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Patients with PsA, psoriasis face psychosocial disruption, harbor unmet treatment expectations
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Psoriatic arthritis and psoriasis severely disrupt patients’ ability to function day-to-day as well as their psychosocial well-being, with many patients carrying unmet expectations regarding treatment efficacy, according to recent findings in Arthritis Care & Research.
“While tighter disease control has been shown to improve disease activity, there remains a mismatch between patient and physician perception of the severity of their condition potentially leading to differences in the perception of need for treatment escalation,” Daniel Sumpton, MBBS, FARCP, of the University of Sydney, and colleagues wrote. “International guidelines emphasize the need for a shared decision-making approach between clinicians and patients, which requires an understanding of the goals and values of patients.”
To evaluate the perspectives and experiences of patients with PsA and psoriasis, Sumpton and colleagues conducted a systematic literature review of qualitative studies featuring perspectives from adults diagnosed with either disease. They searched MEDLINE, Embase, PsycINFO, CINAHL from database inception to April 29, 2018, as well as reference lists of relevant studies and Google Scholar. Excluded articles included epidemiological studies, case reports, basic science, letters, editorials, reviews and non-English publications.
The researchers identified 56 studies, representing 1,147 patients with psoriasis and 337 with PsA, to include in their final analysis. The studies originated from 19 countries, with the majority from continental Europe, the United Kingdom, the United States and Australia. In addition, although most of the studies assessed patient views through interviews, 21% gathered information via focus group. After reviewing the studies, the researchers discussed concepts, themes and subthemes.
According to the researchers, there were six general themes that emerged from the relevant studies. These themes, which describe how patients characterized their experiences and feelings regarding their disease, included “suffering uncontrollable and ongoing upheaval,” “weighed down by mental load,” “harboring shame and judgement,” “demoralized by inadequacies and burden of therapy,” “gaining control” and “making confident treatment choices.”
Within each of these themes are several subthemes. Regarding “suffering uncontrollable and ongoing upheaval,” patients reported feeling their disease was dictating their life choices and course, disrupting family and social roles. They also felt limited by “debilitating symptoms” and “unstoppable, far-reaching fatigue,” the researchers wrote. In “weighed down by mental load,” subthemes included anxiety and dread spurred by symptom volatility and deterioration. Patients also described struggling with unrecognized distress and feelings of helplessness and nihilism.
In “harboring shame and judgement,” patients described being labeled as unhygienic and contagious. In addition, they reported feelings of rejection and isolation, as well as hiding away and resenting their own appearance. They also expressed pain and embarrassment in intimacy. By “demoralized by inadequacies and burden of therapy,” patients meant they had been disappointed by unmet expectations regarding treatment, as well as the daily drudgery of unpalatable or inconvenient treatments. Patients also reported being disempowered by a lack of personalized care.
However, under “gaining control,” some patients described how they made sense of their disease, accepted their new status quo and ultimately regained independence and normality. In addition, under the “making confident treatment choices” theme, subthemes included trading off perceptible benefits against safety and convenience, relying on advice from family members, and seeking out empowering, reassuring relationships.
“People with psoriatic arthritis and psoriasis contend with psychosocial challenges due to a sense of life disruption, fear of deterioration and the perception of their mental health burden and unmet treatment needs,” Sumpton and colleagues wrote. “Validation of this burden, aspiring to a holistic management approach, addressing low treatment expectations and fear of medications may build trusting therapeutic relationships, improve overall quality of life and engagement with medical therapy.” – by Jason Laday
Disclosure: The researchers report no relevant financial disclosures.
Perspective
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Carrie Beach, BSN, RN-BC
The outcomes of the review completed by Sumpton et al serve as an important reminder to health care providers to treat the “whole” patient and not just his/her disease. While the physical exam is certainly a priority, especially when it comes to both psoriasis and psoriatic arthritis, it is equally important to go beyond the physical assessment and gauge the patient’s perception of his/her own disease as well as treatment expectations.
As health care providers, a key role is to provide our patients with quality education about their disease states and treatments; this goes beyond handing them a pamphlet or handout as they are leaving the office. We need to have open discussions and set realistic goals for each patient individually. We all know how frustrating it can be for patients (and those of us trying to educate them) to see medication advertisements presenting a “patient” that has clear skin, increased energy, living a seemingly pain-free lifestyle. Our patients then turn to us when they do not see these same results. Addressing these concerns with honesty and compassion, assessing each individual’s psychosocial needs and building trusting patient/provider relationships, will hopefully lead to improved adherence and outcomes for these patients.
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