Bifida Pediatric Questionnaire, SBPQ.” Childs Nervous System 32 (1): 105–110.
APA
VANDE VELDE, S., LARIDAEN, J., Van Hoecke, E., Van Biervliet, S., DE BRUYNE, R., Van Winckel, M., & Goubert, L. (2016). Development and validation of a spina bifida-specific pediatric quality of life questionnaire: the Spina Bifida Pediatric Questionnaire, SBPQ. CHILDS NERVOUS SYSTEM, 32(1), 105–110.
Vancouver
1.
VANDE VELDE S, LARIDAEN J, Van Hoecke E, Van Biervliet S, DE BRUYNE R, Van Winckel M, et al. Development and validation of a spina bifida-specific pediatric quality of life questionnaire: the Spina Bifida Pediatric Questionnaire, SBPQ. CHILDS NERVOUS SYSTEM. 2016;32(1):105–10.
MLA
VANDE VELDE, SASKIA, JOLIEN LARIDAEN, Eline Van Hoecke, et al. “Development and Validation of a Spina Bifida-specific Pediatric Quality of Life Questionnaire: The Spina Bifida Pediatric Questionnaire, SBPQ.” CHILDS NERVOUS SYSTEM 32.1 (2016): 105–110. Print.
@article{7243382,
  abstract     = {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). 
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. 
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. 
A SB HRQoL questionnaire was developed and validated. Because of visual aid, this questionnaire can be used by both young children and adolescents.},
  author       = {Vande Velde, Saskia and Laridaen, Jolien and Van Hoecke, Eline and Van Biervliet, Stephanie and De Bruyne, Ruth and Van Winckel, Myriam and Goubert, Liesbet},
  issn         = {0256-7040},
  journal      = {CHILDS NERVOUS SYSTEM},
  language     = {eng},
  number       = {1},
  pages        = {105--110},
  title        = {Development and validation of a spina bifida-specific pediatric quality of life questionnaire: the Spina Bifida Pediatric Questionnaire, SBPQ},
  url          = {http://dx.doi.org/10.1007/s00381-015-2903-3},
  volume       = {32},
  year         = {2016},
}

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