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.