Patient experiences and recommendation for RA-ILD
Research type
Research Study
Full title
Patients’ experiences and coping with RA - ILD and their recommendations
IRAS ID
319483
Contact name
Gouri Koduri
Contact email
Sponsor organisation
Southend University Hospital
Duration of Study in the UK
0 years, 9 months, days
Research summary
Research Summary
Rheumatoid Arthritis(RA) associated Interstitial Lung disease(RA-ILD) contributes significantly to overall morbidity and mortality and yet is still relatively poorly understood. Recent research has provided a better understanding of the genetics and pathogenesis in RA-ILD, however there is a great deal yet to be learned and further studies are in progress.RA highly impacts patients on several life dimensions but having ILD as an additional complication further worsens their quality of life. It is also challenging for physicians to provide management for both articular and ILD given the lack of guidelines. In addition to pharmacological therapy, patients with progressive ILD will need supportive therapy including Oxygen supplement, physiotherapy, and psychological support. There is paucity of literature on patient perception of the disease, their understanding and needs. If, however, clinicians had information on their patients' level of knowledge and needs, they could support and develop integrated care service for these patients. Patient-centred care is gaining more attention in the last decade and has become a key part of audits of care organizations. There are studies that have clearly demonstrated that the physicians and patients have a different perception of the disease. Bridging that gap will necessitate a change in medical practice which will be more patient centred. The findings from this study will demonstrate the value of seeking patients’ perspectives of a chronic disease such as RA-ILD and how this information can be used to guide improvements in care, to best support the needs of patients with this devastating condition. In RA -ILD care, no studies have investigated the impact of self-management and patients’ coping strategy. The aim of this study was to explore the experiences of patient to gain insight into how to best support the physical and psychological needs of individuals diagnosed with ILD.
Lay summary of study results
We have summarised the results of our study, which looked at the experiences of people living with both rheumatoid arthritis (RA) and interstitial lung disease (ILD) — a lung condition that can develop as a complication of RA.
To better understand patients’ needs, we asked people with RA-ILD to complete a questionnaire about their experiences. The study took place across six hospitals, with full ethical approval.
Key findings:
Many patients had not received enough information about ILD.
Most felt they were not fully involved in decisions about their care.
Only about half were regularly seeing a lung specialist or having lung function tests.
Most needed help from family or carers in daily life and found it difficult to do even moderate activities.
Patients expressed a strong need for:
Clear, accessible information about ILD.
More frequent appointments with specialists.
Earlier referral to specialist centres.
Better communication between healthcare professionals.
This is the first study to explore patient perspectives in RA -ILD. It highlights a clear need for better education, support, and joined-up care. Patients would benefit from improved services that involve the full healthcare team — including nurses, psychologists, and pharmacists — to meet their complex needs.
REC name
East of England - Cambridge East Research Ethics Committee
REC reference
22/EE/0303
Date of REC Opinion
11 Jan 2023
REC opinion
Further Information Favourable Opinion