The measurement performance of the EQ-5D-5L versus EQ-5D-3L in patients with hidradenitis suppurativa
Alex BatóValentin BrodszkyL GergelyKrisztián GáspárNorbert WikonkálÁgnes KinyóÁkos SzabóZsuzsanna BeretzkyAndrea SzegediÉva RemenyikNorbert KissMiklós SárdyFanni Rencz
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Abstract 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.Keywords:
EQ-5D
Hidradenitis Suppurativa
Ceiling effect
Depression
Hidradenitis suppurativa is a chronic skin disease characterized by inflammation and disfiguring scarring in the intertriginous body areas. Hidradenitis suppurativa is associated with overweight and impaired quality of life. This study sought to describe Body Image Quality of Life (BI-QoL) in patients with hidradenitis suppurativa and to compare it with patients with other skin diseases (controls). A total of 285 participants were recruited, 141 with hidradenitis suppurativa and 144 controls, at the Department of Dermatology at Zealand University Hospital, Denmark (during 2017-18). The Danish "Body Image Quality of Life Inventory" questionnaire measured BI-QoL. Patients with hidradenitis suppurativa had significantly lower mean BI-QoL than controls: Hidradenitis suppurativa BI-QoL (standard deviation; SD) -0.87 (0.98) vs. control BI-QoL (SD) 0.01 (1.11), p < 0.001. Predictors of negative BI-QoL were hidradenitis suppurativa, increased body mass index, female sex, symptoms of depression, and body mass index moderated by hidradenitis suppurativa. These data suggest that BI-QoL is impaired in patients with hidradenitis suppurativa compared with patients with other skin diseases after adjusting for confounders.
Hidradenitis Suppurativa
Intertriginous
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EQ-5D
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Convergent validity
Ceiling (cloud)
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Background: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that affects the quality of life (QoL) of afflicted patients. This current study was designed to assess the QoL of first‐degree relatives of HS patients and the various associated parameters. Methods: We conducted this cross‐sectional study at the Outpatient Dermatology Clinics of Shahid Faghihi Hospital and Imam Reza Clinic, affiliated with Shiraz University of Medical Sciences, Shiraz, Iran, from 2021 to 2022. Thirty‐nine first‐degree relatives of thirty‐nine patients with HS were selected to enter this cross‐sectional study, through the census sampling method. The Family Dermatology Life Quality Index (FDLQI) was used to determine the scores. Results: A total of 39 patients (24 men and 15 women) with HS were included in the present study. The mean total score of the FDLQI questionnaire was 9.10 ± 6.77, which indicates a moderate impact on the QoL of the first‐degree relatives of HS patients. In HS patients with underlying diseases, FDLQI scores were greater. Other first‐degree relatives had a higher average overall FDLQI score than the patient’s spouse. Comorbid first‐degree relatives showed considerably higher FDLQI scores than those without. FDLQI scores increased with first‐kin age. Conclusion: The FDLQI score of first‐degree relatives of HS patients is considerably affected by any other underlying condition. Additionally, FDLQI scores were substantially associated with the first‐degree relative’s relationship with the patient (spouse vs. other relation) and the patient’s and relative’s underlying diseases.
