Patients with prurigo nodularis discuss the physical, emotional impacts of disease

Key takeaways:

• Other than sleep deprivation, the effects of prurigo nodularis on a patient’s quality of life are infrequently discussed.
• Overall, the worst impact was on patients’ feelings or moods.

In a phone-led qualitative study, 21 patients with prurigo nodularis expressed that their disease negatively impacts many aspects of their physical, psychological and social well-being.

Prurigo nodularis (PN), a debilitating neuroimmune skin disease characterized by chronic itching, is known to severely impact an individual’s quality of life.

“The available literature collectively indicates that the most bothersome symptom in PN is chronic itch, which interferes with sleep and is associated with anxiety and depression,” Danielle Rodriguez, PhD, a research scientist at Evidera, and colleagues wrote.

The researchers explain that while this is true, there are many other symptoms of PN that impact individuals’ quality of life that are not discussed enough or even elucidated in literature. Therefore, the researchers conducted a qualitative study to document the burdens of this illness based on direct patient input.

The researchers called 21 patients (mean age, 53.1 years; 15 women; 18 white) with PN over the phone and discussed how PN impacts their quality of life.

According to the study, every single patient expressed that PN causes itching, pain, bleeding or scabbing and dry skin. Most patients also expressed that their PN is associated with bumps or lumps (95%), crust on the skin (95%), burning (90%), stinging (90%), lesions or sores (86%), discolored skin (86%) and skin that is raw (81%).

Of the 21 participants, 17 reported their worst symptoms, with 15 of these participants reporting itchiness as the worst or one of the worst.

Consistent with previous studies, 100% of patients stated sleep and daily life in general were the No. 1 aspects of their life affected by PN. This was followed by feelings or mood (95%), relationships (95%), social life (81%) and work or school (71%).

Eighty-five percent of patients admitted that their condition is embarrassing and shameful and 57% expressed experiencing depression. Six of the participants said they no longer want to socialize with others because of these feelings and 10 confessed they isolate themselves due to PN.

Not only does PN impact patients’ social life, but also work and school, as the constant itching becomes a distraction according to seven of the participants.

“These findings can be used to guide the selection of end points for assessing patient-relevant outcomes in clinical trials and should help capture treatment benefits that are import to patients with PN,” the authors said. “These findings may also be useful for patient-centric decision-making in clinical practice.”

The authors plan to build on these findings by creating a conceptual disease model that can be used by practitioners.