“DLQI Seems to be ‘Action’, and Skindex-29 Seems to be ‘Emotion’”: Qualitative Study of the Perceptions of Patients with Psoriasis or Eczema on Two Common Dermatology-specific Quality of Life Measures

Abstract

People with chronic skin conditions often experience impairments in their quality of life. Several questionnaires exist for measuring quality of life in skin disease, e.g. the Dermatology Life Quality Index (DLQI) and Skindex-29. In this study we asked 28 patients with eczema or psoriasis to what degree these two measures capture what matters to them. Overall, the patients felt that Skindex-29 better captured their lived experience due to its items on emotions, a longer recall period of 4 weeks and greater ease of understanding. However, both DLQI and Skindex-29 lack important content such as impact of disease on professional relationships. Little is known about which quality of life measure best captures the lived experience of people with a chronic skin condition. The purpose of this study was to explore patients' views on the Dermatology Life Quality Index (DLQI) and Skindex-29. Participants were adults (n = 28) with a diagnosis of eczema or psoriasis who completed the DLQI and the Skindex-29 before being interviewed about the content and format of these questionnaires. Interviews were analysed using content analysis. Participants were generally satisfied with length and layout of both questionnaires. However, the majority preferred the Skindex-29 for its ease of understanding, use of a longer recall period and incorporation of items on a variety of emotions. Participants reported both questionnaires failing to incorporate important aspects of their lives, for instance impact on professional relationships. Participants voiced limitations in both measures but overall felt Skindex-29 better captured their lived experience.

The measurement performance of the EQ-5D-5L versus EQ-5D-3L in patients with hidradenitis suppurativa

“…For quantifying skin-specific HRQoL, we used Dermatology Life Quality Index (DLQI) and Skindex-16. These two skin-specific instruments assess quite different areas of HRQoL: while the DLQI mainly focuses on functional impairments, Skindex-16 is considered better at capturing the emotional and mental aspects of the skin disease [45,46].…”

A comparative study on the measurement properties of Dermatology Life Quality Index (DLQI), DLQI‐Relevant and Skindex‐16*

“…However, the DLQI mainly focuses on functional impairments as a result of the dermatological condition, and has been reported to fail in addressing the emotional and mental impact of the disease 13 . In contrast, items of the Skindex instruments, including Skindex‐16, are better at capturing the emotional and mental problems related to dermatological conditions 17,18 …”

“…13 In contrast, items of the Skindex instruments, including Skindex-16, are better at capturing the emotional and mental problems related to dermatological conditions. 17,18 Few studies have provided empirical evidence on measurement performance of the DLQI vs. Skindex-16. In patients with hand-foot syndrome, vitiligo, hidradenitis suppurativa and melasma, Skindex-16 exhibited slightly better convergent validity with condition-specific HRQoL questionnaires and slightly worse convergent validity with generic HRQoL questionnaires than the DLQI.…”

Questionnaire Modifications and Alternative Scoring Methods of the Dermatology Life Quality Index: A Systematic Review

“…However, 2 studies reported differential item functioning for the DLQI between patients with different diagnoses implying that the DLQI scores should not be compared across different patient populations. 22,24 Furthermore, some argued that the DLQI is not able capture the full range of HRQoL in certain conditions 99,100 as also testified by the many bolt-on items identified in this review. For example, sleep disturbance or mental problems may contribute to the HRQoL impairment in many skin diseases that remains unexplored by using the DLQI.…”