Itching for a Cure: The Psychosocial Impact of Prurigo Nodularis

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When the US Food and Drug Administration (FDA) made its decision in 2022 to approve dupilumab (Dupixent) for patients with prurigo nodularis, patients in the US with the rare skin disease collectively heaved a sigh of relief.¹

In the same year, the European Medicines Agency also approved dupilumab for the condition. In much of the world, this disease had gone without an approved treatment option until 2022.²

Prurigo nodularis is a rare, chronic skin disorder which is known to impact middle-aged adults, primarily. While it may not appear to be as serious as other rare diseases, the condition presents a significant challenge for patients suffering with the disease’s characteristic itch and skin nodules.

In light of Rare Disease Day, held every year on the last day of February with the goal of raising awareness for rare diseases and improving treatment access for patients and their families, it behooves dermatologists and clinicians in general to fully appreciate the various burdens of this condition which has been misunderstood and misdiagnosed for so long.³

An exploration of prurigo nodularis, with special emphasis on its psychosocial impact on patients, may be the best way to highlight the disease in a manner that emphasizes the value of finding new ways to manage and treat the condition. Here, interviews with 2 leading dermatologists with expertise in prurigo nodularis contribute to an overall understanding of the burdens faced by patients.

Overview of Disease Burden

Prurigo nodularis poses a formidable obstacle for those contending with its symptoms and its influence on psychological and social well being. The condition is characterized by severe pruritus and the emergence of scaly nodules or lumps which are itchy, raised, and often painful.

The characteristic nodules of prurigo nodularis are typically located in the visible areas of the body arms, legs, and trunk, though they can be almost any place on the body. Intense itching is a defining feature of the disease, and this often leads to scratching, subsequent bleeding, and then a thickening of the nodules.⁴

Patients with HIV or hepatitis C infections, lymphoma, or diabetes, thyroid, kidney, or liver issues more commonly have prurigo nodularis than those without such conditions.^4,5 Clinicians will frequently screen individuals with prurigo nodularis for these issues at the same time.

Though the disease is considered rare, according to the National Organization for Rare Diseases database, there are around 87,000 adults impacted by the disease annually.¹

Despite prurigo nodularis’s current level of awareness among dermatologists, it remains widely misunderstood and lacks many viable treatment alternatives. Additionally, the disease’s cause remains unknown, leaving many patients scratching their heads in confusion as to why they could have contracted the condition.

Root Causes of Prurigo Nodularis’s Psychosocial Impact

Prurigo nodularis is especially distressing due to the persistent itch resulting from the raised nodules on the bodies of patients. The more patients continue to scratch, the more they tend to bleed and the thicker their nodules become.

The incessant itch felt by prurigo patients is coupled with tremendous sleep disturbance.⁶ A lack of healthy sleep may be detrimental to patients struggling with prurigo nodularis or the other conditions often associated with the disease, to say nothing of the mental health outcomes resulting from sleep deprivation.

The combination of physical pain and emotional distress among patients with prurigo nodularis is compounded by the disease’s visual appearance to others. Many patients may face distress simply by others viewing their skin nodules and believing them to be infected by a contagious disease, even though it is neither contagious nor hereditary.⁵

Each of these elements contribute to feelings among patients of depression, anxiety, and isolation.

Highlighting the complex relationship between prurigo nodularis symptoms and its psychosocial impact on patients’ everyday lives is vital for meeting demands for patient-focused care and effective treatment. It is only by connecting the condition to its everyday impact on human beings that it can be appreciated.

Raj Chovatiya, MD, PhD, on Exploring Options with Patients

In a recent interview, Raj Chovatiya, MD, PhD, assistant professor of dermatology at Northwestern University’s Feinberg School of Medicine and member of the HCPLive ad board, spoke about the disease and its impact on patients from his own perspective.

Raj Chovatiya, MD, PhD

Credit: X (Twitter)

“Mental health symptoms are quite common amongst patients with prurigo nodularis, and depression would be the one that probably has the highest prevalence as not only a symptom, but a true comorbidity in terms of a mental health disorder,” Chovatiya explained.

Chovatiya further noted that this has been echoed by a number of different studies into the impact of the condition, with anxiety and even suicidal ideation or behavior observed in certain studies. He highlighted the benefit of spending time talking to patients with prurigo nodularis, as mental health concerns can be quite prevalent amongst patients.

“I think that many of them talk about the fact that they can't go about their normal day-to-day life in the same fashion that they used to,” Chovatiya explained. “Because they're so itchy and they're oftentimes concerned about scratching, in addition to the high visibility of their lesions as well. Simply just trying to get through a meeting or being at work or wearing short sleeves are all huge challenges that you otherwise wouldn't think about, because they're just the kind of stuff we take for granted.”

Dermatologists may not address the psychological aspects of the condition directly, but they may choose to help patients connect with mental health professionals. Chovatiya was asked about which elements of these impacts are fair to ask physicians to address.

“You know, we face a lot of diseases in dermatology that are not necessarily life and death, but rather incredibly burdensome on people's day-to-day long term life,” he said. “And to me, I think that shows the kind of power that we have in dermatology to help patients. While you know I'm not advocating for us to become mental health practitioners, because there are individuals that specialize in that, it can really be as simple as just asking some directed questions are doing a little bit of screening amongst your patients and understanding who might need an additional lift or support and offering resources that might exist in that regard.”

Clinicians, Chovatiya concluded, may attempt to ensure patients are receiving the best dermatologic care, whether through a multidisciplinary approach or whatever else is warranted. Bringing options patients have to light may make a big difference for those with the disease.

