We adapted and tested a version of Skindex-16 that was suitable for oral administration to patients who speak Runyankore in Uganda. We found the instrument to be feasible to use, reliable, and to have considerable evidence of construct and content validity.
Measuring skin-related quality of life in Uganda with conventional written instruments developed in Western countries raises many challenges, including the cultural and socioeconomic context, relatively low literacy rates, and the predominance of the oral rather than written communication. Our study addresses this gap in available measurement tools, and results provide a practical way to determine skin-related quality of life in patients for whom a written instrument developed in a Western country would not be suitable. Moreover, these findings provide a basis for further studies of both the common and unique effects of skin diseases on the quality of life of Ugandan patients.
It is essential to do pre-test interviews of clinicians and staff to understand social issues surrounding skin disease such as stigma. From experienced clinicians, we learned that issues such as skin color change and concealment likely affect quality of life, possibly because they suggest syphilis and/or HIV. These interviews helped generate hypotheses that were used to test for construct validity of the adapted instrument.
Fidelity of translation is essential for the meaningful use of instruments in new populations. Direct translation of four of 16 items in the instrument from English to Runyankore was not possible. Interestingly, there were similar problems with the translation of “frustration” and “embarrassed” into both Turkish8
This problem was addressed by paraphrasing and then translating the items, achieving largely satisfactory semantic equivalence. No participant failed to answer questions in the instrument due to lack of understanding.
Oral delivery of measures of patient reports must be standardized and consistent to avoid bias. To achieve this, our research assistants were asked to adhere to the translated version of Skindex-16 with every study participant. We found that with trained research assistants, oral delivery of the Runyankore versions of Skindex-16 was feasible in busy clinic settings.
Measurement properties of the adapted instrument are acceptable. Cronbach α values of 0.7–0.8 are considered satisfactory for scales used as research tools to compare between groups.16
All three subscales of this instrument have had α values of 0.85–0.88, reflecting good internal consistency reliability. Construct validity was demonstrated by the fact that subjects responded in the way we had expected based on our prior hypotheses. Content validity was shown by the fact that the majority of responses to the open-ended question “In what way(s) does your skin condition(s) bother you?” were contained in Skindex-16.
The three most frequent responses to the open-ended question were sores, malodor, and swelling. These signs are likely associated with infections, which may account for a larger proportion of skin conditions in Uganda compared with the USA, where Skindex-16 was developed and validated. Our goal was to adapt a widely-used generic tool for dermatologic research in Mbarara, Uganda. In the future, to provide a comprehensive understanding of overall quality-of-life effects of skin diseases in Uganda, items addressing these signs and others could be appended as a supplemental module to the parent Skindex.
Interestingly, 68% of non-patient participants had skin conditions for which they had not sought medical care. Their Skindex scores were lower than those of the patient group but higher than non-patient participants who did not report any skin conditions. Seeking health care may in itself be an indicator that a skin condition affects quality of life.
The sample size was relatively small and drawn from patients and visitors of a teaching hospital and so may not be completely typical of the average Ugandan person. The study participants were relatively young adults (median age of 25 and 30 years for patient and non-patient groups, respectively). This reflects World Health Organization statistics of life expectancy of 49 and 51 years for men and women, respectively, in Uganda.17
Also, there was a greater proportion of women in the non-patient group. The non-patient group was randomly sampled from hospital visitors, many of whom were there to care for their relatives. Women are probably more likely to be caregivers, hence the greater proportion of women in this group. Men may respond differently to quality-of-life issues as a result of their skin conditions, and their relative lack of representation in the non-patient group may have affected the overall response profile of the group.
In conclusion, the culturally adapted and orally delivered Runyankore version of Skindex-16 is reliable and has construct and content validity. It is feasible for use in dermatology research in Mbarara, Uganda. The oral administration of Skindex-16 or any other quality of life instrument has potential to be very useful for conducting research in groups of people with low literacy levels across the world. The reliability and validity of orally administered instruments could first be evaluated in the original language of the instrument, avoiding translation difficulties. In the case of Skindex-16, further studies evaluating its oral administration in English would be valuable in assessing the effects of skin disease on quality of life in communities with low literacy rates in the USA and UK whose healthcare needs may be chronically underserved.