Uncertainty, steroid toxicity and healthcare experiences shape life as much as the disease itself.
A new South Australian qualitative study has placed the patient voice at the centre of giant cell arteritis care, revealing how uncertainty, treatment toxicity and healthcare interactions shape life after diagnosis as profoundly as the disease itself.
Researchers conducted in-depth, semi-structured interviews with 20 recently diagnosed patients to explore the lived experience of giant cell arteritis beyond traditional clinical endpoints.
They deliberately included individuals with varied presentations, including those with and without confirmatory biopsy or imaging, those with permanent vision loss and those significantly affected by glucocorticoid adverse effects.
Their findings have been published in Rheumatology Advances in Practice.
“This study provides unique insights into the lived experiences of individuals with recently diagnosed GCA,” the researchers, including Adelaide rheumatologist and epidemiologist Professor Catherine Hill wrote.
“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.”
Giant cell arteritis, the most common systemic vasculitis affecting adults aged over 50 years, remains a high-stakes diagnosis.
In South Australia, incidence is estimated at 5.4 per 100,000 people aged over 50 years, with rates expected to rise as populations age.
Classic cranial symptoms, including headache, jaw claudication, scalp tenderness and visual disturbance, were well recognised, but atypical and systemic presentations continued to complicate early diagnosis, the researchers noted.
Diagnostic delays remained common, particularly in non-classical disease, with potentially irreversible consequences including blindness and stroke. High-dose glucocorticoids were still the therapeutic mainstay, despite their well-documented toxicity.
While clinicians focused on visual outcomes, inflammatory markers and relapse rates, the lived experience of patients has remained comparatively underexplored, the researchers said.
“Due to disease chronicity and innumerable possible complications, the impact of GCA on an individual’s life is far more significant than that which can be appreciated during the patient–rheumatologist interaction,” they wrote.
“This research sought to advance existing qualitative literature to better understand the lived experience of this serious diagnosis.
“With improved understanding of the impact on the individual, we hope that diagnostic frameworks, treatment approaches and therapeutic relationships may be better tailored to focus on outcomes that are important to patients.”
In the phenomenological study of 20 individuals recently diagnosed with giant cell arteritis, participants were purposively sampled to reflect diverse experiences, including those with and without confirmatory diagnostic testing, those with vision loss, and those experiencing significant glucocorticoid toxicity.
Four dominant themes emerged, including living with uncertainty and fear; adapting to the interplay of disease and treatment-related symptoms; negotiating a changed illness identity; and the critical importance of healthcare interactions.
Uncertainty permeated the patient journey from the outset. Participants described prolonged diagnostic pathways, inconclusive investigations and explanations of disease that felt abstract and incomplete. Those without confirmatory biopsy or imaging found ambiguity particularly distressing. Even after diagnosis, uncertainty persisted.
Patients struggled with the inability to predict relapse, interpret ongoing symptoms or understand the long-term impact of vascular inflammation and prolonged steroid exposure. For some, fear of further visual loss dominated daily life. The absence of reliable biomarkers for disease activity amplified anxiety.
In the absence of sufficient information, many patients sought answers independently. More than half reported searching online for information about giant cell arteritis, often leaving consultations with unanswered questions. Certainty, when provided, offered profound relief. Participants consistently valued clear, tailored explanations, even when those explanations included acknowledgement of clinical uncertainty.
The physical burden of disease and treatment formed the second major theme. While many presenting symptoms improved rapidly with glucocorticoid initiation, fatigue and visual impairment often persisted. Nine of the 20 participants reported visual disturbance at diagnosis, while three experienced permanent vision loss.
Loss of a driver’s licence was described as particularly devastating, symbolising abrupt loss of independence. Several participants reported inadequate discharge planning or rehabilitation support compared with other neurological conditions.
“My life will never be the same since I lost my sight. It’s quite difficult to explain. No, my life will never be the same, but adjusting, well you have no choice, you have to adjust,” said one female respondent.
“Yeah, obviously losing my ability to do things by myself now, to drive. [Its] horrible when you can’t drive anymore. So, I guess just…things by myself. The freedom to do what I wanted to do,” said a male respondent.
Glucocorticoid toxicity was nearly universal. Weight gain, cushingoid appearance, mood disturbance, insomnia, tremor and proximal weakness were commonly reported.
