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Abstract

Background/Aims

The objective of this project is to map services essential to delivering high quality care in giant cell arteritis (GCA) across England, identifying gaps in provision and thereby help to remove inequalities. To do this however, there must first be agreement on what these best practice services and standards are.

Methods

A steering committee was formed comprising 18 expert representatives from the 13 clinical regions in England, including rheumatology, ophthalmology, allied health professional and patient representation. A modified Delphi process was commenced with each member initially providing five aspects of service they felt were essential for best practice GCA care. From the 90 answers, common themes were identified by creation of a word cloud and then condensed into domains of practice. These domains were then ranked by each member in order of perceived importance. The top 10 domains taken forward for further review were clinical pathways, patient access, Rheumatology involvement, Ophthalmology involvement, ultrasonography provision, temporal artery biopsy provision, PET-CT scan provision, glucocorticoid treatment, patient education and multi-disciplinary team working. Domains identified as separate areas but not quite making it into the top 10 were Tocilizumab provision, audit and governance and research. With the latter two in particular, it was felt these are overarching principles which should run through all aspects of clinical work. Group consultation was undertaken to discuss the relevant aspects, and from this, three quality metrics and one summary statement were devised for each domain. Rheumatology and Ophthalmology provision were amalgamated, as it was felt these were equally as important, with similar requirements. On the first pass of voting all except ‘patient access’ achieved over 75% agreement amongst the steering committee members. After group consultation and amendment, ‘patient access’ also achieved the minimum 75% agreement cut-off. The final statements can be seen in the table below.

Results:

P126 Table 1
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final summary statements for each domain of best practice care for GCA.

DomainStatement of recommendation
Clinical pathwaysThere should be an established pathway for the investigation and care of individuals with suspected GCA, which is agreed across primary and secondary care, with clear entry and exit points, and clear time frames for initiation of investigations and glucocorticoid treatment.
Patient accessPatients with suspected new or relapsing disease should always be able to access a clinician with appropriate expertise or a helpline, leading to a preliminary management plan within 24 hours of patient access and a definitive review within 2 working days.
Rheumatology & Ophthalmology provisionThere should be nominated leads in rheumatology and ophthalmology with an interest in GCA who coordinate care, collaborate with the other specialities in the hospital, and run dedicated CTD/Vasculitis clinics for follow-up of patients with GCA.
Ultrasonography provisionDiagnostic ultrasonography for GCA should be adequately resourced with high-quality equipment and cross-cover to ensure that it is not dependent on a single machine or operator. Diagnostic ultrasonography for GCA should be performed within 7 days of starting prednisolone and the images should be reported using validated definitions and stored in the medical records.
Temporal artery biopsyTemporal artery biopsy provision should be adequately resourced and should not be dependent on a single surgeon. The biopsy should be of an adequate size, harvested within 4 weeks of starting prednisolone and reported in a standardised manner.
PET scan provisionPET scan for large vessel vasculitis should be done within 7 days of the request and reported by an experienced radiologist.
Glucocorticoid treatmentThere should be a provision and protocol for intravenous glucocorticoid. The shared care of oral prednisolone should include a written tapering plan and monitoring of complications of long-term glucocorticoid therapy.
EducationIndividuals diagnosed with GCA should be provided with written educational material about aspects of their care and have the opportunity to be educated by a health professional within 1 month of diagnosis and receive updates as required.
Multi-disciplinary teamThere should be defined local and regional MDT that formally discusses complex cases.
DomainStatement of recommendation
Clinical pathwaysThere should be an established pathway for the investigation and care of individuals with suspected GCA, which is agreed across primary and secondary care, with clear entry and exit points, and clear time frames for initiation of investigations and glucocorticoid treatment.
Patient accessPatients with suspected new or relapsing disease should always be able to access a clinician with appropriate expertise or a helpline, leading to a preliminary management plan within 24 hours of patient access and a definitive review within 2 working days.
Rheumatology & Ophthalmology provisionThere should be nominated leads in rheumatology and ophthalmology with an interest in GCA who coordinate care, collaborate with the other specialities in the hospital, and run dedicated CTD/Vasculitis clinics for follow-up of patients with GCA.
Ultrasonography provisionDiagnostic ultrasonography for GCA should be adequately resourced with high-quality equipment and cross-cover to ensure that it is not dependent on a single machine or operator. Diagnostic ultrasonography for GCA should be performed within 7 days of starting prednisolone and the images should be reported using validated definitions and stored in the medical records.
Temporal artery biopsyTemporal artery biopsy provision should be adequately resourced and should not be dependent on a single surgeon. The biopsy should be of an adequate size, harvested within 4 weeks of starting prednisolone and reported in a standardised manner.
PET scan provisionPET scan for large vessel vasculitis should be done within 7 days of the request and reported by an experienced radiologist.
Glucocorticoid treatmentThere should be a provision and protocol for intravenous glucocorticoid. The shared care of oral prednisolone should include a written tapering plan and monitoring of complications of long-term glucocorticoid therapy.
EducationIndividuals diagnosed with GCA should be provided with written educational material about aspects of their care and have the opportunity to be educated by a health professional within 1 month of diagnosis and receive updates as required.
Multi-disciplinary teamThere should be defined local and regional MDT that formally discusses complex cases.
P126 Table 1
Open in new tab

final summary statements for each domain of best practice care for GCA.

