Optimizing Care for Patients with Pustular Psoriasis – Research Report and Summary from National Roundtable

August 2022

Pustular forms of psoriasis are chronic conditions set apart from other forms of psoriasis by the appearance of small (2-3 mm) bumps filled with pus (called pustules). As a chronic condition, it is associated with outbreaks (flareups) which can cause significant suffering and loss of function (e.g., walking, holding objects). It is a rare form of psoriasis, affecting ~1% of all patients with psoriasis. There are different ways to classify the disease, and the type of pustular psoriasis identified depends on where pustules form. As a rare condition, diagnosis relies heavily on the involvement of well-trained specialists who can set it apart from other skin conditions involving pustules. Localized forms are limited to small areas, often palms and soles. A  generalized form occurs over a much larger area of the body and may cause more illness-- patients with generalized pustular psoriasis can have life-threatening complications.  

To identify what key changes to improve and optimize care are needed the most, the Institute of Health Economics (IHE) conducted several multistakeholder (policy researchers, clinicians, clinical researchers, patients) evidence-informed discussions, including a survey of a larger group of patient representatives and clinicians. Options were presented and discussed at an Institute of Health Economics, Virtual Multi-Stakeholder Policy Roundtable held in Spring 2022. Key actions to optimize the future care of patients were identified through the multistakeholder discussion. These include: 1) Education and awareness for community-based dermatologists, and other frontline care provider; 2) the need to co-create Canadian clinical consensus guidance with patients and with a focus on the patient experience; and 3) the need to develop and finance networks to support excellent care – providing a platform for research, education and referral.

This research and engagement initiative was organized by the Institute of Health Economics (IHE) and was supported by and developed in partnership with Boehringer Ingelheim (Canada) Ltd./Ltée.

Link to full report: (pdf)

For further information

John Sproule, Senior Policy Director, Institute of Health Economics,

Ph: 780-862-1905

Email: [email protected]