Development and Preliminary Validation of the HSQoL-24 Tool to Assess Quality of Life in Patients With Hidradenitis Suppurativa

Marrón, S.E.; Gómez-Barrera, Manuel; Aragonés, Lucía Tomás; Díaz, Rosa; Rull, E. Vilarrasa; Álvarez, M.B. Madrid; Puig, Luís

doi:10.1016/j.adengl.2019.07.014

Cited by 10 publications

(24 citation statements)

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“…There has been a burst of activity to address the need for an HS‐specific HRQOL instrument, and several instruments, as reviewed by Chernyshov et al ., have recently been developed. Each instrument has strengths and limitations, such as limited evidence of validity and/or reliability or prolonged recall period . Also, the focus of the core outcome set is to ensure rigorous measurement in interventional clinical trials, so some constructs such as scarring, skin damage or body image may be less amenable to change in the shorter time frame of clinical trials.…”

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confidence: 99%

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

et al. 2019

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Summary Background Hidradenitis suppurativa (HS) is a chronic, inflammatory condition that can have a large negative impact on health‐related quality of life (HRQOL). A reliable and validated measure of HS‐specific HRQOL in clinical studies is needed. Objectives To develop and validate the Hidradenitis Suppurativa Quality Of Life (HiSQOL©) scale, for clinical trial measurement of HS‐specific HRQOL. Methods In stage 1, qualitative concept elicitation interviews were conducted with patients with HS in Denmark (n = 21) and the U.S.A. (n = 21). In stage 2, cognitive debriefing interviews were performed with U.S. (n = 30) and Danish patients with HS (n = 30). In stage 3 an observational study of 222 patients with HS in the U.S.A. was conducted for item reduction, measure validation and assessment of psychometric properties. In stage 4, an observational study of 215 patients with HS in Denmark was conducted to confirm the psychometric structure derived in stage 3. In both studies the Dermatology Life Quality Index, Hospital Anxiety and Depression Scale and numerical rating scale for pain were also included. Results In concept elicitation, 99 items were generated, which were reduced to 41 after removing duplicates. In cognitive debriefing, two items were added and one item removed. A 42‐item instrument was psychometrically assessed. Based on psychometric analyses and patient input, the instrument was reduced to 17 items that had strong psychometric properties in both the U.S. and Danish samples. Conclusions The HiSQOL is a reliable and valid instrument to measure HS‐specific HRQOL in clinical trials.

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confidence: 99%

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

et al. 2019

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“…However, our framework analysis is a well-adapted methodology to research this complex health issue using specific questions, key themes and a limited time frame. 1 , 5 , 9 , 17 , 22 , 33 , 39 , 51 …”

Section: Discussionmentioning

confidence: 99%

“…Due to a methodological decision, we did not include surgical treatments in the present review, but it seems important to note that the paucity of solid evidence also applies to surgical approaches for HS. 1 , 5 , 16 , 17 , 22 , 33 , 53 , 56 – 59…”

Section: Discussionmentioning

confidence: 99%

Therapies for hidradenitis suppurativa: a systematic review with a focus on Brazil

Machado¹,

Magalhães²,

Silva³

et al. 2022

DIC

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In the interest of transparency, we ask you to disclose all relationships/activities/interests listed below that are related to the content of your manuscript. "Related" means any relation with for-profit or not-for-profit third parties whose interests may be affected by the content of the manuscript. Disclosure represents a commitment to transparency and does not necessarily indicate a bias. If you are in doubt about whether to list a relationship/activity/interest, it is preferable that you do so.In the interest of transparency, we ask you to disclose all relationships/activities/interests listed below that are related to the content of your manuscript. "Related" means any relation with for-profit or not-for-profit third parties whose interests may be affected by the content of the manuscript. Disclosure represents a commitment to transparency and does not necessarily indicate a bias. If you are in doubt about whether to list a relationship/activity/interest, it is preferable that you do so.The author's relationships/activities/interests should be defined broadly. For example, if your manuscript pertains to the epidemiology of hypertension, you should declare all relationships with manufacturers of antihypertensive medication, even if that medication is not mentioned in the manuscript.In item #1 below, report all support for the work reported in this manuscript without time limit. For all other items, the time frame for disclosure is the past 36 months. Name all entities with whom you have this relationship or indicate none (add rows as needed) Specifications/Comments (e.g., if payments were made to you or to your institution) Time frame: Since the initial planning of the work 1 All support for the present manuscript (e.g., funding, provision of study materials, medical writing, article processing charges, etc.) No time limit for this item.

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“…In order to evaluate the influence of the disease on the patients' quality of life, all the participants were asked to complete the Hidradenitis Suppurativa Quality of Life-24 (HSQoL-24) questionnaire [8,9], a new Spanish HS-specific questionnaire which was also recently translated into and validated in English [9]. The instrument was a self-administered questionnaire consisting of 24 items that evaluate six life domains (psychosocial, economic, occupational, relationships, personal, and clinical) over a 4-week recall period [9].…”

Section: Quality Of Lifementioning

confidence: 99%

“…Newer methods of measuring the PROs of HS patients, although they have been developed, still do not fully reflect the physical aspects of the disease [7]. Recently, a new, promising HS-specific instrument called Hidradenitis Suppurativa Quality of Life-24 (HSQoL24) was developed, validated, and translated into English by Marrón et al [8,9].…”

Section: Introductionmentioning

confidence: 99%

The Use of HSQoL-24 in an Assessment of Quality-of-Life Impairment among Hidradenitis Suppurativa Patients: First Look at Real-Life Data

Krajewski

Marrón

Gómez-Barrera

et al. 2021

JCM

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Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder with well-documented effects on patients’ quality of life (QoL). The aim of this study was to evaluate the QoL of patients with HS via the use of a newly developed questionnaire: Hidradenitis Suppurativa Quality of Life-24 (HSQoL-24). This study was performed on a population of 342 HS patients. Their QoL was assessed via the HSQoL-24 questionnaire. The perceived impairment of QoL due to HS in the studied group was considered to be serious (mean HSQoL-24 score: 58.3 ± 21.0 points). Women tended to experience a significantly higher impact from the disease than men (61.6 ± 19.2 points vs. 51.1 ± 23.1 points, p < 0.001). The HS severity had an effect on the perceived QoL, with statistically significant differences being evident between the self-assessed HS severity groups. The level of QoL impairment correlated positively with the number of affected body areas (r = 0.285, p < 0.001) and the duration of the disease (r = 0.173, p = 0.001), while the patients’ age at disease onset correlated negatively with the HSQoL-24 global score (r = −0.182, p = 0.001). Patients living in their family house scored higher than other groups. The least affected were patients who lived alone. The study shows that the HSQoL-24 questionnaire is a reliable, HS-specific tool for measuring the QoL among patients with HS in real-life clinical settings.

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Development and Preliminary Validation of the HSQoL-24 Tool to Assess Quality of Life in Patients With Hidradenitis Suppurativa

Cited by 10 publications

References 20 publications

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

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

Therapies for hidradenitis suppurativa: a systematic review with a focus on Brazil

The Use of HSQoL-24 in an Assessment of Quality-of-Life Impairment among Hidradenitis Suppurativa Patients: First Look at Real-Life Data

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