Participants described profound psychosocial consequences, including embarrassment, strained relationships and, in one case, suicidal ideation in the context of neuropsychiatric side effects and vision loss.
Notably, patients struggled to disentangle symptoms attributable to active disease from those due to treatment, echoing clinicians’ own diagnostic uncertainty. Despite this, most were willing to tolerate significant toxicity because of fear of undertreatment and relapse.
“‘Yeah, it’s good that way but I do know prednisolone just masks it. Yeah. I think, what next. After prednisolone, is it going to solve the problem? I often wonder about that. Is it going to send me straight back to square one when I come off it?,” said one male patient.
The diagnosis also disrupted personal identity. Many participants had perceived themselves as healthy and independent prior to illness. The abrupt transition to chronic disease, long-term medication and frequent medical appointments altered self-perception.
Participants described feeling older, more vulnerable and less in control of their future. For some, retirement plans were disrupted. The invisibility of the disease compounded distress; friends and family often failed to grasp its seriousness, contributing to isolation and alienation.
“I just want my body back. I’ve always been healthy and fit and relatively careful of what I put in…but now things happen and I don’t feel as if I’m in control. My body is not behaving like it used to,” one female patient reported.
Across all narratives, however, the quality of healthcare interaction emerged as a decisive determinant of overall experience.
Patients who felt heard, respected and involved in shared decision-making described more positive journeys, even when disease burden was high.
Compassion, acknowledgement of uncertainty and information tailored to health literacy were repeatedly emphasised.
Having a reliable point of contact, including someone to call regarding symptom recurrence or medication side effects, provided reassurance in a condition characterised by unpredictability.
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“[My rheumatologist] sat me down for nearly two h [hours] and anything I was uncertain about, he just – he was – he explained it so well I felt quite comfortable leaving here,” said one female patient.
“They were both very compassionate and that I think when you get this diagnosis is really needed. More than any bit of information that can be given, that level of compassion, just simple things…go a long way to making you feel you’re supported,” said another female patient.
Conversely, diagnostic delay and perceived dismissal of early symptoms generated frustration and disempowerment. Several participants felt that diagnosis depended on their own self-advocacy.
Some had effectively self-diagnosed through online searches before appropriate referrals were made. Importantly, strong therapeutic relationships with rheumatologists were able to partially remediate earlier negative experiences.
“In all honesty, I don’t think doctors know enough about giant cell arteritis. Certainly, the doctors that I was going to did not know about – I mean I had all the signs and symptoms which they didn’t pick up on…lots of things that I said were dismissed,” said one female patient.
“I wasn’t impressed because I sat there for seven h and then in the end, they just sort of brushed me off as a 70-year-old neurotic lady – oh, there’s nothing wrong with you,” said another patient.
The implications for clinical practice were clear, the researchers noted. Communication training that equipped clinicians to acknowledge ambiguity while providing structured plans may mitigate the psychological toll of uncertainty.
Proactive education regarding glucocorticoid toxicity, both physical and neuropsychiatric, should become routine, and integration of multidisciplinary services, including occupational therapy, physiotherapy, vision support and psychological counselling, appeared essential but inconsistently provided.
Finally, structured referral pathways and fast-track diagnostic clinics may reduce both diagnostic delay and downstream anxiety.
“These findings resonate with a growing recognition of the importance of patient experience in the management of rheumatological disorders and highlight specific areas of unmet need in GCA care,” the researchers wrote.
As advances in vascular imaging, biomarker development and steroid-sparing therapies reshape the management landscape of giant cell arteritis, this study was a timely reminder that therapeutic innovation alone would not address the unmet needs of patients.
“This study provides unique insights into the lived experiences of individuals with recently diagnosed GCA,” the researchers concluded.
“The themes of uncertainty, managing symptom interplay, evolving illness identity and healthcare interaction highlight the multifaceted challenges faced by patients.
“Our findings emphasise the profound psychological and functional impact that GCA has on an individual’s life 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.
“Establishing streamlined clinics to optimise diagnostic certainty and ensuring a dedicated point of contact are further areas for improvement.
“Addressing these unmet needs represents a critical opportunity to improve outcomes for people living with GCA.”
