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Improving Outcomes for Patients with ANCA Associated Vasculitis
[Thesis]. Manchester, UK: The University of Manchester; 2017.
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Abstract
Background: ANCA Associated Vasculitis (AAV) is a relatively rare autoimmune condition with the potential to cause life-threatening organ inflammation and failure. Due to the relative rarity, and the heterogenous way in which the disease may present, delay to diagnosis is common. Although initial immunosuppressive treatment is usually effective at controlling disease, morbidity associated with treatment is high and disease relapses frequent, necessitating further immunosuppression exposure.Aims and Objectives: This body of work therefore seeks to address 2 of the main challenges faced by the AAV population; 1) identifying factors that may contribute to a delay to diagnosis and disease recognition 2) reducing morbidity associated with the disease and the treatment.Methods: Patient pathways, knowledge and uptake of protective therapy were explored through a national patient report study. Patient care guidelines to assist with morbidity prevention were informed through Delphi consensus methodology and comprehensive literature review. The development of software to support implementation of a rigorous systematic approach to the assessment of the vasculitis patients was achieved through collaboration with information technology, business development and system architecture and design experts.Results: Patient presentation including symptoms, initial mis-diagnosis and eventual diagnosis appear to influence time to diagnosis. There is substantial delay from symptom onset to diagnosis demonstrating the need for increased awareness and education. Equally patient awareness of treatment related morbidity is low with variable uptake of protective therapy.A Delphi study has produced consensus on which guidelines can be based to address some of these inadequacies. A software programme: “Vasculitis Care Optimisation Tool (VasCOT)”, has been designed to support implementation of these guidelines.Discussion: The various approaches used in this body of work have so far allowed evaluation of areas where patient care needs to be improved. This in part will be addressed through the publication of national vasculitis care guidelines, informed by this work and the ongoing development of VasCOT.