The perspective of patients with early rheumatoid arthritis on the journey from symptom onset until referral to a rheumatologist

Abstract

Objectives Timely treatment of patients with Early Rheumatoid Arthritis (ERA) favors a beneficial disease outcome. However, individuals often delay their contact with a healthcare professional (HCP) after ERA-related symptom onset. This study investigates the patients’ perspective on the patient’s journey from RA symptom onset until referral to a specialist. Methods A subgroup of patients with ERA from the Care in ERA (CareRA) trial were retrospectively interviewed to discuss their initial ERA-related experiences preceding diagnosis, using a bespoke assessment form. The form’s first section focused on initial symptoms and patients’ help-seeking behavior. The second part probed the consulted HCPs’ actions. Additional notes derived from the patient stories were thematically analyzed. Results Among 94 patients, pain (97%), swelling (73%) and stiffness (52%), typically in multiple joints, were reported as initial ERA-symptoms. The general practitioner (GP) was generally the first contacted HCP (87%). Frequently reported reasons to visit a HCP were too intense pain (90.4%) and difficulties in performing daily activities (69%). In 44.1% of patients, the HCP suspected ERA at the first visit. Approximately 25% of patients needed >5 visits before ERA detection. GPs mainly referred patients to rheumatologists (71%). Thematic analysis uncovered that often multiple HCPs were involved in the journey to RA detection and referral. Conclusion Pain is the most commonly reported initial symptom of ERA and the main reason to visit a HCP, mostly a GP. These GPs play a pivotal role in early detection and correct referral. Furthermore, the patient’s journey seems complex with often multiple HCPs involved.

‘Lost time’. Patients with early inflammatory/rheumatoid arthritis and their experiences of delays in Primary Care

“…This has only been identified by participants detailed relational aspects of their experiences describing their persistence to have symptoms resolved. Whilst previous studies indicate patients attend GPs from four and up to ten times seeking help, before being referred (Bykerk & Emery, 2010;Diederik et al, 2019;Stack et al, 2019;The King's Fund, 2009), this study revealed how participants, who experienced symptoms for some time, reported repeat visitations to GPs seeking answers in what became a joint endeavour with family to resolve ongoing pain and incapacity.…”

“…This was despite their experiences of feeling disbelieved or dismissed by their GPs. Although personal urgency has been previously identified as a precursor to help seeking in other RA research (Bykerk & Emery, 2010;Diederik et al, 2019;Molbaek et al, 2016;Simons et al, 2017;Stack et al, 2012;Van der Linden, 2010); there has been little recognition of the impact feeling disbelieved or dismissed has on individuals attempting referral. Unlike other RA studies that have reported reluctance by participants to seek help (Kumar et al, 2010;Raciborski, 2017;Sheppard et al, 2008;Stack et al, 2019;Tiwana et al, 2015), this study indicates a key feature of delay is a lack of GP knowledge and apparent triviality assigned to participant reported symptoms.…”

“…It represents a middle ground between paternalistic approaches to health care decision-making (whereby the physician makes decisions) and informed choice approaches (whereby patients make decisions) (Charles et al, 1997(Charles et al, , 1999Elwyn et al, 1999). SDM has been assigned as an important collaborative approach to care for all adult NHS services for patients living with long-term conditions, including rheumatological conditions (Diederik et al, 2019;National Institute for Health and Clinical Excellence Guideline, 2018;Sanderson et al, 2019).…”

Delay in seeking medical help in patients with rheumatoid arthritis in India: A qualitative study

“…Delay continued even after reaching the HPs, akin to observation by De cock et al 31 Participants consulted HPs of other allied health sciences, a “culture” similar to most participants elsewhere 15,20,32,33 but a longer delay in initiation of correct treatment meant this journey was prolonged for patients in India. Lack of education of participants also seems to be contributing to decreased dissemination of disease knowledge in society.…”

Emodin alleviates arthritis pain through reducing spinal inflammation and oxidative stress

“…1 Chronic pain is the predominant problem for patients with RA, causes various physical and psychological impairments and negatively affects quality of life. 2 Up to 90.4% of RA patients visit a healthcare professional for intense pain 3 and have at least a 236% higher relative prevalence of functional disability. 4 Disease modifying antirheumatic drugs (DMARDs) are the mainstay of RA treatment.…”