Measurement of the impact of giant cell arteritis and treatment with glucocorticoids on health-related quality of life

Giant cell arteritis (GCA) is the most common type of systemic vasculitis and predominantly affects women over the age of 50 years. Clinical presentation includes cranial and ocular involvement, joint and systemic features. Diagnosis is confirmed by positive temporal artery biopsy or ultrasound or large vessel vasculitis on positron emission tomography. Treatment includes high-dose glucocorticoids (GC) and immunosuppressants. Health-related quality of life (HRQoL) can be impacted by pain, fatigue, and sight loss; glucocorticoid therapy adds further physical, psychological, and social burdens. Patient-reported outcome measures (PROMs) aim to capture the impact of disease from the patient’s perspective. A range of PROMs have been used to highlight the impact of GCA. The generic 36-Item Short Form Health Survey (SF-36) has demonstrated the effectiveness of novel treatments including Tocilizumab in clinical trials, the symptom-specific Hospital Anxiety and Depression scale has demonstrated 50% of people with GCA suffer with anxiety and a third depression, and condition-specific (GCA PRO) and treatment-specific (Steroid PRO) PROMs have been developed and validated in people with GCA for clinical practice and trials. Shared decision-making (SDM) is essential in GCA management, ensuring patients understand treatment options and decisions reflect their preferences and “what matters to them.” PROMs support SDM and enhance the patient-clinician dialogue. Early evidence from use of the GCAPRO demonstrated that PROMs have helped patients explain their symptoms, providing clinicians with clearer insights into the patient’s health. There is a growing role for electronic PROMs (E-PROMs) to support patient and clinician communication and facilitate effective clinical triage. Considerations about E-PROMs include potential for digital exclusion in older patients, data governance with online apps, and clinical safety (i.e., for people reporting active disease). To fully implement E-PROMS in clinical practice and gain the maximum benefit, full integration into intuitive clinical and patient systems will be required.