Correlation of the refined Hurley classification for hidradenitis suppurativa with patient‐reported quality of life and objective disease severity assessment

2019 ◽  
Vol 180 (5) ◽  
pp. 1214-1220 ◽  
Author(s):  
A. Rondags ◽  
K.R. Straalen ◽  
J.R. Hasselt ◽  
I.C. Janse ◽  
C.B. Ardon ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Hidradenitis Suppurativa ◽  
Severity Assessment ◽  
Patient Reported

Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: A Systematic Review (Preprint)

2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Cory A. Dunnick ◽  
Robert Paul Dellavalle
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Disease Severity ◽  
Outcome Measures ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Clinical Score ◽  
Validity And Reliability ◽  
Patient Reported

BACKGROUND While there has been an increase in the number of randomized, controlled trials (RCTs) evaluating treatment efficacy for HS, instrument measurements of disease severity and quality of life (QoL) are varied, making compilation of data and comparison between studies a challenge for clinicians. OBJECTIVE The aim of this review is to evaluate trends in disease severity scales and patient reported outcome measures used in RCTs assessing treatment interventions among HS patients. METHODS A primary systematic literature review was conducted in August 2020. PubMed/MEDLINE, Embase, Web of Science, and Cochrane databases were used to identify all articles published from January 1964 to July 2020. The study was prospectively registered with PROSPERO (ID: 209582). Twenty-five articles were included in the systematic review. RESULTS Sartorius and modified Sartorius scores (n=8), and Hidradenitis Suppurativa Clinical score (HiSCs) (n=8) were the most commonly used instruments for disease severity. Participants’ pain, followed by Dermatology Life Quality Index (DLQI), were the most common QoL measures used in the reviewed studies. CONCLUSIONS Heterogeneity of data characterizing both the validity and reliability of existing outcome measures hinders interpretation and translation of the results from RCTs into clinical practice. Many of the QoL measures identified were not specific to HS and may not be representative of all factors impacting patients.

Association of Touch Avoidance with Disease Severity and Quality of Life in Psoriasis Patients

2017 ◽  
Vol 2 (3) ◽  
pp. 57-63 ◽  
Author(s):  
April W. Armstrong ◽  
Jennifer C. Cather ◽  
Carle F. Paul ◽  
Emily Edson-Heredia ◽  
Baojin Zhu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Linear Models ◽  
Logistic Models ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional ◽  
Patient Reported ◽  
Touch Avoidance ◽  
The Impact

Background and Objective Previous large studies have highlighted the impact of psoriasis on health-related quality of life (HRQoL) but not on interpersonal touch. This survey assessed the prevalence of touch avoidance among psoriasis patients, and its relationship to clinical characteristics and HRQoL. Methods Using an online, cross-sectional study with a standardized questionnaire, psoriasis patients reported their level of touch avoidance. The relationships between touch avoidance, patient-reported outcome measures, and patient demographics were analyzed using linear models for continuous outcomes and logistic models for categorical outcomes. Results Touch avoidance was reported by 48.2% of participants. Higher levels of touch avoidance were associated with worse HRQoL, depression, and itch outcomes (p<.001 for all). The strongest indicators of touch avoidance were HRQoL score (p<.001) and depression score (p<.001). Conclusion Nearly half of psoriasis patients report avoidance of touch. Those who had worse disease severity, HRQoL, and depression reported higher levels of touch avoidance.

scholarly journals Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures (Preprint)

10.2196/27869 ◽  
2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Robert Paul Dellavalle ◽  
Cory Dunnick
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Outcome Measures ◽  
Hidradenitis Suppurativa

Patient-reported symptoms are independent of disease severity in patients with primary varicose veins

Vascular ◽  
2011 ◽  
Vol 19 (5) ◽  
pp. 262-268 ◽  
Author(s):  
A M Conway ◽  
I M Nordon ◽  
R J Hinchliffe ◽  
M M Thompson ◽  
I M Loftus
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Varicose Vein ◽  
Clinical Severity ◽  
Patient Pathway ◽  
Venous Clinical Severity Score ◽  
Patient Reported ◽  
Pathologic Classification ◽  
Group A

