Development of a nonverbal instrument for the assessment of health-related quality of life (PictoQOL)

• Applicant: Professor Dr. Patrick Brzoska, Ph.D.
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: from 2019 to 2021
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 417701975

Health-related quality of life is an important patient-reported outcome and a relevant determinant frequently studied in health services research. It is usually assessed by means of standardized questionnaires, e.g. belonging to the SF-36 family, which respondents fill-in themselves or which are administered by means of standardized interviews. Prior to the use among migrants these instruments often need to be readapted. In population-based studies, this is usually not possible because of resource constraints. As a consequence, some population groups are excluded from such surveys. Studies which at least recruit some groups of migrants usually encounter problems with respect to cross-group comparability as a result of poor measurement equivalence. Amongst others, poor measurement equivalence can result from differences in the understanding of items due to translation issues. Instead of using language- and migrant-specific instruments, one strategy to overcome these challenges may be to employ nonverbal questionnaires which are based on pictograms/pictures and which can be administered in different population groups with no or minimal need of adaptation.The aim of the present preliminary study is to develop such an instrument (PictoQOL) (12 months) and to validate it in chronically-ill Turkish, Syrian-Arab and non-migrants as part of a follow-up study (24 months). The development and later validation follow common guidelines of questionnaire development. In the preliminary study, the pictograms/pictures are developed in two sequential focus group discussions (n=9 each) together with patients from the three aforementioned groups. The developed pictograms/pictures will be examined with respect to their comprehensibility by means of cognitive interviews among 30 patients (Turkish migrants, Syrian-Arab migrants and non-migrants, n=10 per group) and revised accordingly (first pre-test). In a second pre-test, the revised PictoQOL will be evaluated a second time by means of cognitive interviews (n = 5 per each of the three aforementioned groups). Cognitive interviews will be based on a think aloud and probing approach. They will be conducted by project staff with expertise in qualitative research and respective language proficiency. Interviewees will be recruited in general practices, hospitals and rehabilitation clinics with the help of cooperation partners with whom the applicant has worked in previous projects.The PictoQOL is expected to allow an easier assessment and better comparability of health-related quality of life in different population groups independent of their reading and writing proficiency. In terms of routine use in clinical practice, it is therefore expected to be superior to questionnaires currently available.

• DFG Programme: Research Grants