University Hospitals Birmingham NHS Trust
Co-ordinating a patient-centred pathway to high-quality care for people with rare
The Optimising Assessment in Sjögren’s Syndrome (OASIS) clinic at the University Hospitals Birmingham NHS Trust has streamlined access to multidisciplinary diagnostics and care for patients with the rare autoimmune disease Sjögren’s syndrome, and has increased departmental income through increased referrals. Patients are invited to participate in clinical research to help meet the unmet need that is now being recognised by those developing treatments for this rare disease.
- 100% of patients using the OASIS clinic would be extremely likely or likely to recommend the service to a friend of family member
- 84% of the patients seen in the OASIS clinic participate in research
- Patients with rare diseases face many challenges to get the right care, particularly when multidisciplinary care is needed. Diagnosing these conditions can be difficult as input from multiple specialties is often required to obtain a meaningful diagnosis.
- Sjögren’s syndrome is a rare autoimmune disease that leads to dryness of the mouth and eyes, complications relating to these, and also systemic manifestations. Patients with Sjögren’s syndrome therefore require input from rheumatology, oral medicine and ophthalmology.
- Currently there is huge unmet clinical need in primary Sjögren’s syndrome but considerable interest from industry in developing new agents, giving added importance to research into this condition
- The “Optimising Assessment in Sjögren’s Syndrome (OASIS) clinic” was set up to improve the diagnostic pathway for primary Sjögren’s syndrome, increase access to multidisciplinary care, and increase participation in research.
- The OASIS clinic is led by rheumatology and offers patients detailed rheumatic, ophthalmic and dental examination, ultrasound and biopsy, and comprehensive disease activity assessment.
- The diagnostic pathway has been improved by:
- Clinic nurses performing essential Sjögren’s syndrome-specific tests prior to consultation
- Availability of an eye room in the clinic allowing eye examination
- Provision of a dedicated monthly biopsy clinic with analysis by a dedicated histopathologist offered to all new referrals
- The OASIS clinic has also enabled the team to set up a longitudinal cohort of patients with primary Sjögren’s syndrome to facilitate clinical research.
Service Performance and Outcomes
- Improved diagnosis: New patients have streamlined access to a MDT in a single visit, with a follow-up visit to facilitate diagnosis. After a review of salivary gland histopathology the team at OASIS developed consensus guidelines to improve reporting, which has been crucial for the diagnosis of 27% of the new patients screened.
- Access to MDT care: New patients are now seen in twice monthly MDT clinics led by rheumatology and with ready access to biopsy and integrated histopathology, improving the overall management plan.
- Access to research: All patients in the cohort have routine measurement of patient-reported outcome measures and systemic disease activity indices, helping recruitment into clinical trials. 84% of the patients seen in the OASIS clinic participate in research.
Financial Performance and Outcomes
- Primary Sjögren’s syndrome is associated with significant direct and indirect costs, which can be up to ~80% of those associated with rheumatoid arthritis and represent a significant impact on the healthcare system.
- Since the OASIS clinic launched in 2014, the number of patients seen has increased more than 3-fold (from 40 in the first half of 2013/14 to 127 in the first half of 2015/16), increasing departmental income for this service over 3-fold too.
Patient Focus and Satisfaction
- Patients receive information about OASIS before their first appointment, they are actively involved in a patient and research team partnership, and there is a local Sjögren’s syndrome support group that is actively supported by OASIS staff.
- The service is endorsed by patients; of 49 patients who completed the Friends and Family Test between January 2015 and March 2015, 47 were “extremely likely” and 2 were “likely” to recommend the service.
The Birmingham University Hospitals NHS Trust OASIS clinic is an example of commissioning best practice in rheumatology and meets a number of priorities for commissioners, clinicians and patients:
- Patients should receive a focused, coordinated diagnostic service – patients now have coordinated access to the specialists and tests required to make a diagnosis, meaning fewer hospital appointments.
- Coordinated care – patients now require fewer appointments for their diagnosis, and see all specialists across different services in the same clinic for their annual review, minimising disruption.
- Opportunities to participate in research – all patients seen at the OASIS clinic are invited to take part in clinical research, furthering opportunities for clinical research into their rare disease.
The service is an outstanding best practice model for all services that care for patients with rare diseases, showing how research and clinical practice can be integrated to improve the patient journey as well as research opportunities.