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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patient with HS | Patient diagnosed with HS |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| No Intervention: Observational Cohort | Other | No specific intervention is assess in this study. Observational cohort. |
|
| Measure | Description | Time Frame |
|---|---|---|
| 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. | At recruitment |
| Measure | Description | Time Frame |
|---|---|---|
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
1. Participation in an interventional study for HS.
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Adult patients with HS
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Jean Lachaine, PhD | Contact | 514-731-8207 | jean.lachaine@peripharm.com |
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| ID | Term |
|---|---|
| D017497 | Hidradenitis Suppurativa |
| ID | Term |
|---|---|
| D017192 | Skin Diseases, Bacterial |
| D001424 | Bacterial Infections |
| D001423 | Bacterial Infections and Mycoses |
| D007239 | Infections |
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| 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. | At recruitment |
| D012874 | Skin Diseases, Infectious |
| D013492 | Suppuration |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D016575 | Hidradenitis |
| D013543 | Sweat Gland Diseases |