The objective of this paper is to explore patterns of incompetence and disease distribution in patients with chronic venous disorders and to correlate this with CEAP (Clinical, Etiologic, Anatomic and Pathologic) classification and presenting symptoms to determine which features of chronic venous disorder (CVD) could be used to guide a patient pathway for referral and treatment. Consecutive patients attending a one-stop venous clinic at a university teaching hospital were recruited over a 12-month period. Patients were clinically assessed, assigned CEAP scores, duplex-scanned and categorized. Data were analyzed to identify associations between symptomatology and disease. Four hundred twenty-four limbs were divided into groups A (C2–3) (339) and B (C4–6) (85). The number of men, mean patient age, varicose vein diameter and quality-of-life score (Aberdeen Varicose Vein Questionnaire – AVVS) were significantly higher in group B ( P < 0.01). Ache occurred more commonly in group A and in women ( P < 0.01). Ache and pain were seen more frequently with saphenofemoral junction reflux ( P < 0.05). Group A women were more likely to be offered surgical intervention while men were managed conservatively ( P < 0.05). In conclusion, CVD symptoms are independent of disease severity assessed by CEAP score. Advanced disease is associated with larger venous diameters, older age and corresponds to a poorer quality of life. Objective markers such as CEAP, Venous Clinical Severity Score and AVVS should be used in determining a patient pathway for referral and treatment of CVD.

Baseline Characteristics of a National French E-Cohort of Hidradenitis Suppurativa in ComPaRe and Comparison with Other Large Hidradenitis Suppurativa Cohorts

Dermatology ◽  
2021 ◽  
pp. 1-11
Author(s):  
Morgane Condamina ◽  
Laetitia Penso ◽  
Viet-Thi Tran ◽  
Claire Hotz ◽  
Philippe Guillem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hidradenitis Suppurativa ◽  
Real Life ◽  
Epidemiological Studies ◽  
Scientific Data ◽  
Disease Stage ◽  
Treatment History ◽  
Patient Reported ◽  
History Of

<b><i>Background:</i></b> Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition substantially impacting patients’ quality of life; the pathogenesis remains unclear, and treatment is complex and not yet standardized. Observational data are increasingly being used to evaluate therapeutics in “real-life” interventions, and the development of e-cohorts is offering new tools for epidemiological studies at the population level. <b><i>Objective:</i></b> The aim of this study was to describe the clinical characteristics and treatment history of HS participants in the Community of Patients for Research (ComPaRe) cohort and to compare these to other cohorts. <b><i>Methods:</i></b> We performed a cross-sectional study of the baseline data of HS participants in ComPaRe, an e-cohort of patients with chronic diseases. Data were collected using patient-reported questionnaires about clinical-dem­ographic aspects, quality of life, and treatment history. <b><i>Results:</i></b> A total of 396 participants (339 females, 57 males) were included (mean age 38 years); 83 (21%) had a family history of HS, 227 (57.3%) were current smokers, and 241 (60.9%) were overweight or obese. Most of the participants declared a Hurley stage II (<i>n</i> = 263, 66.4%) or III (<i>n</i> = 76, 20.3%). The breast was more frequently affected in women than men (37.5 vs. 5.3%, <i>p</i> &#x3c; 0.0001), whereas the dorsal region was more frequently affected in men (39.5 vs. 10.9%, <i>p</i> &#x3c; 0.0001). Increased disease stage was associated with obesity (25.9 vs. 33.8 vs. 51.3%, <i>p</i> = 0.02) and some HS localizations (genital [<i>p</i> &#x3c; 0.005], pubis [<i>p</i> &#x3c; 0.007], gluteal fold [<i>p</i> = 0.02], and groin [<i>p</i> &#x3c; 0.0001]). The most frequently prescribed treatments were oral antibiotics (<i>n</i> = 362, 91.4%), especially amoxicillin-clavulanic acid and cyclins. Less than 10% of participants received biologics. Most of these results were consistent with previously published cohorts. <b><i>Conclusion:</i></b> Recruitment of participants by such a web platform can be a faster way to get relevant scientific data for a wide variety of patients that could be used for epidemiological studies and to evaluate therapeutics in “real-life” interventions.

