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

Pustular psoriasis is a rare form of psoriasis and a chronic disease, with patients experiencing diminished quality of life, reduced productivity, stigma, and shortened life expectancy from disease. Optimal management of pustular psoriasis requires access to healthcare providers with highly specialized knowledge. The rarity of the condition means some patients may receive inappropriate diagnosis an treatment. Along with an increased knowledge of the disease and disease management by highly specialized practitioners, is an increasing recognition that others may be less informed, that standards of care are not widely accessible and that current patterns of care delivery and financing may be a disservice to patients and create worse experiences for patients and care providers. The Institute of Health economics has prepared a report based on literature review and multistakeholder discussions. Key actions to optimize the future care of patients were identified through multistakeholder discussion include: education and awareness for community-based dermatologists, and other frontline care providers; the need to co-create Canadian clinical consensus guidance with patients and with a focus on the patient experience; and the need to develop and finance networks to support excellent care – providing a platform for research, education and referral. This work was supported by funding from Boehringer Ingelheim (Canada) Ltd.