Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa

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

doi:10.1016/j.ad.2019.02.002

Cited by 13 publications

(4 citation statements)

References 22 publications

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“…The tool used most frequently to assess patients’ QoL is the DLQI. Recently, disease specific instruments to assess quality of life in HS have been developed [ 14 ], such as the HSQoL-24 validated in the Spanish population [ 15 ]. Other questionnaires also employed to evaluate psychosocial and physical functioning in HS are Skindex, the EuroQol 5 Dimensions questionnaire (EQ-5D) and the Short Form 36 questionnaire (SF-36).…”

Section: Introductionmentioning

confidence: 99%

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

Montero‐Vílchez

Díaz-Calvillo

Rodríguez-Pozo

et al. 2021

IJERPH

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Hidradenitis suppurativa (HS) is a chronic, recurrent and debilitating inflammatory skin disease of the hair follicle that usually presents as painful, deep-seated inflamed lesions in the apocrine gland-bearing areas of the body. HS patients suffer from uncomfortable signs and symptoms, such as pain, pruritus, malodour and suppuration, which may impair patients’ quality of life (QoL). Although HS patients frequently experience these signs and symptoms, they are only occasionally assessed by clinicians and, unexpectedly, the scientific evidence available is limited and heterogeneous. The aim of this study is to summarize the evidence regarding the impact of HS signs and symptoms on QoL to serve as a basis for future research and help clinicians to consider them in the daily care of HS patients. A systematic review and meta-analysis were conducted following PRISMA Guidelines. The following search algorithm was used: (hidradenitis or “acne inversa”) and (pain or itch or odour or malodour or suppuration or oozing or drainage) and (“quality of life”). The literature search identified 836 references, 17 of them met the eligible criteria and were included for analysis, representing 4929 HS patients. Mean age of the participants was 36.28 years and there was a predominance of female sex among study participants. The BMI of the population was in the range of over-weight and about two out five patients were active smokers. Studies included patients with mild to moderate HS, with a mean disease duration of 13.69 years. The HS signs and symptoms assessed were pain, pruritus, malodour and suppuration. Overall, the higher intensity of a sign or symptom correlated with poorer general QoL or specific QoL dimensions including sexual distress, anxiety, depression and sleep. The most frequently employed tool to assess QoL was the Dermatology Life Quality Index (DLQI). DLQI was used in 52.9% of the studies (9/17) with a mean value of 10.70 (2.16 SD). The scores employed to assess signs and symptoms severity were subjective and varied between studies, being the numerical rating scale (NRS) for each of the most used symptoms. The mean NRS value for pain was 3.99 and the mean NRS for pruritus was 4.99. In conclusion, we have summarized, categorized and analyzed the scientific evidence regarding signs and symptoms in HS patients and their impairment in QoL. Their assessment should be thorough and included during routine evaluation of HS patients to motivate therapeutic modifications and increase patients’ health.

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Section: Introductionmentioning

confidence: 99%

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

Montero‐Vílchez

Díaz-Calvillo

Rodríguez-Pozo

et al. 2021

IJERPH

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“…The HiSQoL and the HS-QoL-24 are the most widely used HRQoLs for HS, as they have a usable number of items (17 and 24) and use 5-point Likert scales. In comparison with the QoL-HS, the recall period of the HSQoL-24 is 4 weeks ( 28 ) and the HiSQoL was explicitly developed and tested for clinical trials. That is why it only includes items with “concepts related to active disease”, while “concepts related to secondary skin damage” (e.g.…”

Section: Discussionmentioning

confidence: 99%

“…scarring) were excluded ( 42 ). Most of the existing tools only conducted qualitative development studies ( 29 ), pilot testing ( 23 , 26 ), or only included 30 ( 28 ) to 40 ( 25 ) patients within the validation procedure. The development and validation of the QoL-HS included both qualitative and quantitative approaches with a statistically appropriate sample size, resulting in a valid instrument with no restrictions related to content or scope of application.…”

Section: Discussionmentioning

confidence: 99%

Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research

et al. 2023

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Hidradenitis suppurativa is a chronic disease that disrupts patients’ physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0–4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach’s alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.

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“…Finally, it is well known how HS may have a significant impairment of patients' quality of life (QoL). Therefore, specific QoL tools have been developed and validated for HS: HiSQOL [30], HSQoL-24 [31], and patient-reported outcome (PRO) questionnaires [32]. Recently, a new graphical tool able to better describe HS burden, the so-called HIDRAdisk, has been introduced [33,34].…”

Section: Severity Assessmentmentioning

confidence: 99%

Hidradenitis Suppurativa: Where We Are and Where We Are Going

Scala

Cacciapuoti

Garzorz‐Stark

et al. 2021

Cells

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Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease primarily affecting apocrine gland-rich areas of the body. It is a multifactorial disease in which genetic and environmental factors play a key role. The primary defect in HS pathophysiology involves follicular occlusion of the folliculopilosebaceous unit, followed by follicular rupture and immune responses. Innate pro-inflammatory cytokines (e.g., IL-1β, and TNF-α); mediators of activated T helper (Th)1 and Th17 cells (e.g., IFN-γ, and IL-17); and effector mechanisms of neutrophilic granulocytes, macrophages, and plasma cells are involved. On the other hand, HS lesions contain anti-inflammatory mediators (e.g., IL-10) and show limited activity of Th22 cells. The inflammatory vicious circle finally results in pain, purulence, tissue destruction, and scarring. HS pathogenesis is still enigmatic, and a valid animal model for HS is currently not available. All these aspects represent a challenge for the development of therapeutic approaches, which are urgently needed for this debilitating disease. Available treatments are limited, mostly off-label, and surgical interventions are often required to achieve remission. In this paper, we provide an overview of the current knowledge surrounding HS, including the diagnosis, pathogenesis, treatments, and existing translational studies.

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Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa

Abstract: Cómo citar este artículo: Marrón SE, et al. Desarrollo y validación preliminar del instrumento HSQoL-24 para evaluar calidad de vida en pacientes con hidradenitis supurativa. Actas Dermosifiliogr. 2019.

Cited by 13 publications

References 22 publications

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

The Burden of Hidradenitis Suppurativa Signs and Symptoms in Quality of Life: Systematic Review and Meta-Analysis

Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research

Hidradenitis Suppurativa: Where We Are and Where We Are Going

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