scholarly journals Defining Sickle Cell Disease Severity Among Adults Hospitalized with Vaso-Occlusive Crisis

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 3577-3577
Author(s):  
Kimberly S Esham ◽  
Angie Mae Rodday ◽  
Nicole Savidge ◽  
Daqin Mao ◽  
Ruth Ann Weidner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Medical History ◽  
Disease Severity ◽  
Sickle Cell ◽  
Hospital Admissions ◽  
Pain Medication ◽  
Lung Damage ◽  
Patient Reported ◽  
Definition Of

Abstract Background: While there is no uniform definition of sickle cell disease (SCD) severity, vaso-occlusive crises (VOC) are the leading cause of emergency department (ED) visits and hospital admissions among adults with SCD and those with frequent hospital admissions constitute a subgroup more likely to have SCD-related complications. New patient-reported outcomes measures, such as the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me) Medical History Checklist (MHC), were developed in ambulatory populations to describe SCD severity based on patient-reported medical history. However, similar tools have not been used in adults with SCD hospitalized for VOC. We describe the development and performance of a medical history checklist, modeled off of the ASCQ-Me MHC, to assess disease severity among adults with SCD hospitalized with VOC. Methods: This retrospective cohort study consists of 41 adults with SCD hospitalized with VOC at a US-based academic medical center between 2013 and 2016. For the current analysis, the first hospitalization for VOC within the study window for each patient was selected. Demographic and SCD characteristics were abstracted from the electronic medical record (EMR) by trained research staff, and all SCD-complications were reviewed by two study hematologists. We utilized a 9-item checklist of SCD-related complications (history of lung damage, avascular necrosis, spleen damage, stroke, retinopathy, kidney disease, leg ulcers) and treatments (daily use of pain medication, receipt of an outpatient blood transfusion protocol) in accordance with a prior study by Keller et al. (Health and Quality of Life Outcomes, 2017; 15:117). However, rather than collecting information by patient self-report, we relied on abstraction of checklist items from EMR documentation of history of SCD-related complications in the year prior to the selected hospitalization, documentation of an outpatient transfusion protocol with receipt of transfusions within 3 months prior to hospitalization, and the admission reconciliation record of home pain medications. In the absence of a standard definition of SCD severity, we drew from ASCQ-Me methodology and scored the checklist as the sum of items from 0-9 and also categorized scores as low (<2 points), medium (=2 points), and high (>2 points) severity (Keller et al. Health and Quality of Life Outcomes, 2017; 15:117). Data were described with summary statistics (means, standard deviations, frequencies, percentiles). Results: The mean age was 26.8 years (SD 8.4) with 68% females. Patients were 71% black, non-Hispanic and 29% Hispanic. 90% of patients were publicly insured with 37% on disability (as indicated by Medicare insurance and age <65 years). The most common genotype was Hemoglobin (Hb) SS (71%), followed by Hb SC (19%) and Hb SB+ thalassemia (10%). 68% of patients were prescribed hydroxyurea. Nearly all patients were taking pain medication for SCD every day prior to hospital admission and most patients had documentation of lung damage (Table). The checklist mean score was 2.8 (SD 1.0, range 1-5), reflecting severe SCD among this hospitalized cohort of adults, with 64% of patients categorized as having high disease severity (checklist scores >2) at time of hospital admission for VOC. Conclusions: The high severity scores among this cohort supports the validity of employing a medical history checklist as a measure of disease severity, reflecting the cumulative end organ damage due to SCD and near universal need for daily pain medication among patients requiring inpatient admission for VOC. Two-thirds of patients were categorized as having high disease severity, driven primarily by daily pain medication use prior to hospitalization and pulmonary complications, consistent with a known subgroup of adults with SCD-related complications who are more likely to have lower health-related quality of life and account for higher healthcare utilization. Leveraging information readily available in the EMR, this type of checklist can yield a uniform and informative definition of SCD severity. In turn, this information can help identify the most severely affected patients as well as potential gaps in the delivery of quality care (e.g. pain medication, transfusions) to improve health outcomes among this vulnerable population. Disclosures Parsons: Seattle Genetics: Research Funding.

