Impact of GPP on Quality of Life and Psychological Well-being: Results from a Non-interventional Survey/Interview-based Study

Abstract

Generalized pustular psoriasis (GPP) is a rare, chronic, systemic inflammatory disease with a heterogeneous clinical course. GPP imposes a substantial emotional burden on patients, including feelings of fear and anxiety.¹

A post hoc analysis of a cross-sectional study was conducted via a web-based survey and qualitative telephone interviews with adults with GPP from China, Japan, the UK and USA. Those who completed the survey could choose to participate in the interview.

Twenty-one participants with GPP (mean age: 41 years; female: 57.1%) completed the survey; 9/21 participants (female: 55.6%) completed the interview. In total, 5/8 (62.5%) interview participants who were asked about GPP diagnosis expressed concerns, including lack of cure and risk of disease recurrence (n=1 for each). Other concerns at diagnosis included the long time to diagnosis (n=3), financial burden, and potential impact on their future children (n=1 for each). All participants reported an impact on their emotional well-being, either in general (n=8/9) or specifically due to flares (n=5/9). Two participants expressed fear and distress when they noticed signs of an impending flare,fear of others noticing their symptoms. Overall, 7/9 (77.8%) reported an impact on their social life, either in general (5/9) or due to flares specifically (5/9). This manifested most commonly (reported by 60–80% of participants) in the form of limited social activities/isolation due to their own or others’ negative feelings towards their skin’s appearance. All interview participants were receiving treatments, including systemic non-biologics, biologics and/or emollients, and 77.8% (7/9) reported treatment side effects. One third of participants expressed concerns about the potential consequences of treatment, including side effects and the risk of contracting other illnesses due to immunosuppression, indicating the need for educational materials (patients were receiving biologics [n=2] and systemic non-biologic [n=1]). One participant expressed fear that their current treatment was ineffective. When asked about their biggest worry, participants gave a variety of responses (n=5/9; 55.6%), including disease recurrence, distress related to symptoms and appearance of skin, passing GPP to their children, pain, and suboptimal treatment (all n=1).

Participants reported feelings of fear and related negative emotions throughout the disease course of GPP, and specifically due to flares. 

Funding

This study was supported and funded by Boehringer Ingelheim.