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Patient‐reported outcomes measure for children born preterm: validation of the SOLE VLBWI Questionnaire, a new quality of life self‐assessment tool
Author(s) -
Olivieri Ivana,
M Bova Stefania,
Fazzi Elisa,
Ricci Daniela,
Tinelli Francesca,
Montomoli Cristina,
Rezzani Cristiana,
Balottin Umberto,
Orcesi Simona
Publication year - 2016
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/dmcn.13122
Subject(s) - cronbach's alpha , quality of life (healthcare) , psychology , clinical psychology , medicine , pediatrics , developmental psychology , psychometrics , psychotherapist
Aim This study was conducted to develop and validate a new self‐report questionnaire for measuring quality of life (QoL), at school age, in children with a very low birthweight ( VLBW ). Method Through a focus group approach, children were involved directly in defining the questionnaire items, which were presented as illustrations rather than written questions. This preliminary validation of the questionnaire was conducted in 152 participants with VLBW (aged 7–11y) randomly selected from the five participating Italian centres. The questionnaire was completed by children and parents separately; data on children's demographic and medical history, and intellectual, adaptive, and behavioural functioning were collected using standardized scales. All the children also completed the Paediatric Quality of Life Inventory (Peds QL ), another Italian‐language measure of QoL in children. Results Our questionnaire was readily accepted and understood, and quick to complete. The Cronbach's alpha value showed it to be a reliable instrument. The child‐compiled version correlated well with the Peds QL , whereas no correlations emerged with the other scales used, IQ , or degree of impairment. Conversely, these variables correlated significantly with the parent‐compiled version. Children's and parents’ answers were divergent on practically all the items. Interpretation The results confirm the validity of the new instrument and highlight a poor overlap between parents’ and children's perspectives.