Giant cell arteritis (GCA) is a systemic vasculitis with numerous potential complications and societal costs. After the publication of international guidelines, we found a number of deficiencies in the local care pathway of patients suspected to have GCA. These included poor referral and management pathways, and absence of dedicated monitoring and followup. In this paper, we describe a 10-year transformation which led to our service being nominated for a national award.A comprehensive consensus pathway saw referral numbers rise from 19 to 135 from 2012 to 2019. A consensus management pathway has meant that patients are assessed within 2 days of referral and glucocorticoids started at point of referral. All patients with suspected GCA are clerked and managed according to this agreed pathway which is available on the hospital intranet. The introduction of diagnostic ultrasonography has meant that the need for biopsies has dropped by >80% reducing the annual cost of diagnostics by >£140,000. The introduction of a vasculitis specialist nurse has resulted in improving education, contact and speed of access to our service. The improvements in the service resulted in our service becoming a finalist in the Royal College of Physicians Excellence in Patient Care Award in 2020.
Objective GCA is the commonest primary systemic vasculitis in adults, with significant health economic costs and societal burden. There is wide variation in access to secondary care GCA services, with 34% of hospitals in England not having any formal clinical pathway. Quality standards provide levers for change to improve services. Methods The multidisciplinary steering committee were asked to anonymously put forward up to five aspects of service essential for best practice. Responses were qualitatively analysed to identify common themes, subsequently condensed into domain headings, and ranked in order of importance. Quality standards and metrics for each domain were drafted, requiring a minimum 75% agreement. Results 13 themes were identified from the initial suggestions. Nine quality standards with auditable metrics were developed from the top 10 themes. Patient Access, glucocorticoid use, pathways, ultrasonography, temporal artery biopsy, PET scan access, rheumatology/ophthalmology expertise, education, multidisciplinary working have all been covered in these quality standards. Access to care is a strand that has run through each of the developed standards. An audit tool was developed as part of this exercise. Conclusion These are the first consensus auditable quality standards developed by clinicians from rheumatology and ophthalmology, nursing representatives and involvement of a patient charity. We hope that these standards will be adopted by commissioning bodies to provide levers for change from the improvement of patient care of individuals with GCA.
Background/Aims Glucocorticoid therapy is the mainstay treatment for giant cell arteritis (GCA). There is no consensus on the dose of prednisolone to be used. Prednisolone regimens used in clinical trials have reported relapse rates of 66-92%. The long-term follow-up of tocilizumab and prednisolone for one year showed a relapse rate of 74% at two years. The Norwich Regimen is a bespoke prednisolone plan with an initial dose of 1mg/kg of lean body mass. It delivers 164.64 mg/kg of lean body mass in a logarithmic taper over 100 weeks. It was devised to reduce the risk of relapse and allow patients to be in control of their prednisolone reduction. Methods All patients were diagnosed by biopsy, ultrasonography or PET scan and provided with a printed prednisolone plan at diagnosis. All individuals were assessed at approximately 3-6 monthly intervals in addition to suspected relapse, toxicity or other need for course correction. Relapses were confirmed objectively using a modification of the Kerr criteria. Relapse free survival was recorded at 100 weeks. Patients were given an open invite to contact us in the event of a suspected relapse after coming off prednisolone. A notes review was done to record events at 150 weeks. Results 150 consecutive people with objectively diagnosed GCA (mean age 74) since 10/01/2012 have completed 150 weeks since starting prednisolone. Drug-free, relapse-free survival at 100 weeks was met by 133/150 (89%). Seven individuals died and 20 relapsed. A further five died and 15 relapsed by week 150; 103/150 (69%) survivors were in prednisolone-free remission. Of the 12 deaths, six died of cancer, one subdural haemorrhage, one ischaemic bowel, one septicaemia, and one general decline (aged 93). The cause of death was not available for two individuals who died in the community. The median time to relapse for the 35 individuals was 80 weeks (IQR 64,109). Conclusion We report the first results of a bespoke prednisolone taper to be used in real life. The Norwich Regimen for the treatment of GCA results in drug-free relapse-free survival of 89% at 100 weeks and 69% at 150 weeks, which is superior to all other reports published so far. Disclosure G. Ducker: None. K. Mills: None. C. Yong: None. C. Jones: None. C. Mukhtyar: None.
Background/Aims The ophthalmic features of giant cell arteritis involve a spectrum of severity, from transient symptoms to bilateral visual loss due to anterior ischaemic optic neuropathy or, less commonly, central retinal or cilioretinal artery occlusion. Data of reported ocular involvement are varied, with a range of 10-70%. The variation may be related to the specialty of the unit reporting the data. We run an interdisciplinary service in a tertiary academic unit and report a complete picture of the frequency and nature of ocular involvement in GCA. Methods The records of 350 consecutive patients, diagnosed objectively on the basis of biopsy or imaging, were reviewed. In our centre, the hospital pathway mandates all individuals with suspected GCA to have a formal ophthalmology assessment including visual acuity, pupil exam and full dilated fundus assessment. We recorded the common signs and symptoms using a structured form which included ophthalmologic symptoms and examination findings, along with symptoms commonly associated with GCA: scalp tenderness, headache, jaw claudication, shoulder girdle stiffness, anorexia, night sweats, weight loss, and fever. Results From January 2012 to September 2021, 350 individuals were diagnosed with GCA by biopsy, ultrasonography or positron emission tomography. The mean age was 74 ± 7.7 years. 237 (68%) of patients were females. 99 (28%) presenting with GCA had visual symptoms and or signs. 34 had mono-ocular and two had binocular loss of vision. A summary of the key visual symptoms and signs are shown in Table 1. Only five patients with visual symptoms did not have any symptoms commonly associated with GCA. Conclusion We report the frequency of visual involvement in one of the largest cohorts of individuals with GCA. 28% have ocular symptoms. Partial or total monocular field loss occurred in 12% of cases. 1.4% of patients may be presenting with visual symptoms as the only sign of GCA. Rarely, permanent visual loss may occur without any other manifestation of GCA. Disclosure S. Mansfield Smith: None. M. Al-Hashimi: None. G. Ducker: None. C. Jones: None. C. Mukhtyar: None.
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