GD07: The use of the Dermatology Life Quality Index suite of patient-reported outcome measures in neglected tropical diseases of the skin: a systematic review

Muhammad Hyder Junejo,¹ Jaina Patel,² Emma Duus,² Oluwatobiloba Oyebanji² and Stephen Walker^3,4,5

¹Department of Dermatology, Royal London Hospital; ²Barts and The London School of Medicine and Dentistry; ³Department of Dermatology, University College London Hospitals NHS Foundation Trust; ⁴Hospital for Tropical Diseases, University College London Hospitals NHS Foundation Trust; and ⁵Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, London, UK

Neglected tropical diseases (NTDs) of the skin are a significant cause of disabling physical and psychological morbidity, disproportionately affecting impoverished and marginalized communities. The most commonly used patient-reported outcome measure (PROM) in dermatology is the Dermatology Life Quality Index (DLQI). The DLQI is available in more than 125 translations but only nine African languages. The DLQI has not been validated in NTDs of the skin but has been in podoconiosis. We wished to determine the use of the various versions of the DLQI in the assessment of individuals with NTDs of the skin and the extent to which appropriate, validated versions have been used. Two databases (MEDLINE and Embase) were searched using key terms, including DLQI and the individual NTDs of the skin. We also included studies of podoconiosis. Studies were excluded if they were not conducted in an endemic country. Following de-duplication, 127 studies were screened and 86 were deemed suitable for full-text review of which 53 met the inclusion criteria. Most studies were conducted in the World Health Organization South-East Asian Region (n = 16), followed by the African Region (n = 11); Region of the Americas (n = 10); Western Pacific Region (n = 8); Eastern Mediterranean Region (n = 7) and European Region (n = 1). The DLQI was used in 47 studies and the Children’s DLQI in seven. The diseases, number of participants and the range of DLQI scores are shown in the Table. Of 53 studies, 31 (58%) did not specify use of a validated DLQI in the study participants’ first language. Participants completed the DLQI themselves in eight (15%) studies, interviewers completed them on behalf of participants in nine (17%) studies, both approaches were used in five (9%) studies and in 31 (58%) it was not specified. The DLQI scores of participants in the included studies suggest that most NTDs of the skin are associated with severe impact on health-related quality of life (HRQoL). The DLQI is easy to use and the scores are easy to interpret. Assessments of HRQoL in people with NTDs of the skin are vital in advocating for quality care. Researchers, where possible, should use validated, culturally appropriate translations to ensure that HRQoL associated with NTDs of the skin is assessed as accurately as possible.