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The EuroQol-5 Dimension (EQ-5D), developed in 1990, is a most widely used generic tool to measure the health-related quality of life (HRQoL) and considered suitable for patients with asthma. In 2009, the EuroQol Group developed a new EQ-5D version to overcome limitations related to its consistently reported high ceiling effect. To enhance the sensitivity for assessing the HRQoL in further patient populations, the number of responses of EQ-5D was increased from 3 to 5 levels (EQ-5D-5L). Moreover, the availability of well-defined requirements for its Web-based administration allows EQ-5D-5L use to monitor the HRQoL in electronic health (eHealth) programs. No study has evaluated the metric properties of the new EQ-5D-5L in patients with asthma yet.This study aims to examine the distribution, construct validity, and reliability of the new EQ-5D-5L questionnaire administered online to adults with asthma.We evaluated patients with asthma (age: 18-40 years) from a primary care setting in France and England, who self-completed the EQ-5D-5L questionnaire online. The inclusion criteria were persistent asthma defined as >6 months of prescribed inhaled corticosteroids and long-acting beta-agonists or inhaled corticosteroids alone during the 12 months prior to inclusion. The EQ-5D index was obtained by applying the English preference value set for the new EQ-5D-5L and the French 3L-5L crosswalk value set. Both value sets produced single preference-based indices ranging from 1 (best health state) to negative values (health states valued as worse than death), where 0=death, allowing the calculation of quality-adjusted life years. Responses to dimensions and index distribution, including ceiling and floor effects, were examined. The construct validity was assessed by comparing the means of known groups by analyses of variance and calculation of effect sizes.Of 312 patients answering the baseline Web-based survey, 290 completed the EQ-5D-5L (93%). The floor effect was null, and the ceiling effect was 26.5% (74/279). The mean EQ-5D-5L index was 0.88 (SD 0.14) with the English value set and 0.83 (SD 0.19) with the French 3L-5L crosswalk value set. In both indices, large effect sizes were observed for known groups defined by the Asthma Control Questionnaire (1.06 and 1.04, P<.001). Differences between extreme groups defined by chronic conditions (P=.002 and P=.003 for the English value set and French 3L-5L crosswalk value set, respectively), short-acting beta-agonists (SABAs) canisters in the last 12 months (P=.02 and P=.03), or SABA use during the previous 4 weeks (P=.03 and P=.01) were of moderate magnitude with effect sizes around 0.5.The new EQ-5D-5L questionnaire has an acceptable ceiling effect, a good construct validity based on the discriminant ability for distinguishing among health-related known groups, and high reliability, supporting its adequacy for assessing the HRQoL in patients with asthma. EQ-5D-5L completion by most Web-based respondents supports the feasibility of this administration form.
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Health Utilities Index
Cross-sectional study
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Disutility reflects the disability caused by a disease. The EuroQoL-5D (EQ-5D) questionnaire is a measure of health-related overall utility. The questionnaire has only been applied previously to a small number of patients with hidradenitis. In this study a survey of 421 patients with hidradenitis suppurativa was conducted using the EQ-5D questionnaire. Questions regarding pain, malodour and pruritus were included to determine quantitatively whether these factors are associated with low EQ-5D index and visual analogue scale (VAS) scores. The index and VAS scores obtained were compared with reference values for the general population in Denmark. A significantly decreased utility in patients with hidradenitis suppurativa was found for all age group levels, except for 65-74-year-olds. The total index score in the cohort was 0.705 (population mean 0.887) and the VAS was 62.25 (population mean 82.6). Multivariate analysis found significant associations between loss of utility and pain, malodour and pruritus (p < 0.0001). Patients with hidradenitis suppurativa had a significantly decreased EQ-5D compared with the background population. Malodour and pruritus were found to be associated with low index values, and pain and malodour with low VAS. Patient-reported pain and discomfort had the most negative overall effect on mean index scores.
Hidradenitis Suppurativa
EQ-5D
Cross-sectional study
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INTRODUCTION:
Hidradenitis suppurativa is a chronic debilitating inflammatory disease caused by follicular occlusion due to hyperkeratosis. It is known to cause significant physical and psychological morbidity. The effect of hidradenitis suppurativa on the quality of life in Indian population has not been previously studied.
OBJECTIVES:
1. To describe the clinical profile of patients with HS.
2. To assess the quality of life of patients with HS using DLQI (Dermatology Quality of Life Index).
3. To evaluate correlation of inflammatory markers with disease severity of HS.
METHODS:
This is a descriptive cross-sectional study in which fifty two patients with hidradenitis suppurativa were enrolled during the study period between October 2016 and September 2018. There clinical profiling was done and quality of life was measured using DLQI (Dermatology Quality of Life Index) questionnaire. Serum CRP levels were sent to look for correlation with severity of disease.
