ABSTRACT
Background/AimsPatient and public involvement (PPI) initiatives are important to ensurepatient-centered research. However, traditional focus groups canpresent challenges including the recruitment and retention of patientpartners. Additional challenges to patient involvement have also arisendue to the coronavirus pandemic (COVID-19). The University CollegeLondon (UCL) Patient Partners in Rheumatology Research initiativehas been developed to explore novel ways to boost patientinvolvement and foster an active collaboration between basicresearchers and patient partners.MethodsTwo online surveys were designed to obtain information with regardsto the expectations and practicalities of this initiative. One survey wassent to patients who had registered an interest in being patientpartners and the other survey to rheumatology researchers at UCL andUniversity College London Hospital (UCLH).ResultsWe received responses from 25 researchers and 21 patients. Themajority of patients who responded (71%) had not previously beeninvolved in PPI. Most of the researchers (84%) had previously utilisedPPI, however 20% of those had some difficulty accessing it.Most patients (86%) were interested in becoming a patient partner.Amongst those with reservations, one stated that ''I don't think I havethe qualifications to be involved with scientists and researchers''. Overhalf of patients (52%) were happy to participate in PPI more than fivetimes a year and most researchers (84%) expressed that five times ayear was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to socialrestrictions because of COVID-19, we asked both patients andresearchers their preferred mode of meeting. Both groups favoureda mixed (virtual and face to face) meeting arrangement (81% forpatients and 68% for researchers). A third of patients (38%) expressedthat they would need technical assistance accessing a virtual meeting.Almost all patients (95%) were happy to contribute to lay summaryreviews remotely via email.ConclusionBased on the insights gained from the survey results, our PPI initiativemeetings will be hosted in a hybrid virtual/face to face format. Thesewill be held at a time and frequency that is convenient for the patientpartners to increase participation across wider demographics. Thissurvey has highlighted that we have to be mindful of certain patientperceptions of PPI which creates a barrier to patient involvement andthat some individuals may require further support in accessing virtualmeetings. By designing a PPI initiative that creatively addressed theneeds of both the researchers and patient partners we hope to createa platform for productive dialogue and collaboration to ensure patientcentred research, despite the changes brought about by the COVID-19 pandemic.
ABSTRACT
Background/AimsThe COVID-19 pandemic has created many challenges for patientswith chronic rheumatological diseases. SpA - which includes ankylosing spondylitis (AS), axial spondyloarthritis (axSpA), psoriatic arthritis(PsA), and enteropathic arthritis - often affects young people who areotherwise fit and able. Many SpA patients take immunosuppressivemedications and therefore were advised to shield. In view of this, weconducted a survey to better understand how shielding has affectedthe physical activity and symptoms of SpA patients during thepandemic.MethodsAn online anonymised survey was created and advertised via socialmedia from 4th June to 4th July 2020. Patients with SpA were invitedto complete the survey which included 18 questions exploring theimpact of the pandemic on their symptoms, physical activity levels andmedication use.ResultsThere were 136 survey respondents, of whom 74.3% were female, with an age range from under 25 to over 75 years. The underlyingdiagnoses were PsA (60.5%), AS (28.4%), axSpA (10.5%) andenteropathic arthritis (0.8%). The majority (66.7%) of respondentswere shielding;44.1% were on disease modifying anti-rheumaticdrugs (csDMARDs) and 56.6% were on biologics (bDMARDs). Most(94.1%) had continued their DMARDs throughout the shielding period.Non-steroidal anti-inflammatory drug (NSAID) use was reported to beincreased in 18.6% of respondents, and unchanged in 69.0%.Compared to before the pandemic, 54.8% reported worsening jointstiffness and 45.6% reported worsening joint pain.Most respondents (67.6%) reported reduced levels of physical activity, the commonest reasons being: shielding (54.6%);increased fatigue(45.8%);concerns around social distancing (45.4%);poor sleep quality(38.6%);working from home (28.6%) and low mood (28.6%). Only14.7% had attended a virtual exercise class.ConclusionApproximately 2 in 3 patients with SpA reported they were shieldingduring the first wave of the pandemic. Similar numbers of patientsreported reduced physical activity levels and increased joint stiffnessover this time. It is important to acknowledge that given the nature ofthe anonymised survey, we cannot be certain if the same patients whowere shielding were the same as those who had reduced levels ofphysical activity or worsening symptoms. We have, however, shownthat over half of the surveyed patients attributed their reduced physicalactivity levels to shielding. Taking into account that social restrictions(either self-imposed or government advised) are likely to be ongoing, we believe that a focus should be placed on supporting patients tomaintain their activity levels, through initiatives such as specialistvirtual exercise classes.