Clinical relevance: Understanding the quality-of-life (QoL) impacts of amblyopia and strabismus from the perspectives of patients using validated tools would enable eye care practitioners to provide better clinical management.
Background: Item banks are advanced patient reported outcome measures with several advantages over traditional QoL assessment. This paper describes the development of amblyopia and strabismus-specific QoL item banks for two distinct country settings: Australia (high-income) and India (low-middle income) and examines the unique QoL issues.
Methods: Using a bottom-up systematic approach, the content for the item banks was identified from three sources: existing self-report amblyopia and strabismus questionnaires (n = 22), qualitative literature (n = 5) and prospective qualitative studies in Australia (n = 49) and India (n = 30). The initial item pool underwent item evaluation, construction, and pre-testing to form optimal sets of representative items. The Indian item pools were first developed in English and translated into Hindi and Tamil using a rigorous translation protocol. The differences in QoL experiences that emanated from the qualitative studies and the number of common and unique items in the final item pools were compared.
Results: The final Australian and Indian item pools comprised 312 and 277 items, respectively, covering 11 QoL domains. Two hundred and sixty items (79%) were common to both countries, and 21% were unique. Of the 11 domains, except for activity limitation (64.5%), visual symptoms (73.3%) and emotional impact (75.5%) domains, all other domains had over 80% of items common to both countries. The unique items can be attributed to differences in QoL experiences, individual perspectives, culture, lifestyle, country setting and health systems.
Conclusion: Amblyopia has a multifaceted impact on QoL irrespective of the country settings. Despite a huge overlap in QoL impacts between Australia and India, both countries had unique issues, especially activity limitations. The study developed comprehensive, country-specific item pools for Australia and India.
Keywords: Amblyopia; item bank; quality of life; questionnaire; strabismus.