RESULTS:
Fifty two patients participated in the study. There were equal number and males and females. The mean age of the participants was 28.98 ± 10.61 years. The mean age of onset was 23.23 ± 9.98 years. The mean duration of the disease was 5.9 ± 4.39 years and the mean frequency of episodes was 7.12 episodes per year. There were 36 patients(69.2%) with stage I disease and 12 (23.08%), 4 (7.69%) with stage II and stage III disease respectively. The most common sites of involvement were axillae, followed by groin then gluteal region, perineum, intermammary, inframammary and retroauricular regions. The mean DLQI score was 10.73 ± 7.85. The mean BMI of the study population was 27.54 ± 4.55 kg/m2. The majority of patients (40.38%) were overweight while 32.69% were obese, but there was no significant correlation between BMI with severityof the disease. The mean CRP was found to be 10.12 ± 15.49 and CRP was found to be significantly raised in severe stages of the disease.
CONCLUSION:
The quality of life of patients with hidradenitis suppurativa was found to be significantly affected especially in severe diseases as shown by the mean DLQI value. CRP was found to be raised in severe stages of the disease.
Hidradenitis Suppurativa
Groin
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Hidradenitis suppurativa is a recurrent, debilitating suppurative skin disease. The symptoms are much more than just physical, but studies of its impact on patients' psychological state and related quality of life are very limited. The current study was conducted with a group of 54 patients, aged 16-65 years, who had an active, but stable, course of hidradenitis suppurativa. The aim of the study was to determine the influence of hidradenitis suppurativa on a broad spectrum of psychophysical factors. Assessment was carried out using several questionnaires, which revealed the following mean scores: Dermatology Life Quality Index (DLQI) (12.67 +/- 7.7), Beck Depression Inventory-Short Form (BDI-SF) (5.87 +/- 4.68), Evers et al. "6-Item Scale" (3.87 +/- 3.65), EQ-5D (0.66 +/- 0.23 (health index) and 56.78 +/- 18.84 (VAS)), Functional Assessment of Chronic Illness Therapy - Fatigue scale (FACIT-F) (32.06 +/- 11.01) and Quality of Life Enjoyment and Satisfaction Questionnaire Short Form (Q-LES-Q-SF) (56.44 +/- 15.17%). The results highlight the important impact of hidradenitis suppurativa on a wide spectrum of psychophysical aspects and impairment of related quality of life among patients. Our findings indicate that advancement of the disease seems to be the most important factor negatively influencing patients' well-being (p < 0.01). It is noteworthy that an anogenital location appears to impair the hidradenitis suppurativa patients' quality of life most of all (p < 0.05), but the occurrence of lesions on uncovered skin plays a crucial role in the stigmatization level (p < 0.05).
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Depression
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Hidradenitis Suppurativa
EQ-5D
Ceiling effect
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Abstract Background Hidradenitis suppurativa (HS) is a painful chronic, recurrent inflammatory skin disease with great impact on health‐related quality of life (HRQOL). Recently, Hidradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) established HRQOL as a core domain set for HS clinical trials and developed the Hidradenitis Suppurativa Quality of Life (HiSQOL) as a validated outcome measurement instrument. Objectives To provide further convergent validity of HiSQOL by comparing it to Dermatology Life Quality Index (DLQI) and Pictorial Representation of Illness and Self Measure‐Revised 2 (PRISM‐R2). Methods In this cross‐sectional study, 103 participants completed HiSQOL, PRISM‐R2 and DLQI. PRISM‐R2 is an instrument designed to measure suffering and reports the two measures, Illness Perception Measure (IPM) and Self‐Illness Separation (SIS). Correlation analyses were performed including a sub‐analysis for a subgroup of patients with high scores in the HS‐specific domains of HiSQOL. Results A very strong correlation was found between HiSQOL and DLQI (ρ = 0.93, P < 2.2 × 10 −16 , (95% CI: 0.89;0.95)), and moderately strong correlations were found between HiSQOL and SIS (ρ = −0.73, P < 2.2 × 10 −16 , (95% CI: −0.81; −0.62)) and DLQI and SIS (ρ = −0.70, P < 2.2 × 10 −16 , (95% CI: −0.79; −0.59)). IPM was positively associated with HiSQOL and DLQI and negatively with SIS. Conclusions HiSQOL is a valid measure of quality of life for HS patients, and we suggest that HiSQOL can be used as a measure of suffering as well.
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Convergent validity
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