The survey was completed between August 4 and 14, 2020 by 66 people living with GPP.
Who were the Survey Participants?
Most of the survey participants were women (80%), aged 40–59 years (62%), and had been diagnosed with GPP at least 1 year previously (96%; Table 1). Prior to the COVID-19 pandemic, approximately half of survey participants were working (48%) and approximately one-quarter identified as disabled (27%; Table 1).
Table 1 Demographics and baseline characteristics of survey participants How did the Survey Participants Describe Their Journey to a GPP Diagnosis?
Many survey participants reported that they had experienced a delay before being diagnosed with GPP. For example, 36% reported living with symptoms for months and 38% reported living with symptoms for years before receiving a GPP diagnosis. The common reasons cited by respondents for the delay were misdiagnosis (59%) and having to visit multiple healthcare professionals and/or specialists before a diagnosis was made (51%). Affordability of healthcare or lack of medical insurance (37%) and lack of access to specialists (18%) were also cited as reasons for the delay in receiving a GPP diagnosis. Survey participants reported receiving a GPP diagnosis from a dermatologist (68%), rheumatologist (18%), or primary care physician (14%).
How did the Survey Participants Describe Worsening GPP (Flares)?
All respondents reported experiencing at least one episode of worsening GPP (flares) in the past 12 months, and most (86%) had experienced at least two flares in the past 12 months. The top three factors to which survey participants attributed flares were emotional distress (83%), seasonal changes (47%), and medication changes (46%). Infections (24%) and stopping (21%), starting (11%), or changing the dose of a medication (14%) were less commonly cited as a trigger for flares (Fig. 1).
Respondents defined flares by the presence of itching (76%), an increase in the size of the affected area (74%), more crusts (67%) or pustules (62%), and/or fatigue (42%; Fig. 1). When asked to reflect on the symptoms experienced during a flare, changes in mood (1), pain (2), and fever (3) were ranked the highest. The most prominent among these was changes in mood, the burden of which was described as high (8–10 on a scale of 0–10) by 57% of respondents and medium (5–7) by 43% of respondents. The burden imposed by pain was described as high by 74% of respondents and medium by 26% of respondents.
In total, 59% of participants reported that pain was associated with flares. A general increase in pain was reported by 45% of respondents, increased pain in the hands, arms, feet, or toes was reported by 47% of respondents, and a burning sensation was reported by 42% of respondents. Consistent with the finding that emotional distress was the most cited cause of flares, the majority of survey participants reported feelings of fear and anxiety about GPP (67%), with 71% reporting a fear of flares, 65% worrying that their current medication would stop working, 59% reporting that GPP was accompanied by feelings of hopelessness and depression, and 56% worrying that their condition would become more severe with age.
How did the Survey Participants Describe the Severity of Their GPP?
The survey participants were asked to reflect on the severity of their symptoms when GPP was under control and during flares. When their condition was under control, approximately half of the respondents (52%) reported that they had few or no symptoms and 42% reported that they were able to engage in activities that they enjoy. In addition, a substantial proportion of participants reported having symptoms that did not cause pain or discomfort (39%) or that were accompanied by minimal pain (38%) when their GPP was under control.
Most survey participants (70%) reported that their symptoms were of low severity when GPP was under control, defined as 0–4 on a scale of 0 (no impact) to 10 (highest possible impact). Of note, 24% of respondents reported their symptoms were of moderate severity (5–7) and 6% reported high severity (8–10) when GPP was under control. In contrast, during flares, most survey participants (76%) described the severity of their symptoms as high and 6% described the severity as low.
How did the Survey Participants Describe the Effect of GPP on Activities of Daily Living?
Many survey participants reported that GPP interfered with activities of daily living during flares as well as when they were not experiencing symptoms (Fig. 1). During flares, approximately half of respondents reported that GPP had a high impact (defined as 8–10 on a scale of 0–10) on their ability to exercise (58%), to be intimate with a spouse or partner (52%), to wear shoes (47%), to complete errands (44%), or to socialize with family, friends, or neighbors (41%). When not experiencing symptoms, up to one-quarter of respondents reported that GPP had a high impact on their ability to be intimate with a spouse or partner (23%), to exercise (21%), to attend important life events (15%), or to wear shoes (15%).
What Treatments had the Survey Participants Received for GPP?
The survey participants were asked to describe their treatment history for GPP, the effectiveness of their current regimen, and how their regimen may have been modified during a flare. Most respondents (56%) reported that they were currently receiving topical corticosteroids (Fig. 2). In addition, 20% were currently receiving methotrexate, 18% were receiving an interleukin (IL)-17 inhibitor, 12% were receiving a tumor necrosis factor (TNF) inhibitor, 11% were receiving an IL-12/23 inhibitor, and 5% were receiving an IL-23 inhibitor.
Only approximately one-third of survey participants (32%) felt their condition was well controlled by their current treatment (defined as 8–10 on a scale of 0–10). Less than half of survey participants (45%) felt that their condition was moderately-well controlled (5–7) and 23% felt their condition was poorly controlled (0–4) by their current treatment.
When reflecting on treatment during flares, most survey participants (80%) reported that their physician instructed them not to switch medications and approximately one-third (32%) reported receiving additional medications, the most common of which were oral corticosteroids and other topical treatments (38% for each; Fig. 2).
How did the Survey Participants Perceive Their Relationship with Their Physician?
When asked to reflect on their relationship with their healthcare provider, most participants reported being comfortable asking questions about GPP (86%) and felt that they understood their diagnosis (89%). Similarly, most respondents felt that their physician provided them with up-to-date information about GPP (77%) and knew how best to treat their disease (68%). In contrast, approximately half of the respondents felt that their physician did not understand the level of emotional or psychological pain (47%) and/or the level of physical pain (50%) that GPP was causing them, and 17% felt that their physician did not know how best to treat their disease (15% of participants reported feeling neutral in this regard).