Shawn Kwatra, MD, on Patient Perspectives and Misdiagnoses

During his interview with the HCPLive editorial team, Shawn Kwatra, MD, spoke on the same topic. Kwatra is known for his expertise with prurigo nodularis, given his work as the director of the Johns Hopkins Itch Center and as associate professor of dermatology for Johns Hopkins University’s School of Medicine.

Shawn Kwatra, MD

Credit: Johns Hopkins Medicine

“So in our recent study actually published in the British Journal of Dermatology, as well, we found that prurigo nodularis patients have a very high overall impact on their quality of life, as measured by the Dermatology Quality of Life Index, the DLQI,” Kwatra said. “Even around close to 16, which is a very high, severe impact. These patients also have very significant levels of depression and anxiety, so mental health is definitely an issue in these patients.”⁷

A disturbing element noted by Kwatra was that many patients with prurigo nodularis had been told that the condition was, essentially, only imagined by them. Kwatra noted that this could be considered medical gaslighting.

“I am thinking about a patient recently who had gone over 10 years having someone tell them that was in her head, and feeling that guilt that comes along with that,” Kwatra recounted. “And it was so validating to have a diagnosis and say ‘we're learning more about the pathophysiology of this condition and it's out of your control.’”

He also highlighted some of the research that he and his team had published in the Journal of the American Academy of Dermatology recently.

“We showed that the impact of prurigo nodularis is similar to chronic heart failure, stroke, haemodialysis, some of these very significant medical conditions,” Kwatra said. “So we want this condition to get the respect it deserves. These patients need treatment quickly and they need to be relieved of their edge as fast as possible. They need to have their mental health be addressed. They need to not be labeled as having this be in their head.”

Addressing the Disease Alongside Patients’ Mental Health Needs

It is widely-known among dermatologists that the unrelenting scratching and rubbing done by patients with prurigo nodularis does not allow the nodules to heal and leads to scarring. The breaking of this itch-scratch cycle is a central goal of treatment.

Both Kwatra and Chovatiya alluded to the fact that treatment is the first priority of dermatologists, highlighting some of the research on the horizon.

“Reducing itch is paramount,” Kwatra explained. “We currently have an FDA-approved agent, dupilumab. We also have other options such as phototherapy and methotrexate are all off-label options…And we also have on the horizon another biologic nemolizumab, which is an IL-31 inhibitor, that recently we had news that it has has an accepted biologics license.”

Oral JAK inhibitors were also highlighted, such as abrocitinib and topical ruxolitinib. There is also a global, phase 2 trial taking place on povorcitinib. While there is only 1 FDA-approved medication for the condition, it may be the best time in history to have prurigo nodularis, in terms of treatment options.

“I think the biggest thing is, number 1, making the diagnosis,” Chovatiya concluded. “Then, once you've made the diagnosis, get approved, targeted treatment on board…The data that we have seen for dupilumab and for nemolizumab all suggest that with improvement of itch comes improvement of lesional signs, improvement of comorbidities, sleep, and presumably that would all track with quality of life and mental health.”

Looking Toward the Future

The 2022 approval of dupilumab undoubtedly marked a significant milestone for patients battling this rare skin disorder. In addition to the disease’s observed effects, the psychosocial impact, including emotional struggles, sleep disturbance, and societal stigma due to visible symptoms, are well-established.

A thorough understanding of the multifaceted burdens of prurigo nodularis require a comprehensive approach by clinicians in which both the physical symptoms and the associated mental health challenges are addressed.

Interviews with leading dermatologists such as Kwatra and Chovatiya help to underscore the prevalence of mental health issues among patients. By acknowledging and validating patients' lived experiences, physicians may be able to help alleviate the psychological toll of this rare but significant skin disease, offering a lifeline to individuals who have long felt misunderstood.

As advances in treatment appear on the horizon, and as awareness of the psychosocial effects of prurigo nodularis become more widely-addressed, hope looms on the horizon for those struggling with this condition.

References

1. ^{FDA approves first treatment for prurigo nodularis. US Food and Drug Administration. Updated as of September 9, 2022. https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-first-treatment-prurigo-nodularis. Date accessed: February 29, 2024.}
2. ^{Smith T. Biologics License Application for Nemolizumab Accepted by FDA for Prurigo Nodularis, Atopic Dermatitis. HCPLive. February 14, 2024. https://www.hcplive.com/view/biologics-license-application-for-nemolizumab-accepted-by-fda-for-prurigo-nodularis-atopic-dermatitis. Date accessed: February 29, 2024.}
3. ^{What is Rare Disease Day? https://www.rarediseaseday.org/what-is-rare-disease-day/. Date accessed: February 29, 2024.}
4. ^{Kwatra SG. Prurigo Nodularis. JAMA Dermatol. 2022;158(3):336. doi:10.1001/jamadermatol.2021.5307.}
5. ^{Prurigo Nodularis. Yale Medicine. https://www.yalemedicine.org/conditions/prurigo-nodularis-overview#:~:text=The%20unrelenting%20scratching%20and%20rubbing,is%20not%20hereditary%20or%20contagious. Date accessed: February 29, 2024.}
6. ^{Rodriguez D, Kwatra SG, Dias-Barbosa C, et al. Patient Perspectives on Living With Severe Prurigo Nodularis. JAMA Dermatol. 2023;159(11):1205–1212. doi:10.1001/jamadermatol.2023.3251.}
7. ^{Cornman HL, Whang KA, Ma E, et al. Severity, impact on quality of life and mental health burden of pruritus in prurigo nodularis: a cross-sectional study of a diverse patient cohort. Br J Dermatol. Published online January 23, 2024. doi:10.1093/bjd/ljad500.}