Twiss J, McKenna S, Doward LC, Hana V, Karbownik-Lewinksa M, Popovic V. Further developments of the Quality of Life Assessment of Growth Hormone Deficiency in Adults (QOL-AGHDA). Poster presented at the 13th Annual European Congress; November 2010. Prague, Czech Republic. [abstract] Value Health. 2010 Nov; 13(7):A297.

OBJECTIVES: The QoL-AGHDA is the fi rst true quality of life (QoL) measure for adult growth hormone defi ciency and is widely used in clinical practice and trials. In the UK NICE advises that scores on the QoL-AGHDA should be used to guide treatment selection. The scale has good psychometric properties and has been shown to be responsive to changes in disease severity. The objective of the study was to adapt the QoL-AGHDA for the Czech Republic, Poland, Serbia, Slovakia and Brazil.

METHODS: The adaptation in each country required three stages: Translation, cognitive debriefi ng and a validation survey. The dual panel translation method was used to ensure the items were translated accurately and expressed in everyday language. Cognitive-debriefi ng interviews with local patients assessed face and content validity. The validation survey tested the psychometric properties of the new scales and included the Nottingham Health Profi le (NHP) as a comparator measure.

RESULTS: Validation data are not available for Slovakia. Mean scores on the new versions of the QoL-AGHDA ranged from 6.2 to 11.8 (maximum possible = 25). Internal consistency ranged from 0.89–0.91 and test-retest reliability from 0.88–0.93. QoLAGHDA scores were statistically signifi cantly related to; perceived general health and level of fatigue in the Czech Republic, perceived physical activity and level of fatigue in Poland and Serbia and to perceived general health and rated QoL in Brazil. Across the countries mean correlations with NHP sections were (as expected) highest with energy level and emotional reactions (correlations 0.68–0.83) and lowest with sleep disturbance and pain (correlations 0.38–0.46).

CONCLUSIONS: This study indicates that (with the exception of Slovakia which requires further validation) the new language versions of the QoL-AGHDA meet the standards of the original UK version and the other 9 existing versions. The new adaptations represent valid and reliable tools for measuring QoL in international clinical trials.

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