The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials

Kirby, Joslyn S.; Thorlacius, Linnea; Villumsen, Bente; Ingram, John R.; Garg, Amit; Butt, Melissa; Esmann, Solveig; Tan, Jerry; Jemec, Gregor B. E.

doi:10.1111/bjd.18692

Cited by 72 publications

(98 citation statements)

References 51 publications

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“…While disease-specific (e.g. HS Quality of Life [HS-QoL and HiSQOL] and HIDRAdisk [17][18][19][20]) and skin-specific HRQoL measures (e.g. Dermatology Life Quality Index, DLQI and Skindex instruments) are widely used in patients with HS [15], less empirical research has been conducted on general HRQoL in this patient population.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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Purpose Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects up to 1% of the population in Europe. The EQ-5D is the most commonly used generic instrument for measuring health-related quality of life among HS patients. This study aims to compare the measurement properties of the two adult versions of EQ-5D (EQ-5D-3L and EQ-5D-5L) in patients with HS. Methods We recruited 200 consecutive patients with HS (mean age 37 years, 38% severe or very severe HS) to participate in a multicentre cross-sectional survey. Patients completed the EQ-5D-3L, EQ-5D-5L, Dermatology Life Quality Index (DLQI) and Skindex-16 questionnaires. Results More than twice as many different health state profiles occurred in the EQ-5D-5L compared to the EQ-5D-3L (101 vs. 43). A significant reduction in ceiling effect was found for the mobility, self-care and usual activities dimensions. A good agreement was established between the EQ-5D-3L and EQ-5D-5L with an intraclass correlation coefficient of 0.872 (95% CI 0.830–0.903; p < 0.001) that was confirmed by a Bland-Altman plot. EQ-5D-5L improved both the absolute and relative informativity in all dimensions except for anxiety/depression. EQ-5D-3L and EQ-5D-5L demonstrated similar convergent validity with DLQI and Skindex-16. EQ-5D-5L was able to better discriminate between known groups of patients based on the number of comorbidities and disease severity (HS-Physician's Global Assessment). Conclusion In patients with HS, the EQ-5D-5L outperformed the EQ-5D-3L in feasibility, ceiling effects, informativity and known-groups validity for many important clinical characteristics. We recommend using the EQ-5D-5L in HS patients across various settings, including clinical care, research and economic evaluations.

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Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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“…Recently, we have witnessed an intensive development of new HS‐specific HRQoL instruments specifically targeting clinical trials and consultations [e.g. HS Quality of Life (HiSQOL and HS‐QoL) and HIDRAdisk] 13–16 . Nevertheless, clinical trials and observational studies need results on multiple HRQoL measures, including disease‐specific, skin‐specific and generic instruments, to precisely evaluate health status of patients and response to treatments, to ensure comparability across studies and to provide input data for economic evaluations of treatments.…”

Section: Introductionmentioning

confidence: 99%

Validity of EQ‐5D‐5L, Skindex‐16, DLQI and DLQI‐R in patients with hidradenitis suppurativa

Gergely

Gáspár

Brodszky

et al. 2020

Acad Dermatol Venereol

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Background Numerous generic, skin-and disease-specific health-related quality of life (HRQoL) measures are available for patients with hidradenitis suppurativa (HS). Yet, robust psychometric evidence is lacking in many aspects of these outcome measures. Objectives We sought to determine convergent and known-groups validity of multiple generic and skin-specific HRQoL measures and to identify predictors of impaired HRQoL in patients with HS. Methods Between 2017 and 2019, a multicentre cross-sectional study was carried out involving 200 consecutive HS patients. HRQoL outcomes included the EQ-5D-5L, EQ visual analogue scale (EQ VAS), Skindex-16, Dermatology Life Quality Index (DLQI) and DLQI-Relevant (DLQI-R). Disease severity was graded by HS-Physician's Global Assessment (HS-PGA) scale and the Modified Sartorius scale (MSS). Results Overall, 77%, 56%, 51%, 46% and 28% reported problems in the pain/discomfort, usual activities, anxiety/ depression, mobility and self-care dimensions of EQ-5D-5L.

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“…The reproducibility of the instrument was evaluated with the use of ICC. We achieved an excellent reproducibility with the value of ICC of 0.97 for the whole questionnaire, which was actually even higher than in the original version (0.90) [19].…”

Section: Discussionmentioning

confidence: 60%

Hidradenitis Suppurativa Quality of Life (HiSQOL): creation and validation of the Polish language version

Krajewski¹,

Matusiak²,

Szepietowska³

et al. 2021

pdia

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Introduction: Hidradenitis suppurativa (HS) is a chronic, inflammatory and painful cutaneous disease which often has a negative influence on patients' quality of life. Dermatology-specific instruments, such as Dermatology Life Quality Index and Skindex, are commonly used to evaluate HS patients' quality of life. However, due to the lack of specific questions, these scales may not be adequate and may not reflect the real problem. Aim: To translate and validate the Polish version of a newly created HS-specific questionnaire-Hidradenitis Suppurativa Quality of Life (HiSQOL). Material and methods: A forward and backward translation was conducted from the original English version of the questionnaire to Polish language according to international standards. The validation was performed on a group of 30 patients suffering from HS, who completed the questionnaire twice with a 4-5 days' interval. Results: The Polish version of HiSQOL questionnaire showed a very good internal consistency (Cronbach α coefficient was 0.96 for total score). Excellent reproducibility with the intraclass correlation coefficient (ICC) of 0.97 was demonstrated. Conclusions: The Polish version of HiSQOL questionnaire has high internal reliability, validity and reproducibility. It can be used as a tool to assess health-related quality of life in the patients suffering from hidradenitis suppurativa.

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The Hidradenitis Suppurativa Quality of Life (HiSQOL) score: development and validation of a measure for clinical trials

Cited by 72 publications

References 51 publications

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

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

Validity of EQ‐5D‐5L, Skindex‐16, DLQI and DLQI‐R in patients with hidradenitis suppurativa

Hidradenitis Suppurativa Quality of Life (HiSQOL): creation and validation of the Polish language version

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