Ben-L'amri M, McKenna SP, Wilburn J, Twiss J. Assessing quality of life in new regions of the world: further development of the PsAQoL. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012 Oct; 21(S1):120.

AIMS: The PsAQoL is a measure of quality of life (QoL) specific to psoriatic arthritis (PsA). Measure content was derived from qualitative interviews conducted with UK patients. New language versions have since been developed for Hungary and Sweden. Interest in the PsAQoL has increased due to the need to determine changes in QoL associated with new biological treatments in multi-national clinical trials. There has been a trend in recent years for such trials to be conducted in new regions of the World rather than Europe and North America. An important question remains to be answered; can such measures provide valid assessment of QoL in these different cultures?;

METHODS:  New adaptations of the PsAQoL are currently being produced for Eastern Europe (4), Europe (1), the Middle East (1), Central and South America (2), Australasia (1) and Asia (5). The measures were translated into the new languages using the two panel methodology required for needs-based measures and tested with local patients by means of cognitive debriefing interviews.;

RESULTS: Overall translations of the questionnaires into the new languages were successful. Cultural and language difficulties were experienced in some countries, particularly in the Far East. However, the translation panels were able to overcome these difficulties adequately. Cognitive debriefing interviews with 10–15 PsA patients in each country have confirmed that the adapted PsAQoL is acceptable to patients who found it easy to understand and complete.;

CONCLUSIONS:  It remains to be seen whether these new adaptations meet the standards set by the existing European language versions (internal consistency [0.85), test–retest reliability coefficients: [0.85 and construct validity exhibited by their ability to distinguish groups of PsA patients that varied by perceived disease severity and general health and by correlating as expected with comparator measures. To test true cultural equivalence it is intended to use Item Response Theory analyses to determine whether respondents in the new regions answer the PsAQoL in the same way as those in Western countries. This will show whether the scales will work validly in the developing countries and whether data can be combined from different regions of the World.

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