Recent articles published in Rheumatology Advances in Practice show that less than 30% of patients with lupus and other systemic autoimmune rheumatic diseases felt medically supported during the first wave of the pandemic.
A team of researchers from the University of Cambridge's Behavioural Science group, led by Melanie Sloan, explored the impact of the pandemic on medical and healthcare behaviour, as well as patients’ experiences of shielding. They did so using a combination of surveys and interviews to identify themes and highlight powerful patient quotes, looking at multiple measures of wellbeing and mental health.
Of the ongoing research, Dr Peter Lanyon, Consultant Rheumatologist at Nottingham University Hospitals, said: "Without doubt these are the most powerful articles I've read about patient-physician interactions in lupus. The theme of medical security vs abandonment... is so relevant. This research is very applicable to how we restore and optimise rheumatology services."
Disparities in care
Great disparities in care were also highlighted; while some rheumatology departments maintained contact, care and accessibility, most patients reported cancelled appointments. Many made multiple unsuccessful attempts to access medical support, leading to worsening physical and/or mental health.
Despite fear, isolation and reduced medical support impacting heavily on patient health, some wellbeing measures showed significant improvements. This included reductions in the negative impact of fatigue and pain on daily lives, likely because lockdown provided more opportunity for pacing and rest.
Prof Caroline Gordon, study co-author, said: “This research highlights the importance of access to and continuity of medical care, and listening to patient views and experiences. Medical staff can have a profound positive or negative influence, not just on physical health but the patient's whole wellbeing and ability to cope with their disease, particularly during stressful experiences such as shielding.”
Negatives and positives
The team's earlier research found persisting medical insecurity and psychological damage among many patients with lupus and undifferentiated connective tissue disease. This was often initiated by diagnostic difficulties and negative medical interactions where many reported feeling 'unsafe', 'unheard' or 'dismissed'.
Trust, security and positive patient behaviours were improved by clinicians who were quickly available in a health crisis, validated and believed patient-reported symptoms and ensured continuity of compassionate care.
Melanie Sloan said: “These studies build on our earlier findings of the importance of medical security and accessibility. Our future research will elicit rheumatologist and patient views to further explore – and hopefully improve – medical relationships in terms of influencing patient trust, mental health, and behaviours such as medication adherence and symptom reporting.”
Listen to Melanie describe her findings and own experiences in a recent BBC Look East interview, or on BBC Radio Cambridgeshire (skip to 1:13:45).