Clinician and patient views on a new rheumatology drug: Article published by a Patient Researcher

Savia de Souza, who is a Patient Researcher and King’s Clinical Research Facility (CRF) Patient and Public Involvement (PPI) member, tells us about her recent publication on a new rheumatology treatment. Rheumatology is the branch of medicine that diagnoses and treats conditions affecting the muscles and joints, for example, rheumatoid arthritis.

How the study came about 

“In late 2019, I saw my Rheumatologist as my current treatment, known as a biologic, was not working so well at controlling my rheumatoid arthritis anymore. He said I could either try a different biologic or switch to something new called a JAK (janus kinase) inhibitor. He signposted me to a patient charity website where I could read more about these new drugs and said to let him know my decision. 

After reading information on the new class of drugs, I still wanted to know what patients who were taking them thought and what their experiences had been (both positive and negative). Having a scientific and healthcare background, I immediately turned to PubMed, a search engine for research papers, to see if there was any published research on this. I couldn’t find anything, though this wasn’t surprising as JAK inhibitors were only recently licensed, and some were still in clinical trials. At best, with a Google search, I found what one clinician believed their patients would think of them and their potential benefits. To me, that was just one person’s opinion. So, I decided this was a topic that required further investigation, and the idea for this research study was born.

In 2020, I approached Dr Elena Nikiphorou who is a Consultant Rheumatologist at King’s College Hospital to run my idea past her. She agreed to support me with the study, seeing the value of this work and the impact it would have on patient care, taking on the role of Principal Investigator and helping to drive the process forward. I also asked a long-term collaborator and fellow Patient Researcher at King’s College London, Dr Ruth Williams, if she would come on board. Together, we developed the study idea and expanded it to also include clinicians’ views (as they may be different from those of patients) and to capture if the COVID-19 pandemic was having any effect. We successfully secured funding from Pfizer, which allowed us to employ the Research Associate Dr Andrew Bassett to work on the study.”

PPI in the study 

“Both Ruth and I are patients with rheumatoid arthritis, so patient involvement was present from the start and throughout the study. However, we wanted to have wider opinions from patients without a healthcare background. We approached two patients, Carol Simpson and Tom Esterine, with inflammatory arthritis who are Expert Patients in the Centre for Rheumatic Diseases at King’s College London. They helped with further developing our patient survey, our focus group topic guide, and looking through all patient-facing materials for the study. Some changes to the questions and language used were made based on their feedback. This helped to ensure that the study would be understood by patients wishing to participate.

Ruth co-facilitated the patient focus groups with Andrew, and I had a main role in carrying out a secondary analysis of the qualitative data in the study. Along with Elena, we all worked together closely in interpreting the findings and drafting the scientific abstracts and manuscript. Our Expert Patients were thanked for their help in the acknowledgments.”

Dissemination of study results 

“A summary of the study results was shared with all participants (clinicians and patients) who indicated they wished to receive them, and with the Expert Patients. All were encouraged to share within their networks. Summaries were also sent to the charities who helped us with patient recruitment: the National Rheumatoid Arthritis Society (NRAS) and the Psoriasis Association. Results from the study were presented as posters at international conferences in Denmark and the USA. Abstracts from these conferences and our full paper published in 2024 were shared on X (formerly Twitter).”

To read the full paper, please visit:
https://bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-023-00370-7 

To read the published conference abstracts, please visit:
https://ard.bmj.com/content/81/Suppl_1/1122.2

https://acrabstracts.org/abstract/patient-perspectives-on-janus-kinase-inhibitor-use-in-the-treatment-of-inflammatory-arthritis/

If you're a rheumatology patient looking for support, please visit: 
https://nras.org.uk/

www.versusarthritis.org

https://www.psoriasis-association.org.uk/

To learn more about PPI at King’s CRF, please visit:
https://www.maudsleybrc.nihr.ac.uk/nihr-kings-clinical-research-facility/for-patients-and-public/