Abstract
Inflammatory arthritis (IA) is term that encompasses a range of auto-immune joint diseases that can cause severe pain, joint erosion and disability. Although there is no cure for these IAs, early treatment beginning within three months of symptom onset with disease-modifying anti-rheumatic drugs can significantly improve patient outcomes (Combe et al., 2007; Dixon Woods, et al., 2005). The Wellington region in New Zealand is served by public rheumatology services situated at Hutt hospital, and by several private consultants in Wellington and Lower Hutt.
Rheumatologists see many patients with inflammatory arthritis outside the window of opportunity for best outcomes and little is known about why these delays occur. The objective of this study is to investigate why patients may have delayed patient journeys to rheumatology care and situate these causes within the context of the Wellington region and the social and cultural milieu of everyday life. A Collective Lifestyles framework was used to guide the research process (Frohlich, Corin, & Potvin, 2001), and the results are expressed within the concept of Candidacy, which models access as a process that is defined by eligibility for health care that is considered by the individual and the health service (Dixon Woods, Cavers, et al., 2006).
A mixed methods approach was used to conduct the research with an emphasis on qualitative data. Interviews with 22 patients were the main focus of the study, with supporting data derived from rheumatologist referrals data and public rheumatology attendance data. Professionals involved in rheumatology care were interviewed to provide context for the study and nine General Practitioners (GPs) were interviewed to provide perspectives on the access barriers in the patient journey to a first specialist assessment at a rheumatology service.
Patient belief that IA symptoms were an injury or overuse response and cultural beliefs about the management of painful joints prevented early help-seeking at the onset of symptoms. Social and financial resources, working hours and beliefs about the origin of the disease and appropriate treatment all affected the negotiation of barriers to care. Beliefs about the patient and cognitive bias about the cause of symptoms and knowledge of referrals processes were themes of delayed diagnosis, and GP experience was a significant predictor of early referral to a rheumatology service. Referrals data also showed that patients affected by socio-economic deprivation, Māori and Pacific peoples were at significant risk of non-attendance at a rheumatology service first specialist assessment (FSA). Waiting times to FSA were also a significant risk for non-attendance and these were related to the uneven provision of services across the region. Patients had differing experiences of treatment provided by rheumatologists that affected their treatment concordance. Better information about IA and a greater sensitivity to patient needs could reduce barriers to care, improve the early adoption of treatment protocols and enhance outcomes for patients.