Health-Related Quality of Life of Children and Adolescents with Growth Hormone Deficiency or Idiopathic Short Stature – Part 2: Available Results and Future Directions

Bullinger, Monika; Kołtowska-Häggström, Maria; Sandberg, David E.; Chaplin, John; Wollmann, H; Noeker, Meinolf; Brütt, Anna Levke

doi:10.1159/000232159

Cited by 69 publications

(63 citation statements)

References 81 publications

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“…These problems, however, did not occur at all ages and some evidence suggests that it is only during adolescence [14] or perhaps during adulthood [15,16] that problems emerge. The reasons for such problems are multifaceted but seem to be related to social acceptance and/or perception of short stature within the community [17,18,19,20]. …”

Section: Introductionmentioning

confidence: 99%

Improvements in Behaviour and Self-Esteem following Growth Hormone Treatment in Short Prepubertal Children

et al. 2011

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Background/Aims: To evaluate effects of growth hormone (GH) treatment on behaviour and psychosocial characteristics in short-stature children. Methods: 99 referred prepubertal non-familiar short-stature children (32 GH deficiency; 67 idiopathic short stature) aged 3–11 years, randomized to fixed or individual GH doses and their parents completed questionnaires (Child Behaviour Checklist, Birleson Depression Self-Report Scale, Abbreviated Parent-Teacher Questionnaire, I Think I Am, Well-Being Visual-Analogue Scales for Short-Stature Children) at baseline (BL) and after 3, 12, and 24 months. Results: At BL, children showed higher levels of internalizing behaviour (p < 0.001), lower levels of externalizing behaviour (p < 0.006) and self-esteem (p < 0.001) compared to reference values. During GH treatment, behavioural measures (p < 0.001) and depression (p < 0.01) changed towards the mean of the population within the first 3 months and remained improved to 24 months. Self-esteem improved at all time points (p < 0.001), and in all subgroups, as did well-being dimensions stability and mood (p < 0.05). Multiple regression analysis showed that greater improvements were related to lower BL value, height gain, higher maximal GH value, being older, and being male. Conclusion: On GH treatment, prepubertal short children significantly improved on behavioural, depression, and psychosocial evaluations over a 2-year period of GH treatment. Most change occurred within the first 3 months, which highlights this short period as important not only for growth and metabolic changes but also for behaviour and psychosocial improvements following GH treatment.

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Section: Introductionmentioning

confidence: 99%

Improvements in Behaviour and Self-Esteem following Growth Hormone Treatment in Short Prepubertal Children

et al. 2011

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“…We identified nine papers that looked at QoL in other growth-related conditions treated with growth hormone. [36][37][38][39][40][41][42][43][44] Again these presented a variety of results, but only limited evidence that there is a strong link between QoL and final height gain. Several of the studies called for further research into the links between QoL and short stature and the tool with which this is evaluated.…”

Section: Resultsmentioning

confidence: 99%

Growth monitoring for short stature: update of a systematic review and economic model

Craig

Fayter²,

Stirk³

et al. 2011

Health Technol Assess

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“…The aim of the QoLISSY instrument development was to construct a psychometrically sound and cross-culturally valid tool that covers the impacts of short stature on HrQoL in children and adolescents from their own perspective and the added perspective of their parents [10,11]. Development and psychometric testing of the QoLISSY instrument in a large sample of children and adolescents from five European countries (France, Germany, Spain, Sweden and the UK) were described in a previous paper [12].…”

Section: Introductionmentioning

confidence: 99%

Cross-Cultural Equivalence of the Patient- and Parent-Reported Quality of Life in Short Stature Youth (QoLISSY) Questionnaire

et al. 2014

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Background: Testing cross-cultural equivalence of patient-reported outcomes requires sufficiently large samples per country, which is difficult to achieve in rare endocrine paediatric conditions. We describe a novel approach to cross-cultural testing of the Quality of Life in Short Stature Youth (QoLISSY) questionnaire in five countries by sequentially taking one country out (TOCO) from the total sample and iteratively comparing the resulting psychometric performance. Methods: Development of the QoLISSY proceeded from focus group discussions through pilot testing to field testing in 268 short-statured patients and their parents. To explore cross-cultural equivalence, the iterative TOCO technique was used to examine and compare the validity, reliability, and convergence of patient and parent responses on QoLISSY in the field test dataset, and to predict QoLISSY scores from clinical, socio-demographic and psychosocial variables. Results: Validity and reliability indicators were satisfactory for each sample after iteratively omitting one country. Comparisons with the total sample revealed cross-cultural equivalence in internal consistency and construct validity for patients and parents, high inter-rater agreement and a substantial proportion of QoLISSY variance explained by predictors. Conclusion: The TOCO technique is a powerful method to overcome problems of country-specific testing of patient-reported outcome instruments. It provides an empirical support to QoLISSY's cross-cultural equivalence and is recommended for future research.

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Health-Related Quality of Life of Children and Adolescents with Growth Hormone Deficiency or Idiopathic Short Stature – Part 2: Available Results and Future Directions

Cited by 69 publications

References 81 publications

Improvements in Behaviour and Self-Esteem following Growth Hormone Treatment in Short Prepubertal Children

Improvements in Behaviour and Self-Esteem following Growth Hormone Treatment in Short Prepubertal Children

Growth monitoring for short stature: update of a systematic review and economic model

Cross-Cultural Equivalence of the Patient- and Parent-Reported Quality of Life in Short Stature Youth (QoLISSY) Questionnaire

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