Psychometric performance of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in the Netherlands

Abstract

The Dutch QoLISSY is a psychometrically reliable and valid short stature-specific QoL measure. It is now available for use in clinical research and practice to evaluate well-being and possible effects of growth hormone treatment and psychological interventions in the Netherlands.

Validation of the Italian Quality of Life in Short Stature Youth (QoLISSY) questionnaire

“…These results suggest differences in the performance of generic vs. conditionspecific tools and support the need for a condition-specific tool such as the QoLISSY questionnaire. Differences between the degree of short stature (shorter vs. taller children) were only found in the parent reported Treatment scale .These results do not fully support the previous findings of height-related differences in perceived HrQoL in other cultural QoLISSY validations [16,17]. Interestingly, HrQoL studies in Italy suggest that parents rather than their children are sensitive to such differences, which may be due to a reluctance in Italian parents to inform their children about their health condition.…”

“…This procedure named "take-one-country-out-approach" (TOCO) was previously used in the cross-cultural analysis of the QoLISSY across languages and indicated cross-cultural equivalence in psychometric performance [12,13]. Following Fayers and Machin [14], the Comparative Fit Index (CFI) >0.90 indicates an acceptable fit, while a good fit requires a CFI of >0.95.…”

Quality of Life in Adolescent Boys with Idiopathic Short Stature: Positive Impact of Growth Hormone and Aromatase Inhibitors

“…The instrument was easy to administer and well accepted by the participants and their parents, which makes it a suitable choice in studies seeking to assess HrQoL as one of the end points for the treatment of youths with a short stature. Psychometric properties of the QoLISSY questionnaire in this trial proved to be as satisfactory as in previous studies [6, 35, 36, 51]. The fact that domain scores improved differentially as a result of the treatment shows that the individual evaluation of aspects of QoL matters and is helpful to better understand the source of concerns for the patients and their families.…”

Critical paediatric bioethics and the treatment of short stature : an interdisciplinary study

“…Researchers involved in the development of the QoLISSY questionnaire write that "short stature as an isolated characteristic may constitute a risk factor for behavioural and emotional problems" not only because of "barriers in everyday life" but "also because short stature can be regarded as a social stigma, which in turn may affect self-perception and the social integration of persons with short stature" (Bullinger et al 2013, p. 2). The project to develop QoLISSY has involved collaboration between several clinics and research centres in Europe (France, Germany, the UK, Spain, Sweden, and the Netherlands; Bullinger et al 2013, Rohenkohl et al 2016 and in the US (Bullinger et al 2015).…”