Abstract
BackgroundThe Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. This study evaluates the psychometric properties of the QoLISSY questionnaire within a German prospective trial of short statured children treated with human growth hormone (hGH).MethodThe instrument was administered to children with idiopathic growth hormone Deficiency (IGHD) and small for gestational age (SGA) before and after 12 month of hGH treatment. Children with idiopathic short stature (ISS) served as a reference group receiving no treatment. Psychometric testing included scale distribution characteristics, reliability (internal consistency), criterion-and convergent validity (correlations with the generic KIDSCREEN-Index, inter-correlations among QOLISSY subscales), known-group validity (treatment status, height SDS), and responsiveness analysis (ability to detect change).ResultsOne hundred fifty-two parents and 66 children/adolescents completed both HRQOL assessments. The QoLISSY demonstrated good reliability with Cronbach’s alpha > .70. Moderate significant correlations between QoLISSY domains and the KIDSCREEN-10 Index supported criterion validity. Statistically significant differences in HRQOL were observed between treatment groups at baseline with children who were about to start treatment reporting a significantly lower HRQOL compared to the children who will not receive treatment. No significant differences were found between the level of short stature based on height SDS scores (≤ − 2 SDS, > − 2 SDS). Furthermore, the instrument detected significant changes in HRQOL between the treated and the untreated group in patient-reports.ConclusionsIn conclusion, the scales showed satisfactory reliability, adequate validity and ability to detect change in self-reported HRQOL within GH treatment. Findings support QoLISSY’s further use in clinical trials, offering the opportunity to adequately assess HRQOL from the patients’ and caregivers’ perspective to improve patient-centered care.
Highlights
The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth
To examine if the condition-specific QoLISSY questionnaire is a valid, reliable and responsive disease-specific instrument that measures HRQOL of short stature youth in a longitudinal trial setting and can be used as a health outcome indicator of human growth hormone (hGH) interventions, this study aimed to evaluate the psychometric performance of the QoLISSY questionnaire within a prospective observational study
Since patients grow older during the study process, more patient-reports were available at T1
Summary
The Quality of Life of Short Stature Youth (QoLISSY) questionnaire is a patient- and parent-reported outcome measure assessing health-related quality of life (HRQOL) in short stature youth. Health-related quality of life (HRQOL) has become an important health outcome indicator for use in clinical trials as well as in epidemiological analysis and health service research It received increased recognition as a relevant health indicator in children with chronic conditions [1]. Research has shown that using a generic HRQOL instrument in short stature children can detect differences in HRQOL and psychosocial functioning when compared to children with normal stature [13, 14, 16], it has been shown that short stature-specific instruments can detect changes in HRQOL in children who received treatment, when compared to untreated children, while generic instruments were not sensitive enough to detect these changes [17] This finding underlines the importance of assessing HRQOL in longitudinal studies with diseasespecific instruments, because if significant differences in HRQOL are no longer detected at least one year after children start treatment, a positive effect of treatment on HRQOL can be reasonably assumed
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