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Assessing quality of life in adult growth hormone deficiency: Further 
development of the QoL-AGHDA 
Graham JE, McKenna SP...
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Assessing quality of life in adult growth hormone deficiency: Further development of the QoL-AGHDA

This poster outlines the further development of the Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA), which is a patient reported outcome measure. This includes the adaptation of the QoL-AGHDA for other languages.

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Assessing quality of life in adult growth hormone deficiency: Further development of the QoL-AGHDA

  1. 1. Assessing quality of life in adult growth hormone deficiency: Further development of the QoL-AGHDA Graham JE, McKenna SP, Wilburn J, Twiss J. Galen Research Ltd, Manchester, UK Background The QoL-AGHDA is included in a large international database monitoring long-term efficacy and safety of growth hormone replacement therapy. Thus, demand for the QoL-AGHDA has led to the development of 15 new language versions of the measure for Europe (13) and North America (2). Recently, the QoL-AGHDA was required for use in two new major multinational clinical trials. These required the development of additional language versions for Greece, Hungary, Israel, Romania, Russia, Slovakia, Ukraine and Spanish for the US. This poster reports on the new language adaptations. Table 1: QoL-AGHDA language versions available America USA 23 language versions of the QoL-AGHDA are now available. The standards set by the UK version of the QoL-AGHDA are high, demonstrating excellent psychometric and scaling properties. Completed validations have obtained a similar psychometric quality. Studies are currently underway to evaluate the formal construct validity and reproducibility of these new language versions. Methodology Figure 2: International coverage of the QoL-AGHDA Contact details Miss Jessica Elizabeth Graham. Research Assistant, Galen Research Ltd, Enterprise House, Manchester Science Park, Lloyd Street North, Manchester, M15 6SE, UK. Tel: +44 (0)161 226 4446 Email: jgraham@galen-research.com (English) USA (Spanish) Brazil (Portuguese) Europe Belgium (Flemish) Belgium (French) Czech Rep. (Czech) Germany (German) Serbia (Serbian) Denmark (Danish) Spain (Spanish) France (French) Italy (Italian) Netherlands (Dutch) Poland (Polish) Sweden (Swedish) Slovakia (Slovakian) UK (English) Greece (Greek) Hungary (Hungarian) Romania (Romanian) Russia (Russian) Ukraine (Ukrainian) Israel (Hebrew) The concept of Quality of life (QoL) is beset with theoretical disagreement. This problem is confounded by the fact that few ‘QoL’ measures are based on a clear theoretical model. By contrast, the QoL-AGHDA adopted the needs-based QoL model (see below). Health authorities now require evidence of patient benefit in addition to evidence of safety and efficacy. This has led to an increase in the importance of having available high quality patient -reported outcome (PRO) measures. When used in clinical trials, PROs need to demonstrate extremely good psychometric properties, including: unidimensionality, reproducibility, construct validity and responsiveness to change. The needs-based QoL model argues that QoL is dependent on the ex-tent to which a patient’s needs are satisfied. If needs are not met, QoL is poor. Disease (and potentially its treatment) prevent needs from be-ing fulfilled. Hunt SM, McKenna SP. The QLDS:A scale for the measurement of quality of life in depression. Health Policy 1992a;22: 307-19. The QoL-AGHDA was first published in 1999 and has been regularly used in clinical studies ever since. McKenna SP, Doward LC, Alonso J, Kohlman, T, Neiro M, Preito L, Wiren, L. (1999). The QoL-AGHDA: An instrument for the assessment of quality of life in adults with growth hormone deficiency. Quality of life research, 8, 373-383 To derive the content of the QoL-AGHDA, qualitative interviews were conducted with GHD patients. Initially, 37 items were chosen as being relevant to the UK, Sweden, Germany, Italy and Spain. A test-retest postal survey was conducted to reduce the measure, establish its psychometric properties and to ensure unidimensionality. Items with low item-total correlations were removed, producing a 25-item version of the QoL-AGHDA. This version had excellent internal consistency (=0.88-0.94) and test-retest reliability (0.86 – 0.95) in all five countries. Construct validity was demonstrated by the measure’s ability to distinguish between patients according to self-perceived general health in Spain, and by correlating scores with those on the General Well Being Index (0.70) for the UK, Sweden and Germany. The QoL-AGHDA is well accepted by patients. It is short, easy to administer and complete and has excellent scaling properties. Thus, it is a practical and valuable measure for assessing the impact of interventions for GHD in clinical studies and trials. No major difficulties were experienced in producing the translations. Ten to fifteen patient interviews were conducted in each country. Interviewees confirmed that the adapted measures are simple, easy to understand and idiomatic. The content of the measure was deemed acceptable and relevant to patients with GHD, without missing any important issues. Table 1 shows the available QoL-AGHDA language versions. Geographical coverage is shown in Figure 2. Please contact the authors at the address below if you are interested in further validating existing versions of the QoL-AGHDA or collaborating on the development of new language versions. Thank you. Objectives A dual-panel methodology was employed to translate the measures. This methodology emphasises the importance of conceptual equivalence rather than simply producing a literal translation of the item. Initially, members of a bilingual panel suggest possible translations. A lay panel is then convened consisting of local people of average education who check the translations and can change the wording to ensure it is easy to understand. Thus, final wording is at an appropriate level of sophistication for potential patients. Finally, the translations were tested with local GHD patients by means of cognitive debriefing interviews. These interviews were designed to confirm face and content validity. Results Conclusions Figure 1: Sample page from the QoL-AGHDA

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