“Heavy duty”, “scary” or “poisonous” are some of the words psoriatic arthritis patients use to describe their DMARDs – highlighting the fact that the potential toxicity of systemic medications is one of their main concerns.

A Sydney study, comprising face to face  interviews with 25 adults with PsA, identified five themes around shared decision-making on treatment :

• lacking agency in decision making
• overwhelmed by potential harms
• gaining confidence
• opting for alternatives
• and, developing trust and fortifying collaboration

Some patients felt their disease and the treatments were too difficult to understand to make meaningful contributions to their care; others felt they were denied choice.

“Being faced with “crippling” pain, limited mobility and being embarrassed by psoriasis, participants felt they had no choice but to take medication. Some were desperate for a solution and “wanted anything that would reduce inflammation, and just make me feel well again”, the study authors said.

However they were also concerned that potential side effects of treatment might interfere with their ability to care for their family or interrupt their work schedule.

Younger participants were worried that csDMARDs or biologics could reduce their ability to conceive or lead to birth defects.

The good news was that patients did develop more confidence and felt more empowered as they gained more knowledge about their disease, experienced relief from symptoms, and learnt from family and peers.

Being involved in shared decision making allowed for participants to gain a sense of control over their situation and assert their autonomy.

The study, published in Arthritis Care & Research, found patients wanted to have a normal life and be free of medications.

They were suspicious of over-medicalisation, some felt doctors had conflicts of interest with pharmaceutical companies, and they sought lifestyle solutions or complementary and alternative therapies.

“Our study highlights the importance of clinicians developing trust when undertaking shared decision-making in psoriatic arthritis,” the researchers said.

“While trust in their physician enhanced involvement in shared decision-making for some, trust was also vital to people who preferred to leave decision-making to their doctor.”

The study noted that a patient’s level of confidence and preference for level of involvement in making decisions about their treatment were dynamic.

“We suggest that clinicians check and redefine their patients’ level of preferred involvement. Clinicians need to facilitate involvement in decision-making along the trajectory of illness and check assumptions made about previously prescribed treatment plans.”

The researchers, including rheumatologists Dr Barry Kane, Dr Michael Oliffe and Dr Geraldine Hassett, said treatment decisions aids specific to PsA might be useful.