scholarly journals Patient Reported Outcome Measure in Atopic Dermatitis Patients Treated with Dupilumab: 52-Weeks Results

Life ◽  
2021 ◽  
Vol 11 (7) ◽  
pp. 617
Author(s):  
Servando E. Marron ◽  
Lucia Tomas-Aragones ◽  
Carlos A. Moncin-Torres ◽  
Manuel Gomez-Barrera ◽  
Francisco Javier Garcia-Latasa de Aranibar
Keyword(s):  
Quality Of Life ◽  
Atopic Dermatitis ◽  
Clinical Practice ◽  
Disease Severity ◽  
Stressful Life Events ◽  
Severe Disease ◽  
Patient Reported Outcome ◽  
Routine Clinical Practice ◽  
Patient Reported

Dupilumab is used to treat atopic dermatitis (AD) patients who have proven to be refractory to previous treatments. The aim of this study was to assess evolution and patient reported outcome measures in adult patients with moderate-to-severe AD treated with dupilumab in routine clinical practice. The outcomes were evaluated and registered at baseline and weeks 16, 40 and 52. The variables evaluated were: disease severity, pruritus, stressful life events, difficulty to sleep, anxiety and depression, quality of life, satisfaction, adherence to the treatment, efficacy and safety. Eleven patients were recruited between 14 Nov 2017 and 16 Jan 2018. Demographic variables: 90% Caucasian, 82% women. Clinical variables: Mean duration of AD = 17.7 (±12.8), 91% had severe disease severity. At baseline, SCORAD median (range) score = 69.2 (34.8–89.2); itch was reported by 100% of patients; itch visual analogue scale median (range) was 9 (6–10); HADS median (range) total score = 13 (5–21); DLQI mean score = 16 (2–27); EQ-5D-3L median (range) = 57 (30–99). At week-52 there was a significant reduction of SCORAD scores median (range) = 4.3 (0–17.1), HADS total score median (range) = 2 (0–10) and improved quality of life EQ-5D-3L median (range) = 89 (92–60). This study confirms that dupilumab, used for 52-weeks under routine clinical practice, maintains the improved atopic dermatitis signs and symptoms obtained at week 16, with a good safety profile.

scholarly journals Patients with Hidradenitis Suppurativa Suffer from Low Health-Related Quality of Life as Measured by the Generic 15D Instrument

2021 ◽  
pp. 1-7
Author(s):  
Mirkka J. Hirvonen ◽  
Rafael Pasternack ◽  
Tiina Lipitsä ◽  
Armi Vihervaara ◽  
Rauno Harvima ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Hidradenitis Suppurativa ◽  
Clinical Severity ◽  
Dimensional Measure ◽  
Measurement Tools ◽  
Health Related Qol ◽  
Related Quality ◽  
Health Related

<b><i>Introduction:</i></b> Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease associated with various comorbidities and diminished quality of life (QoL). Among dermatological conditions, HS is reported to most severely diminish QoL. This study aimed to analyse the health-related QoL (HRQoL) of patients with HS in more detail by using generic to disease-specific HRQoL questionnaires. Correlations between the HRQoL measures and HS disease severity measures were assessed. <b><i>Methods:</i></b> We analysed the HRQoL and clinical severity of patients with HS (<i>N</i> = 92) treated in 5 Finnish hospitals using HRQoL measurement tools most often used in dermatological clinics, as well as the generic 15D instrument (standardized and self-administered 15-dimensional measure of HRQoL). The disease severity was assessed using the Hurley stage, International Hidradenitis Suppurativa Severity Score System, and disease severity evaluation by the investigator. <b><i>Results:</i></b> The mean 15D score of HS patients was low and comparable with that of patients with cancers. No correlation was found between HS severity measures and 15D score, indicating that even mild HS has a high impact on HRQoL. <b><i>Conclusions:</i></b> Our findings strengthen the understanding about HS as a debilitating disease and even compared with non-dermatological conditions and highlight the need of comprehensive care of patients with HS.

Sign in / Sign up

Export Citation Format

Share Document