AMSTERDAM—A variety of factors lead to delays in patients seeking medical care for rheumatoid arthritis—from the nature of symptoms to coping tendencies—requiring more awareness from physicians when managing patients, researchers said at EULAR: the Annual European Congress of Rheumatology.
Explore this issueSeptember 2018
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Longer delays in treatment bring about more emotional distress to patients, missed chances to ease symptoms and higher healthcare costs, underscoring the need to sort out why delays happen and try to correct these problems, said Rebecca Stack, PhD, a lecturer in psychology and research at Nottingham Trent University.
She said findings show big disparities in treatment delay exist at centers in different regions across Europe.1 For example, centers in Birmingham report 12 weeks of delay attributed to patients, whereas centers in Vienna report two weeks of delay due to patients. Centers in Stockholm report two weeks of delay attributed to appointment delays and other causes from healthcare professionals, while centers in Berlin report 10 weeks of delay for those kinds of reasons.
This, Dr. Stack said, shows there is room for improvement in getting patients treatment more quickly.
Data collected from 822 patients in the United Kingdom who were newly presenting with symptoms found that 5.7 weeks of delay were attributed to patients, seven were due to delays by the general practitioner, and 4.8 weeks were due to other delays. Fewer than 20% of the patients saw a rheumatologist within 12 weeks of symptom onset, Dr. Stack said.
Patients with a palindromic symptom onset, in which symptoms moved about or came and went, had a longer delay in treatment than those with non-palindromic symptoms. And patients with an insidious symptom emergence had a longer delay than those with acute emergence, she said.
“We know now that symptom onset is really important,” she said.
Patients try a variety of things before actually seeking professional medical help, including using ice or heat and changing their diet, she said.
“They were more likely to seek spiritual guidance than they were to actually speak to a pharmacist,” Dr. Stack said. “So we know there is potential for pharmacists to offer some interventions and to offer, perhaps, some advice to people.”
She said that better messaging with these issues in mind could help limit patient delay, “as long a they’re put into these communication messages with some sort of psychological theory behind them. … We know we need to also increase their cues to action and their self-efficacy.
Delivering messages correctly can be tricky, because they can cause unnecessary alarm, she said. “We need to be very careful about the types of messages which we deliver,” she said. “They must be carefully framed so they don’t increase anxiety among people who have hypochondriasis—general health anxiety—and increase the number of people going to see healthcare professionals with symptoms that don’t need medical intervention. So they do have to be carefully crafted.”
Why Patients Delay Care
Kristien Van der Elst, a PhD student and registered nurse at KU Leuven in Belgium, said research at her center has found psycho social factors, such as a belief that an outcome is inevitable regardless of whether a patient seeks help, play nearly as big a role in determining how long patients delay seeking treatment as the clinical factors themselves, such as swollen joint counts.
In an exploratory study of the CareRA trial, designed to determine optimal care for patients with early RA, 112 patients completed questionnaires on such things as how they perceive their disease and their coping strategies.2
Factors linked to longer delay included a strong belief in an inevitable or innocent disease cause; passive reacting, or the feeling of being totally overwhelmed by a problem situation; a limited understanding of the condition; a low number of swollen joints; and poor expectations the treatment will be able to control the disease.
In their analysis, psychosocial factors, such as illness perceptions and coping strategies, accounted for about 18% of the variability of patient delay, while clinical factors accounted for about 15%, Ms. Van der Elst said. Two-thirds of the variability in delay could not be explained by any of the factors they examined, she said.
Two patients seen at her center illustrate how psychosocial factors can play a pivotal role in delay. One woman was a general practitioner and contacted the rheumatology department after noticing her hand joints had begun to swell. When erosions on her feet were found, the woman said her feet had been painful and swollen for six months but she thought it was because of new tennis shoes.
“The causal attributions that Sophie related to her first symptoms caused the delay of at least six months in seeking help,” Ms. Van der Elst said.
In the other example, a construction worker first saw RA symptoms in his feet eight years before, then finally contacted a doctor because he was losing weight. Over the years, his arthritis had caused severe joint destruction. The error here was that he “thought he could cope” with his joint problems and “seriously misinterpreted the consequences of the symptoms.”
Being mindful of traits that can cause delay might help manage a patient once they come into the care of a rheumatologist, Ms. Van der Elst said.
“It’s likely that patients’ help-seeking behavior at symptom onset will predict how they will behave in the future,” Ms. Van der Elst said. “Therefore, analyzing the psychosocial factors that influence the patient delay could give you valuable information in how patients will deal with RA-related problems in the future, for example, how they will deal with flares.”
Thomas R. Collins is a freelance writer living in South Florida.
- Raza K, Stack R, Kumar K, et al. Delays in assessment of patients with rheumatoid arthritis: variations across Europe. Ann Rheum Dis. 2011 Oct;70(10):1822–1825.
- Verschueren P, De Cock D, Corluy L, et al. Effectiveness of methotrexate with step-down glucocorticoid remission induction (COBRA Slim) versus other intensive treatment strategies for early rheumatoid arthritis in a treat-totarget approach: 1-year results of CareRA, a randomised pragmatic open-label. Ann Rheum Dis. 2017 Mar;76(3):511–520.