Improving the quality of care for people with giant cell arteritis

The improvement in referral numbers

From the scoping exercise in December 2010, we found that of the 27 cases diagnosed with GCA, seven had presented to rheumatology and a further nine had received a follow-up appointment in a rheumatology clinic. We established a GCA clinic in February 2012 and in the first year received 19 GCA referrals. By 2019, the service received 137 referrals, of which 51 were diagnosed as having GCA. Table 1 shows the steady rise in numbers of referrals and diagnosed cases from 2012 to 2019. The spike in 2017 was a direct consequence of the establishment of the diagnostic ultrasonography service.

Improving the patient journey

An interdisciplinary group with representation from acute medicine, geriatrics, stroke medicine, neurology, ophthalmology and rheumatology first met in April 2014 to streamline the referral pathway for suspected GCA. A Trust-wide pathway was agreed which ensured that all suspected GCA with ocular symptoms would be referred to the ophthalmology team and the others to the rheumatology team. The advice and management pathway would start immediately, and formal review would happen within 24 hours for those with suspected visual involvement and 48 hours for those without. All suspected GCA cases would be clerked on a specific sheet which gave prompts for the history, examination findings and investigations. The Trust pathway and clerking sheets were made available on the Trust Intranet.

For standardisation of treatment, specific indications and contraindications were created for the use of intravenous methylprednisolone. On the basis of evidence from a systematic literature review, three statistical models were created by CM and reviewed by all members of the rheumatology department and CJ for sense check and face validity. There was unanimous agreement on the use of a statistical model which was tailored to height, weight and gender of the patient. We called it the ‘Norwich prednisolone regimen’, and presented it locally, nationally and in a peer-reviewed publication.⁵ Since March 2011, all newly diagnosed patients with GCA were treated using that regimen.

The European recommendations for the management of GCA were published in 2009, and the British recommendations in 2010.^3,7 Both recommended temporal artery biopsy (TAB) for the diagnosis of GCA. However, the technique of ultrasonography had been evolving since 1995,⁸ and we were an early adopter of the technique. CM learnt ultrasonography in March 2013 and over subsequent years validated the results against long-term outcomes. In a validation exercise involving 25 patients followed for 100 weeks, ultrasonography proved more reliable than TAB or even baseline diagnosis.⁶ The hospital diagnostic pathway included the use of ultrasonography for all suspected GCA followed by TAB or positron emission tomography only if the ultrasonography was normal in cases with a high suspicion of GCA. This culminated in a formal ultrasonography service being commissioned from January 2017. From 2007 to 2009, 162 individuals with suspected GCA were reviewed in NNUH and all of them had biopsies, of which 86 (53%) were positive. From 2017 to 2019, we saw 419 individuals with suspected GCA, of which 69 (16.5%) needed a biopsy, of which 20 were positive. The numbers diagnosed on the basis of TAB and ultrasonography are shown in Table 1.

Patient empowerment

Specialist nurses have a positive impact on patient care and patients themselves hold specialist nurses in high regard.⁹ Individuals with GCA have complex needs and potentially organ-threatening disease. Patients with vasculitis who have received education have been found to have better outcomes.¹⁰ The specialist nurse is ideally placed to provide education to patients about their condition and management. Fear and anxiety can impede a patient's ability to retain and recall information especially when they are not feeling well.¹¹ By providing a nurse-led outpatient service, patients have the opportunity for regular contact with the vasculitis nurse.

The process of empowering patients started with the establishment of a formal GCA service which ensured that all patients received written information about the disease and the drugs, and a printed regimen tailored to their gender, height and weight. The appointment of a specialist nurse in November 2019 has meant that each patient has time to discuss their management in detail. This holistic approach has enabled patients to benefit from discussions on treatment issues, disease activity and psychosocial aspects. At diagnosis, all patients receive a 30-minute appointment for education about GCA, prednisolone and any further immunosuppression that might be needed, with updates as necessary. Patients also receive an emergency contact number. They can either contact the team directly in the working day or leave a voicemail for urgent support. At every follow-up appointment, patients receive copies of their consultation letters and all correspondence between the GCA service and the primary care physician. All requests for support on aspects of daily living and health involving either GCA or its treatment are handled by the vasculitis nurse. All patients with suspected relapse undergo further ultrasonography to look at the state of the vessels and further immunosuppression is offered as appropriate sequentially with methotrexate and tocilizumab.¹²

Cost-effectiveness of the service

We have managed to create a service worthy of a national award in the space of 10 years. This has been supported by expansion of staff (1 band 7 vasculitis specialist nurse) and the purchase of high-end equipment (GE Logiq e ultrasound machine with 4–12 MHz, 8–18 MHz and 10–22 MHz probes). The capital investment for the ultrasonography machine was supported in its entirety by the Norfolk and Norwich Hospitals Charity (Charity Number 1048170).

To compare the costs of making a diagnosis by ultrasonography ± biopsy vs first-line biopsy for all, we compared our diagnostic throughput in the years 2007–2009 (prior to any pathway) vs 2017–2019 (full diagnostic pathway in place). For ease of comparison, we used the 2018–2019 agreed tariffs for all the data. TAB costs the NHS, a minimum of £1,284 per procedure (cost code YQ41B). The cost rises to £1,948 (cost code YQ41A) in the presence of comorbidities. The cost of a vascular ultrasound scan is £51 (cost code RD47Z). Table 2 shows the costs of running the service now as compared to the cost of running it 10 years ago (corrected to 2018–2019 tariff). The cost of running the service as it used to run in 2007–2009, without the innovation of ultrasonography would be a minimum of 419 × £1,284 = £537,996. In 3 years, we have saved £428,184 to the UK health economy in GCA diagnostics.