Australian researchers say socioeconomic disadvantage can derail rheumatoid arthritis care at every stage, from delayed diagnosis to treatment access, highlighting the need for more flexible, patient-centred services.
Patients with rheumatoid arthritis are struggling to have their symptoms recognised, access timely treatment, and maintain relationships with healthcare providers because of socioeconomic disadvantage, Australian researchers say.
The South Australian study has revealed how financial hardship, low health literacy, past trauma, and fragmented healthcare can combine to create significant barriers to effective RA management, even within Australia’s publicly funded health system.
The findings, published in Rheumatology Advances in Practice, suggest that improving outcomes for disadvantaged patients will require more than access to subsidised medicines, with researchers calling for changes to primary and specialist care models.
“We found that what was happening in people’s lives (including difficult experiences from the past) shaped the care they received,” the researchers wrote.
“Some people found it hard to get doctors to take their symptoms seriously. Some struggled knowing how to navigate the health system and what they could ask for. Some struggled to build and maintain a relationship with healthcare staff.
“Getting used to living with long-term illness was also a challenge for some people.
“Through Patient Journey Mapping and reviewing the results together, links were made between low SES and these difficulties.
“We thought about these links from many different angles and came up with ideas for how doctors, hospitals and governments could try to reduce these difficulties.
“These findings help to explain why people with low SES have poorer health when they have rheumatoid arthritis. We hope that the findings will help design better health services for all people with this illness.”
Led by Dr Oscar Russell from The Queen Elizabeth Hospital and Adelaide University, the qualitative study explored the healthcare experiences of eight people with established RA who were experiencing socioeconomic disadvantage.
Participants had a median age of 58.5 years, half were women, and their average disease duration was 10.5 years. Three-quarters were unemployed or retired and almost 90% received social security benefits.
The researchers used patient journey mapping and in-depth interviews, averaging nearly 90 minutes, to investigate how participants navigated the healthcare system from their first symptoms through diagnosis, treatment and long-term disease management.
They identified six major themes, including difficulty recognising and attributing symptoms, building health literacy, maintaining relationships with healthcare professionals, managing treatment challenges, living with trauma, and adapting to chronic illness.
One of the most significant findings was that early RA symptoms were sometimes dismissed or attributed to previous injuries, manual labour, or stressful life events, potentially delaying diagnosis and treatment.
Patients themselves sometimes accepted these explanations, particularly when they had little prior knowledge of RA.
“Me with no knowledge of what rheumatoid arthritis was, how do I convince a doctor that the pain in my knees is not just normal arthritis, which is what he thinks it is?” one participant said.
The researchers found that navigating the healthcare system was particularly challenging for people unfamiliar with Australian healthcare arrangements, including some migrants who were uncertain about their right to question clinicians or advocate for themselves.
One participant described remaining silent during appointments because they feared speaking up could jeopardise their care or delay their next appointment.
Continuity of care also emerged as a major concern, with participants reporting frustration at repeatedly explaining their medical histories to different GPs and rheumatologists.
“I’m tired of retelling my story over and over again,” one participant said.
The researchers noted that frequent changes in clinicians, including rotating hospital trainees, could undermine trust and lead to important aspects of patients’ medical and social histories being overlooked.
For patients already dealing with complex health and social circumstances, repeatedly recounting their experiences added to the burden of managing their disease.
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Access to timely treatment adjustments presented another obstacle.
Some participants described difficulties obtaining rheumatology appointments when their disease remained active, resulting in delays to medication changes or the introduction of additional therapies.
Others sought interim assistance from GPs, who prescribed analgesics or prednisolone while patients waited for specialist review.
Medication costs were another concern, although community pharmacists sometimes helped patients reduce their out-of-pocket expenses by explaining Pharmaceutical Benefits Scheme safety net arrangements or suggesting more economical prescription quantities.
The study also highlighted the influence of traumatic experiences, including childhood abuse, racism, workplace injuries, financial abuse, and adverse healthcare encounters, on patients’ ability to engage with treatment.
These experiences could shape how patients interpreted symptoms, interacted with clinicians, and responded to the demands of chronic illness.
Importantly, the researchers found that the cumulative workload of managing RA and other health problems could discourage patients from seeking further care.
One participant described becoming reluctant to raise new symptoms because doing so would trigger additional investigations, appointments, and referrals, without necessarily delivering meaningful improvements.
The researchers suggested that this accumulation of healthcare demands could help explain why patients experiencing socioeconomic disadvantage have poorer RA outcomes despite Australia’s broad access to effective disease-modifying therapies.
They said that improving care would require clinicians and health services to recognise the competing demands on patients’ time, finances, and emotional resources.
Potential solutions included better continuity of care, improved communication between GPs and rheumatologists, trauma-informed practice, and greater attention to patients’ capacity to manage complex treatment requirements.
The researchers also raised concerns that funding arrangements favouring shorter GP consultations could disproportionately disadvantage patients with complex medical and social needs.
They suggested that changes to Medicare funding models might be needed to better support longer consultations and continuity of care for people managing chronic disease.
The researchers advocated a minimally disruptive approach to medicine, in which treatment plans account for the patient’s overall burden of illness rather than focusing exclusively on RA disease activity.
However, they acknowledged that the small, deliberately selected sample limited the transferability of the findings. The study also excluded people with undiagnosed RA and those who were not already accessing specialist services, potentially missing patients facing the greatest barriers to care.
“These findings help to explain why people with low SES have poorer health when they have rheumatoid arthritis,” the researchers wrote.
“We hope that the findings will help design better health services for all people with this illness.”
