Disconnect amid dual diagnosis: Managing the mental toll of psoriasis, PsA
The gap between patient-reported outcomes and clinician-assessed endpoints in rheumatology is well documented. Patients generally care about pain, fatigue and the emotional toll immune-mediated diseases can take, while physicians are more likely to pay attention to interleukin activity or C-reactive protein levels.
This disconnect can be seen most clearly in patients with both psoriasis and psoriatic arthritis. When a patient has both diagnoses, that disconnect can lead to quality of life comorbidities for patients and create uphill battles for clinicians.
“Doctors should acknowledge that anxiety and depression are real comorbidities of psoriatic disease,” Jaime Lyn Moy, a patient advocate with both psoriasis and PsA, told Healio Rheumatology in an interview.
A recent study by Sumpton and colleagues, published in Arthritis Care & Research, underscored Moy’s point. They analyzed 56 previously published data sets involving 1,147 patients with psoriasis and 337 with PsA.
The results showed significant life disruption for these patients. They reported “uncontrollable and ongoing upheaval” that dictated life course while causing disruption of family and social roles. Debilitating symptoms limited their life choices, while fatigue was described as “unstoppable and farreaching.”
“We know that the burden of disease in psoriasis is quite high and is further compounded by the development of psoriatic arthritis,” Joseph F. Merola, MD, director of the Center for Skin and Related Musculoskeletal Diseases (SARM) at Harvard Medical School, said in an interview. “Anxiety and depression are now well-documented and highly prevalent comorbidities of psoriatic disease.”
Data from the National Psoriasis Foundation suggested that as many as 30% of people with psoriasis also develop PsA — in the U.S., as many as 2,400,000 individuals live with two psoriatic diseases. If findings from Sumpton and colleagues are at all representative of the psoriasis/PsA patient experience, this constitutes a significant mental and physical health burden.
“Physicians are becoming more aware of the mental health issues arising in patients with psoriasis and psoriatic arthritis,” Dafna D. Gladman, MD, director of the psoriatic arthritis program at Toronto Western Hospital and a member of the National Psoriasis Foundation Medical Board, told Healio Rheumatology.
Despite this increased awareness, Gladman suggested that she is “not sure” if all patients are being adequately treated for these comorbidities. “Fortunately, some of the new medications which lead to almost remission states help these emotional issues as well,” she said.
But this is not guaranteed by any means. There is a growing number of treatments for the psoriatic diseases, but they are not fully effective in every patient. Additionally, logistical and administrative hurdles often exist for patients who need care from both a rheumatologist and a dermatologist. So, patients with dual psoriatic diagnoses continue to carry the stress and stigma of their conditions even when physician-assessed disease parameters are largely under control.
It is with this in mind that Healio Rheumatology examines the psoriasis/PsA patient to gain insight on managing both the body and the mind.
Mental Health Toll
The findings from Sumpton and colleagues painted a grim portrait of the psoriasis/PsA experience. Symptoms were volatile. Patients dreaded deterioration of physical and mental functioning, struggled with unrecognized distress and felt “helpless and nihilistic.”
Shame was a common denominator, with patients feeling unhygienic and contagious and, consequently, isolated or even rejected by their social groups. This caused patients to hide, to resent their own physical appearance and to be embarrassed in moments of intimacy.
Gaining control was important to patients with psoriatic disease, according to the findings. The first priority was to simply make sense of the diagnosis/diagnoses and accept their new reality. Regaining independence, if not normalcy, came next. Patients reported having to re-establish a relationship with their own bodies, Sumpton and colleagues wrote.
Gladman offered an explanation for such a significant disease burden. “We have demonstrated that patients with psoriatic arthritis have more issues than those with psoriasis alone, because of the coexistence of joint pain together with the skin issues such as itch, pain and shedding of the scale,” she said. “There is a higher burden of disease which affects quality of life and function.”
It follows, then, that patients with both conditions would be increasingly more likely to have some, if not all, of these complications. But Moy suggested that the complications are not insurmountable, and that small steps can go a long way.
“Having a questionnaire or survey at each visit that monitors mental health is very important,” she said. “This will help doctors better understand their patients’ total body health and be better ready to address any problems or red flags.”
Treating to Multiple Targets
If there is good news for the psoriasis/PsA patient, it is that as understanding of psoriatic diseases has increased, treatment options have both increased and improved. Merola suggested that this started with the fundamentals. “We know that patients with PsA remain underdiagnosed, so one basic challenge is getting our psoriasis patients to a timely diagnosis and therefore to appropriate therapy,” he said.
