Rheumatoid Arthritis News interviewed Dr. Ara Dikranian, a rheumatologist at the Cabrillo Center for Rheumatic Disease in El Cajon, California, about his experience in talking with rheumatoid arthritis (RA) patients concerning intimacy and relationships.
An article on this interview, going into further detail about the doctor-patient relationship and noting a new online resource — called the Arthritis.com — that may be of help to people with chronic diseases looking for guidance regarding their sex life, family planning concerns, and intimate relationships, can be found here.
Below is the full interview with Dr. Dikranian:
Q: At the ACR Meeting, you noted that survey results showed a majority of RA patients (53%) valued talking openly with their healthcare providers (HCPs) and considered it important to quality care, but a greater majority (61%) were uncomfortable with raising “concerns or fears.” Why does this barrier exist, and how important is overcoming it to disease management for RA patients?
Dikranian: We know that, at times, patients may feel uncomfortable to really say how they feel. In fact, the RA NarRAtive surveys showed that, of surveyed patients who currently see an HCP to manage their RA, about 1 in 5 worry that if they ask too many questions, their HCP will see them as a difficult patient and it will affect the quality of their care. The data also suggest that there is a disconnect between patient self-reported treatment satisfaction and status of disease, which can impact their RA management.
One of the reasons we’ve seen these barriers exist is gaps in communication. I’ve found that physicians are likely discussing both setting goals and establishing disease management plans with their patients, but patients may not be aware due to differences in terminology or language. These potential communication gaps not only validate the need for a joint commitment to improve dialogue, but also the need to address terminology and how we can ensure patients and physicians better understand one another.
Q: Those survey patients who said they did speak openly with their HCP talked largely of non-intimate life quality issues, like work, joining in activities, and long-term goals (93%), or about issues related to treatment (86%). Relationship and intimacy didn’t seem to be part of the conversation, yet they’re incredibly important life quality issues for adults. Why is this such a “taboo” topic between doctors and their patients?
Dikranian: Relationship and intimacy issues and insecurities can be universal challenges for everyone, no matter who they are. From my experience, 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.
Q: How difficult is it, in your opinion, for an RA patient to openly talk about problems, especially at an intimate level with a partner? Is there a time that a HCP should initiate such a conversation, if a patient is avoiding one? How does a doctor, or a patient, know when — or how — to start such a conversation?
Dikranian: 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. If RA symptoms are inhibiting a relationship, I encourage people living with RA to talk to a professional to figure out the best way to manage the challenges that come with a chronic condition, like RA. 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.
I also try to ask my patients proactive questions about their lives to get the conversation started. For example, from time to time I may ask a general question such as, “Many of my other patients have come to me with concerns about relationship and intimacy challenges. Has this happened to you too?” Another tip is checking a patient intake form to see if a patient checked a box regarding sexual or intimacy challenges, as this can be used as a starting point to initiate a conversation.
Q: What are biggest concerns RA patients voice to you regarding intimacy? As a practicing rheumatologist, what advice do you usually give to your patients struggling with intimacy issues?
Dikranian: 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.
For people with RA who are struggling with intimacy challenges, I encourage them 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.
Q: What advice do you have for other HCPs who might be in a situation where a patient asks for help or advice regarding intimacy in a relationship?
Dikranian: I encourage all healthcare providers to be open to speaking with their patients about relationship, intimacy and family planning challenges. These factors are a part of overall quality of life for people with RA and should be addressed as part of managing their overall wellbeing.
We should recognize that many of these conversations may take more time than available during an office visit, so enlisting the help of others in this endeavor becomes essential.
Q: What are your hopes for the Arthritis.com initiative, in terms of helping RA patients to more openly address intimacy, relationship issues, and concerns like pregnancy or parenting, so as to improve the quality of their personal lives?
Dikranian: From my experience, I believe that there is a lack of resources on these topics, and we need to do a better job of shedding light on lifestyle challenges while living with a chronic condition. 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.