Hidradenitis Suppurativa (HS)
Conditions
Brief summary
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.
Interventions
OTHERNo Intervention: Observational Cohort
No specific intervention is assess in this study. Observational cohort.
Sponsors
PeriPharm
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| To estimate work productivity loss in patients with HS. | At recruitment | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| To estimate the QoL of patients with HS | At recruitment | 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 |
| To estimate pain intensity in patients with HS. | At recruitment | 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. |
Contacts
Primary ContactJean Lachaine, PhD
Outcome results
None listed