Patients Get a Voice in PsA Guidelines and Research

For years, there’s been a gap between patient and clinician perspectives on the impact of psoriatic arthritis (PsA) and other forms of arthritis. That divide is now being bridged by an active partnership between clinicians, researchers, and PsA patients in setting clinical criteria and treatment recommendations.

“It’s not about ‘consulting’ patients, asking for their perceptions, but making them part of the process from the start," says Maarten deWit PhD, a PsA patient and researcher from the Netherlands, who co-chairs the Patient Research Partners (PRPs) committee formed by the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). "It is thinking about what are our objectives, our research questions, what are the things from a patient perspective that we should not forget and include in our studies and guidelines,”

This year, patients were front and center in the effort to update GRAPPA’s 2009 treatment recommendations and disease criteria. Each of the break-out groups on key aspects of psoriasis and PsA at the GRAPPA annual meeting in New York had one to two voting members who were patients.

“There wasn’t much patient involvement in the previous treatment recommendations (2009) and that’s what we are hoping to fix this time around,” says Laura C. Coates MD of the Leeds Institute of Rheumatic and Musculoskeletal Medicine, who chaired the break-out group on dactylitis treatment recommendations. “We need patient feedback on values and preferences, especially on what drugs to give and when.”

Joining the Inner Circle

GRAPPA's patient research partners "are not activists, they are not advocates," de Wit said in an interview with Rheumatology Network. "They are invited by their physicians to act from their personal experience of having the disease.”

It was that kind of input at the international Outcome Measures in Rheumatology (OMERACT) organization that put fatigue on rheumatologists’ radar in 2002, when the group invited patients to help work on a “core set” of criteria for rheumatoid arthritis. By 2006, fatigue had made it into the RA core set, he notes.

“Patients were quite persistent in bringing it forward and some very receptive researchers listened to them," de Wit remarked. "Although it has taken 10 years, we now have clinical trials with fatigue as a primary endpoint. Because we know what it is, we can now measure it, and find pharmaceutical and non-pharmaceutical therapies, like physical therapies.”

“Patients also brought other items to research agenda," he added. "Now we are trying to understand what a disease flare is, and is it different in RA or PsA?”

Other rheumatology groups are following OMERACT’s lead.

The European League Against Rheumatism (EULAR) EULAR began soliciting patient input in 2006, and subsequently issued recommendations to include patients in its research projects. The result: A patient-derived and patient-reported outcome measure, the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, to which de Wit also contributed.

The American College of Rheumatology (ACR) is now using patient advocates in its “Simple Tasks” campaign and in the group’s Rheumatology Research Foundation, a spokeswoman says.

GRAPPA began its own initiative in 2012, with the formation of a special interest group, the Patient Involvement for Outcome Measures in PsA (PIOMPsA), to address the lack of patient input in outcomes measures.

Making a difference

Over the past year, there have been at least a dozen journal reports and studies on PIOMPsA and other initiatives.

Two British Medical Journal reports on a decade of OMERACT find that, despite the skepticism of researchers, patient participation has widened its research agenda, including patient-relevant outcomes in core sets, and enhancing patient reported instruments.  For their part, patients identified “previously neglected outcome domains such as fatigue, sleep disturbances, and flares which prompted collaborative working on new programmes of research.”

“It’s clear that patients are bringing a valuable perspective to the table,” comments Oliver FitzGerald MD, the Newman Clinical Research Professor at the University College Dublin's Conway Institute for Biomolecular Research, who has been involved for more than a decade in efforts to bring patients into the process.

Break-out sessions at the GRAPPA meeting reflected patient input on myriad issues, from a “disconnect” about the validity of some PsA disease criteria to the impact of the treatments on quality of life.

“Regardless of how good doctors are, and they have done a wonderful job in the psoriasis and PsA areas especially with the new biologics, there’s always a slight mismatch between the medical world and the patients’ world, and what we think is important may not be what they think is important,” comments Ina Campbell, 67, a PsA patient from Toronto, Canada, who co-chairs the GRAPPA PRP group with de Wit.

“For example, the doctor puts one thing down on an assessment and it doesn’t match with what the patient feels. That can affect treatment,” says Campbell, who was diagnosed with PsA in 1995.

She cites an Irish PsA assessment study presented by a research fellow at the GRAPPA meeting, in which patients were asked to do their own joint counts. When compared with those made by doctors and nurse practitioners, the patients gave a higher – and apparently more accurate – joint count.

“Why? Because they actually feel it,” says Campbell. “So if physicians want to be brought up to speed, that’s where we can help them.”