Regarding the therapeutic armamentarium, a growing body of data shows that anti-TNF agents, anti-IL-17 agents and anti-IL-23 agents work well for both skin and joint manifestations, according to Gladman. She added that JAK inhibitors work better for joints than skin, while IL-12/23 therapies work better for skin than for joints.
“Not all medications work equally for both skin and joint manifestations,” Gladman acknowledged. “Moreover, every patient has their own perception of what is most relevant to them and that too needs to be taken into account.”
Treatment considerations may be altered by the presence of other comorbid immune-mediated inflammatory disorders, such as concurrent inflammatory bowel disease, according to Merola. “In these cases, for instance, choosing an agent, or combination of agents, that is most compatible with the underlying diseases would be indicated,” he said. “Also, there remains an arguably larger challenge in obtaining robust and sustained improvements in patients’ musculoskeletal disease than in achieving skin clearance for a majority of patients with newer treatments.”
Further data from the Sumpton study highlight this notion that there is room for improvement in psoriatic disease treatments. Findings showed that patients often felt disappointed at the benefits provided by their treatment. The daily grind of taking medication often exacted a toll, as did the breadth of “unpalatable” treatment options and the lack of personalized care.
“I do have a fear that my medication will stop working, and I will have to try another biologic,” Moy said. “I have already been on six. Five years is the longest any of them has worked.”
Gladman understands that Moy’s story is the story of many patients cycling through therapies. “Every patient is different,” she said. “A drug that should work for both skin and joints sometimes works on only one of the manifestations in an individual patient and not the other. Therefore, it is important to treat each patient based on their own manifestations and their own response.”
In keeping with the theme of the disconnect between physician and patient, Moy described a completely different set of challenges pertaining to treatment. “The pharmacy will not fill my prescription until I have a prior authorization, but the doctor’s office insists that they already submitted it, while the insurance company says they approved it and the pharmacy is holding it up,” she said. “Everyone points fingers at someone else, and no one wants to help. All of this back tracking and following up leaves me frustrated and stressed out, which in turn, can cause a flare in my diseases.”
While clinicians attempt to battle lesions and musculoskeletal complaints, they also should be aware of these administrative complications that can make the life of an individual with psoriasis and PsA so difficult. “Having psoriatic disease is hard enough,” Moy said. “Patients should not have to worry about getting their medications, too.”
One remedy to these logistical concerns is to have more than one clinician — and, consequently, more than one administrative team — managing these patients. Moy expounded on the difficulties in accessing her medications. “Without one point person to navigate the process, I have to be the one to find the hiccups in the system and fix them myself,” she said.
Both Gladman and Merola spoke to the clinical side of addressing patients with both psoriasis and PsA. “Depending on where people practice, there may be more or less coordination [among specialties] in the management of patients with psoriasis and psoriatic arthritis,” Gladman said.
She noted that her institution fosters joining forces with dermatology. “We have at least one combined clinic a month, which allows us to assess patients together and make therapeutic approaches together,” she said. “There are several centers around the world that have such combined clinics. Otherwise, if the patient’s main issue is joint disease, the rheumatologist will take the lead, while if the major issue is the skin, the dermatologist will take the lead.”
Merola suggested that the rheumatology and dermatology communities have come to appreciate that in order to optimize patient’s health-related quality of life, it is necessary to treat both skin and joints effectively. “This means having an appreciation among rheumatologists that skin disease is important to patients and should be factored into treatment decisions, and among dermatologists, that joint disease is common and screening efforts with appropriate referral and/or choice of therapy is key to improving outcomes,” he said. “Increased collaboration between dermatologists and rheumatologists is of paramount importance to the appropriate care of the psoriatic patient.”
However, Merola also recognized the necessity of a holistic approach. “In addition to skin and joint considerations, the collaborative team may include mental health professionals as well as relevant providers to address the multiple other potential facets of disease such as the metabolic syndrome and cardiovascular disease risk,” he said.
For more information:
- Dafna D. Gladman, MD, can be reached at 399 Bathurst St. 1E-410B, Toronto, Ontario, Canada M5T 2S8; email: firstname.lastname@example.org.
- Joseph F. Merola, MD, can be reached at 221 Longwood Ave., Boston, MA, 02115; email: email@example.com.
- Jaime Lyn Moy lives in the Detroit area, and can be reached through her website at http://jaimelynmoy.wixsite.com/aspotofhope.