Understanding the patient experience of newly diagnosed giant cell arteritis

The impact of GCA and its treatment on an individual's life is poorly characterised. This research sought to advance existing qualitative literature to tailor better diagnostic frameworks, treatment approaches and therapeutic relationships that focus on outcomes that are important to patients.

A qualitative study using phenomenology was undertaken. Purposive sampling selected recently diagnosed participants with varied experiences, including those with and without a confirmatory diagnostic test, vision loss, prednisolone adverse effects and psychosocial impact. Semi-structured interviews were conducted until saturation. Themes emerged through data interpretation, bringing together common experiences and their variant manifestations to elucidate the lived experience of GCA.

Of 34 individuals invited, 20 agreed to participate; 12 (60%) were female, median age at diagnosis 68 years (range 58-86) and mean time since diagnosis 15.7 months (range 1-45). Four main themes emerged: living with uncertainty and fear, change in self-perception and loss of autonomy, adapting to physical symptoms and the critical importance of the healthcare interaction.

This study provides unique insights into the lived experiences of individuals with recently diagnosed GCA. Our findings emphasise the profound psychological and functional impact of GCA and recognise the critical importance of patient experience on overall well-being. These insights demand we move towards a patient-centred model of care that goes beyond disease control, prioritising clear communication, tailored patient education, support networks and integrated service provision. Addressing these unmet needs represents a critical opportunity to improve outcomes that are important to people living with GCA.