People with chronic diseases — of which rheumatoid arthritis (RA) is one — need to talk openly with their doctors about topics that might be uncomfortable, such as their relationships and intimacy, because these two aspects of life are often greatly affected by their disease.
In fact, chances of successful treatment and good outcomes rise with frank doctor-patient discussions, hard as they may be, Ara Dikranian, MD, a rheumatologist at the Cabrillo Center for Rheumatic Disease in El Cajon, California, said in an interview with Rheumatoid Arthritis News.
“I think it can be very difficult for people with RA to speak openly about relationships and intimacy, and there’s no one right time for a person with RA or a healthcare provider to bring it up,” Dikranian said.
Nevertheless, he called on both patients and professionals to “demystify the discussion” in pursuit of a common goal — the best possible treatment.
“If RA symptoms are inhibiting a relationship, I encourage people … to talk to a professional to figure out the best way to manage the challenges that come with a chronic condition, like RA,” he said. “It’s through conversations like these that I’m able to better assess how my patients’ symptoms are being managed and if a tweak to their care plan may be required.”
Perspectives on RA treatment, management
Dikranian presented results of a questionnaire-based study (the RA NarRAtive surveys) with patients and healthcare providers — assessing their perspectives on RA treatment, management, and doctor-patient dialogue — at last year’s ACR/ARHP Annual Meeting. His talk was titled “Understanding The Importance Of A Patient’s Role In The Management Of RA: Physician- And Patient-Based Survey.”
More than 3,980 RA patients participated in the online questionnaire, of whom 1,667 (mean age, 51.1) were followed by a rheumatologist. Of these, 33 percent (556 patients) had moderate-to-severe RA, and 10 percent (159 patients) had severe RA.
Among healthcare providers (HCPs), 1,666 completed the questionnaire and reported following, on average, 92 RA patients per month. Most (90 percent) said they were satisfied with communication with their patients, but 68 percent wished talk focused more on goals and treatment.
Among patients, questionnaire results found that 53 percent thought talking openly with their doctors would improve disease management, although 61 percent also felt uncomfortable about raising certain concerns and fears.
“Relationship and intimacy issues and insecurities can be universal challenges for everyone, no matter who they are,” Dikranian said in the interview.
Common topics discussed between doctors and patients included quality of life issues, treatment outcomes, and medication preferences; other frequent topics were concerns about disease severity, and treatment side effects, cost and efficacy. Although both sides agreed they would like to change certain aspects of RA medications (severity, number of side effects, cost, and efficacy), doctors viewed RA remission as their top priority, whereas patients frequently referred to symptom reduction as a treatment goal.
Importantly, 88 percent of HCPs agreed that patients involved in treatment decisions tend to be more satisfied with their experience, and 74 percent said that non-involved patients are less likely to adhere to treatment.
These results highlighted the importance of an open dialogue, partly by showing that doctors and patients may think differently in terms of RA treatment and management.
Promoting dialogue: The Arthritis.com initiative
Indeed, engaging RA patients in a conversation about their concerns and fears may provide better and more personalized treatment, but certain topics — such as intimacy and one’s sex life — can be very hard to bring up. “RA can lead to pain, fatigue, stiffness, swelling, reduced function, vaginal dryness, and reduced libido. If these symptoms aren’t addressed, a patient may fall short of being satisfied with their disease management,” Dikranian said.
“From my experience,” he added, “people with RA may find it difficult to ask their rheumatologist about these issues for a variety of reasons, which include shyness or embarrassment, cultural norms, language difficulties, or differences in age or gender between the patient and physician.”
One way a doctor might start a conversation, he said, was in mentioning during an office visit that other patients had raised such issues, and seeing how the person responded. He also encourages patients with “intimacy challenges … to communicate openly with not only me, but also with their partners. If it’s helpful, I encourage them to bring their partner to their doctor appointments, so that their partner can hear this information directly from a healthcare professional.”
Aware that patients sometimes lack information on relationships, intimacy, and family planning, Pfizer recently partnered with experts to create Arthritis.com. On this website, RA patients and others can not only find valuable disease information, but also advice on lifestyles, dating, emotional and physical intimacy, pregnancy, and parenting.
Dikranian believes this resource is both valuable and in need of a wider audience.
“[W]e need to do a better job of shedding light on lifestyle challenges while living with a chronic condition,” Dikranian said. “Now, with the availability of some of this information on Arthritis.com, people with chronic diseases like RA have an additional source of information on these topics to help start a difficult conversation, demystify the discussion and help both patients and providers recognize the essential nature of healthy intimate relationships on the well-being and quality of life of those living with RA.”
The complete interview with Dr. Ara Dikranian can be read here.