Graham JE, McKenna S, Wilburn J, Twiss J. Assessing quality of life in adult growth hormone deficiency: further development of the QoL-AGHDA. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A446-7. doi: 10.1016/j.jval.2013.08.710


OBJECTIVES: The QoL-AGHDA assesses quality of life (QoL) specific to adults with Growth Hormone Deficiency (GHD). Questionnaire content was derived from qualitative interviews conducted with individuals who had the condition. Since its development a number of new language adaptations have been made for Europe (9), Eastern Europe (4), and Central and South America (2). New language versions of the measure were required for use in two major new multinational clinical trials. These were for Greece, Hungary, Israel, Romania, Russia, Slovakia, Ukraine and the US (Spanish).

METHODS: The dual-panel methodology was employed to translate each of these measures. This approach has been used in the adaptation of all needsbased QoL measures. Two panels are held. The first employs local people who are also proficient in English who agree the most appropriate translation for the instructions and items. The second panel involves lay people who ensure that the level of language is appropriate and will be understood by future respondents. Following translation, cognitive debriefing interviews were conducted with adults with GHD in each country.

RESULTS: No major difficulties were experienced in producing the translations. Ten to fifteen cognitive debriefing interviews were conducted in each country. Interviewees reported the measure to be easy to understand and complete and that the content was relevant without missing important issues.

CONCLUSIONS: The standards set by the existing UK version of the QoLAGHDA are high with internal consistency and test-retest reliability above 0.90. Construct validity was also demonstrated by the measure’s ability to distinguish between patients according to self-perceived general health and by correlating scores with those on the General Well Being Index (greater than  0.70). Completed validations have obtained a similar psychometric quality. Similar studies are underway to evaluate the formal construct validity and reproducibility of these new language versions.

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