DomainStatement of recommendation
Clinical pathwaysThere should be an established pathway for the investigation and care of individuals with suspected GCA, which is agreed across primary and secondary care, with clear entry and exit points, and clear time frames for initiation of investigations and glucocorticoid treatment.
Patient accessPatients with suspected new or relapsing disease should always be able to access a clinician with appropriate expertise or a helpline, leading to a preliminary management plan within 24 hours of patient access and a definitive review within 2 working days.
Rheumatology & Ophthalmology provisionThere should be nominated leads in rheumatology and ophthalmology with an interest in GCA who coordinate care, collaborate with the other specialities in the hospital, and run dedicated CTD/Vasculitis clinics for follow-up of patients with GCA.
Ultrasonography provisionDiagnostic ultrasonography for GCA should be adequately resourced with high-quality equipment and cross-cover to ensure that it is not dependent on a single machine or operator. Diagnostic ultrasonography for GCA should be performed within 7 days of starting prednisolone and the images should be reported using validated definitions and stored in the medical records.
Temporal artery biopsyTemporal artery biopsy provision should be adequately resourced and should not be dependent on a single surgeon. The biopsy should be of an adequate size, harvested within 4 weeks of starting prednisolone and reported in a standardised manner.
PET scan provisionPET scan for large vessel vasculitis should be done within 7 days of the request and reported by an experienced radiologist.
Glucocorticoid treatmentThere should be a provision and protocol for intravenous glucocorticoid. The shared care of oral prednisolone should include a written tapering plan and monitoring of complications of long-term glucocorticoid therapy.
EducationIndividuals diagnosed with GCA should be provided with written educational material about aspects of their care and have the opportunity to be educated by a health professional within 1 month of diagnosis and receive updates as required.
Multi-disciplinary teamThere should be defined local and regional MDT that formally discusses complex cases.
DomainStatement of recommendation
Clinical pathwaysThere should be an established pathway for the investigation and care of individuals with suspected GCA, which is agreed across primary and secondary care, with clear entry and exit points, and clear time frames for initiation of investigations and glucocorticoid treatment.
Patient accessPatients with suspected new or relapsing disease should always be able to access a clinician with appropriate expertise or a helpline, leading to a preliminary management plan within 24 hours of patient access and a definitive review within 2 working days.
Rheumatology & Ophthalmology provisionThere should be nominated leads in rheumatology and ophthalmology with an interest in GCA who coordinate care, collaborate with the other specialities in the hospital, and run dedicated CTD/Vasculitis clinics for follow-up of patients with GCA.
Ultrasonography provisionDiagnostic ultrasonography for GCA should be adequately resourced with high-quality equipment and cross-cover to ensure that it is not dependent on a single machine or operator. Diagnostic ultrasonography for GCA should be performed within 7 days of starting prednisolone and the images should be reported using validated definitions and stored in the medical records.
Temporal artery biopsyTemporal artery biopsy provision should be adequately resourced and should not be dependent on a single surgeon. The biopsy should be of an adequate size, harvested within 4 weeks of starting prednisolone and reported in a standardised manner.
PET scan provisionPET scan for large vessel vasculitis should be done within 7 days of the request and reported by an experienced radiologist.
Glucocorticoid treatmentThere should be a provision and protocol for intravenous glucocorticoid. The shared care of oral prednisolone should include a written tapering plan and monitoring of complications of long-term glucocorticoid therapy.
EducationIndividuals diagnosed with GCA should be provided with written educational material about aspects of their care and have the opportunity to be educated by a health professional within 1 month of diagnosis and receive updates as required.
Multi-disciplinary teamThere should be defined local and regional MDT that formally discusses complex cases.
Conclusion

By devising specific quality metrics in addition to the recommendation statements above, it is envisaged these standards can be easily used as an audit tool to identify gaps and development needs in GCA services.

Disclosure

F.L. Coath: None. M. Bukhari: None. G. Ducker: None. B. Griffiths: None. S. Hamdulay: None. M. Hingorani: None. C. Horsbrugh: None. C. Jones: None. P. Lanyon: None. S. Mackie: None. S. Mollan: None. J. Mooney: None. J. Nair: None. E. O’Sullivan: None. A. Patil: None. J. Robson: None. V. Saravanan: None. M. Whitlock: None. C. Mukhtyar: None.

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