The direct link between patients’ emotional distress and their long-term outcomes has been recognized for many years. Clinicians and patients recognize the need for psychological support in rheumatology, but support is not always available.
“Providing psychological support is part of our task under guidelines, but there is evidence that this is not happening,” said Sarah Hewlett, PhD, MA, RN, Arthritis Research UK Professor of Rheumatology Nursing at the University of the West of England in Bristol, UK. “There is quite a lot of evidence that we are not providing even a basic level of support.”
Dr. Hewlett and colleagues will explore the clinical aspects of psychological support for rheumatology patients during the ARHP session Emotional Distress: Tips to Help Your Patients from 4:30 – 6:00 pm today.
“There aren’t a lot of psychologists working with patients with rheumatic diseases, and even fewer rheumatology departments with psychologists as members of the care team,” said Susan Bartlett, PhD, a clinical psychologist and Associate Professor of Medicine at McGill University and Adjunct Associate Professor in Rheumatology at The Johns Hopkins University. “Nurses and other providers could do far more to help patients cope with emotional and psychological stress of rheumatologic disease.”
Rheumatology providers recognize the same gap between patient needs and available services.
“Our research found that rheumatology teams perceive psychological support as being an important part of care, but they also perceive what they are currently able to offer as being inadequate,” said Emma Dures, PhD, CPsychol, Senior Research Fellow at the Centre for Health and Clinical Research at the University of the West of England. “Within rheumatology, there is growing evidence for the impact of psychological interventions and a recognition that these outcomes are amenable to change. But there remains a gap from that acknowledgement to everyday practice.”
The psychological burden of rheumatologic disease ranges from low mood or depression to a broad range of distress, Dr. Hewlett said. Many patients are struggling to manage fatigue, worry, pain, and stress. They feel unable to cope with their disease effectively and are often dissatisfied with both their treatment and their outcomes.
“These are the people we can potentially help in talking with them about how to manage their rheumatologic disease in a different way,” she said. “For instance, nurses can help patients deal more effectively with common sources of stress and refer patients with more serious problems for specialist support.”
Relatively simple changes in the way rheumatologic care is delivered could make a significant difference. In-depth surveys with rheumatology patients across the UK revealed a long list of provider behaviors that help, and some behaviors that don’t help.
“One of the things we found that is not helpful is only focusing on medications and clinical outcomes and not asking the patient how they are coping with the impact of their condition in daily living,” Dr. Dures said. “The flip side is providers who validate challenging symptoms, acknowledge that fatigue is important and that, yes, it can be challenging to manage. What patients told us is helpful is to normalize the impact of their distress, making it part of the routine inquiry to ask how they are feeling and actually listening to the response.”
Similar research among health care providers found similar responses in terms of the importance of psychological support. But while many providers acknowledged the need for psychological support, few actually provided it as a matter of course.
Lack of support may stem from a lack of recognition of the psychological costs of living with a chronic, painful, and disabling disease, Dr. Bartlett said. Clinicians may be more familiar with pharmacologic interventions or lack both the training and the confidence to offer psychological support. And some patients are reluctant to talk about how they feel out of concerns they will be seen as weak or unable to cope.
“Psychological support is important to patients, and it is important to providers, too,” Dr. Hewlett said. “There is strong evidence that if patients’ psychological well-being is better, their outcomes are better and the burden on the health care system is lower. There are simple things providers could be doing in clinic to help relieve the distress.”