Qualitative investigation of disease course, characteristics and lived experience of generalized pustular psoriasis.

Background: Generalized pustular psoriasis (GPP) is a relapsing-remitting chronic disease characterized by painful pustules with systemic symptoms that has a negative impact on quality of life. The psychosocial and economic burden of this rare condition is not well characterized.

Objectives: To qualitatively characterize the cumulative burden of GPP on patients' quality of life and psychosocial wellbeing.

Methods: A retrospective chart review of patients with GPP was performed to collect demographic information, followed by prospective semistructured clinical interviews. Interview transcripts were analysed using thematic analysis.

Results: Three major themes were revealed: (i) burden of having a chronic disease with an unpredictable course, (ii) an inability to fulfil societal roles results in a loss of identity, and (iii) a physician-patient relationship grounded in trust and transparency can be invaluable in helping patients endure chronic disease.

Conclusions: GPP has a negative impact on patients' quality of life and psychosocial wellbeing. Impairments in daily function and mental health primarily affect patients during flares and influence behaviour during periods of quiescence. A strong patient-physician relationship may help mitigate the impact of GPP.