Giant cell arteritis (GCA) presents in people over 50, with headaches, visual involvement and large vessel vasculitis. A 30-item GCA-specific patient reported outcome measure (GCA PRO) was developed and tested in a clinical setting to pilot its feasibility and acceptability to patients and clinicians as a communication tool.
Patients seen in rheumatology or ophthalmology departments in Bristol and Leeds completed the GCA PRO prior to their consultation. Items referred to patients’ health-related quality of life over the past 7 days. Clinicians were given a copy of patients’ responses and a summary sheet highlighting overall scores which they referred to during the consultation. After the appointment, patients and clinicians completed short answer questionnaire (SAQ) plus free-text feedback forms reporting on the experience of use of the GCA PRO within the consultation.
The GCA PRO was piloted during 16 clinic appointments. 16 patients, mean age (SD) of 74.7 (7.0), 11 (68.8%) female, 7 (43.8%) active disease and 5 (31.3%) with ocular involvement took part. Seven clinicians participated - 5 rheumatologists and 2 ophthalmologists. 87% percent of patients agreed that the GCA PRO had helped them to explain their condition; clinicians agreed that the GCA PRO had helped them to understand the patient’s condition 88% of the time (Table 1). Clinicians noted that “it was easier for the patient to convey his anxiety and feelings towards the disease and treatment” and that the GCA PRO “indirectly helped via prompting discussion of patient’s anxieties and worries”. However, they were more equivocal on its impact on decision making: “management plan was informed by symptoms, bloods and stage of illness”. Patients commented that “it helped us to plan how to manage my GCA based on my answers”, and that “the questions seemed relevant and it was helpful to me to be able to think about them before the appointment”.
The GCA-PRO was found to be an acceptable tool for use in clinic by patients and clinicians, especially in terms of explaining and understanding the patient’s condition.
Almeida, C., Guly, C., Mackie, S., Bromhead, A., Stern, S., Dures, E., …Robson, J. C. (2022). P301 Patient reported outcome measure for giant cell arteritis: Clinical testing. Rheumatology, 61(Supplement_1), Article keac133.300. https://doi.org/10.1093/rheumatology/keac133.300