FURTHER DEVELOPMENTS OF THE QUALITY OF LIFE ASSESSMENT OF GROWTH HORMONE DEFICIENCY IN ADULTS (QOL-AGHDA)

Author(s)

Twiss J1, Mckenna S1, Doward L1, Hána V2, Karbownik-Lewinska M3, Popovic V4, Pura M5, Ribeiro-Oliveira A6, Koltowska-Häggström M71Galen Research Limited, Manchester, United Kingdom, 2Charles University, Prague, Czech Republic, 3Medical University of Lodz, Lodz, Poland, 4University Clinical Centre, Belgrade, Serbia and Montenegro, 5National Institute of Endocrinology & Diabetology, Lubochna, Slovak Republic, 6Universidade Federal de Minas Gerais, Belo Horizonte, Brazil, 7Pfizer Endocrine Care, Sollentuna, Sweden

OBJECTIVES: The QoL-AGHDA is the first true quality of life (QoL) measure for adult growth hormone deficiency 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 3 stages: Translation, cognitive debriefing and a validation survey. The dual panel translation method was used to ensure the items were translated accurately and expressed in everyday language. Cognitive-debriefing 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 Profile (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. QoL-AGHDA scores were statistically significantly 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.  

Conference/Value in Health Info

2010-11, ISPOR Europe 2010, Prague, Czech Republic

Value in Health, Vol. 13, No. 7 (November 2010)

Code

PDB72

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Diabetes/Endocrine/Metabolic Disorders

Explore Related HEOR by Topic


Your browser is out-of-date

ISPOR recommends that you update your browser for more security, speed and the best experience on ispor.org. Update my browser now

×