Real-World Study on the Burden of Hidradenitis Suppurativa

N/ANot Yet RecruitingNCT07323303

PeriPharm100 enrolled

Overview

Despite the significant impact of HS on patients' quality of life (QoL) and daily functioning, there remains limited real-world evidence describing the burden of this condition in Canada. HS is an under-recognized and often misdiagnosed condition, with a substantial psychological and physical burden on patients. Understanding the real-world experiences of individuals living with HS in Canada can help identify unmet needs and inform patient-centered care approaches.

Study Type

OBSERVATIONAL

Enrollment

100

Conditions

Hidradenitis Suppurativa (HS)

Interventions

No Intervention: Observational CohortOTHER

No specific intervention is assess in this study. Observational cohort.

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

Inclusion Criteria: 1. Patient diagnosed with HS; 2. Aged ≥18 years; 3. Able to read and understand French or English; 4. Willing and able to provide written informed consent. Exclusion Criteria: 1\. Participation in an interventional study for HS.

Outcomes

Primary Outcomes

To estimate work productivity loss in patients with HS.

Using the Work Productivity and Activity Impairment (WPAI) questionnaire. This questionnaire provides a quantitative measure of impairment over the last 7 days and includes four metrics: absenteeism (work time missed because of health issues during the past 7 days), presenteeism (impairment while working due to health issues during the past 7 days), overall work productivity loss (combination of absenteeism and presenteeism), and activity impairment.

Time frame: At recruitment

Secondary Outcomes

To estimate the QoL of patients with HS

The Hidradenitis Suppurativa Quality of Life Questionnaire (HiSQOL) is a validated, HS-specific instrument designed to capture the multidimensional impact of HS on quality of life over the previous 7 days. It consists of 17 items that use Likert-type response options, ranging from 0 ("not at all") to 4 ("extremely"), with some items allowing respondents to indicate that an activity was not performed due either to lack of relevance or HS severity

Time frame: At recruitment

To estimate pain intensity in patients with HS.

Patients with HS will self-report the worst intensity of their pain over the past 7 days using an 11-point numeric rating scale (NRS). The NRS ranges from 0 ("No Pain") to 10 ("The worst imaginable Pain"). Pain was selected as a key symptom given its substantial impact on patients' daily lives and QoL. The 7-day recall period was chosen to balance recall accuracy and symptom variability, capturing recent disease activity while minimizing recall bias.

Time frame: At recruitment

Central Contacts

Jean Lachaine, PhD

CONTACT

514-731-8207 jean.lachaine@peripharm.com

Data from ClinicalTrials.gov

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