Patients with psoriatic arthritis often feel limited in their knowledge on medications and treatments, which investigators said leads to a lack of treatment and increased risk of disability.
Shared decision making is considered the standard for patient-centered care and can align care with improved patient satisfaction and health outcomes. However, research based in Sydney, Australia showed that patients with psoriatic arthritis do not have the agency associated with decision making and are often overwhelmed by the potential harms of systemic medication.
Patients with psoriatic arthritis can experience joint pain and stiffness, as well as enthesitis and inflammatory spinal pain. According to the study, a variety of guidelines for the treatment of psoriatic arthritis recommend a shared decision-making approach.
However, the study claimed that a lack of awareness in medication efficacy among patients, as well as misalignment with physicians regarding satisfaction of treatment, leads to trepidation among patients—which in turn could lead to undertreatment and increased disability.
Investigators, led by Daniel Sumpton, PhD, aimed to improve knowledge and accountability with medical teams in supportive and collaborative environments, as well as describe patients’ experiences and values in the shared decision-making process in order to improve patient-centered care in people with psoriatic arthritis.
Investigators used the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) to report the study.
Patients aged 18 years and older were recruited from 2 tertiary referral centers in Australia. The requirements included a psoriatic diagnosis by rheumatologist, and all participants had to be English-speaking. Purposive sampling was used to promote a diversity of perspectives.
In total, 25 patients participated in the study, and data was collected on each individual form March 2019 to February 2020. Data included face-to-face semi-structured interviews with all patients.
Patients were asked questions regarding making decisions about medications and preferences for involvement in medical decisions.
Throughout the study, researchers identified 5 themes: lacking agency in decision making, overwhelmed by potential harms, gaining confidence, opting for alternatives, and developing trust and fortifying collaboration.
Within the themes mentioned were a variety of comments and concerns in regard to psoriatic arthritis, treatment of the condition, and the dialogue (or lack thereof) on the condition.
In regard to the “lacking agency” theme, many patients recorded various frustrations about key decisions that were being made by their rheumatologist or dermatologist without their involvement.
At the same time, some participants did not expect to be offered a choice, as they trusted their rheumatologists to make decisions on their behalf and wished to avoid conflict with their doctor.
Opinions on medications were varied and complex.
According to the study, some patients felt as though they had no choice but to take medication to avoid “crippling” pain and mobility issues. Others felt as though the lack of evidence or information on various medications prompted them to “run blindly into this trying to find a treatment that will work”.
Responses on confidence and various therapies were also considered.
The study showed that more participants were willing to take part in shared decision making if or when they witnessed improvements in their skin or self-esteem. Greater confidence was noted in patients who had already experienced different medications and therapies throughout their lives, with one patient stating how they felt they had to “travel that journey” to gain confidence in choosing medications.
Regardless of the themes presented in the study, the overall complications with each one dealt with confidence, trust, and knowledge. According to the study, patients who had stronger connections to their doctors, or had undergone various therapies and medication plans, felt more confident.
However, many patients in the study felt “embarrassed” by the condition of their skin, lacking in knowledge on their condition, and fearful of various treatments due to that lack of knowledge.
Hicks and colleagues noted that similar studies had been made on separate rheumatic conditions such as rheumatoid arthritis and scleroderma.
The team also cited knowledge imbalances and communication barriers as hindrances to progress in the dialogue between patients and health care professions and suggested that patients with psoriatic arthritis could benefit from greater transparency and increased care.
“People with psoriatic arthritis gain confidence in decision-making with time and rely on consistent and open communication from health professionals to build trust in being active members in these decisions,” the investigators wrote. “Interventions that enhance patient knowledge and develop a trusting and supportive environment may help people with psoriatic arthritis to be active members in shared decision-making.”
The study, “Patients’ perspectives on shared decision-making about medications in psoriatic arthritis: an interview study,” was published online in Arthritis Care & Research.