Patients with MPNs face unique challenges with depression and sexual intimacy. Sandra Allen-Bard, BSN, MSN, AOCNP, ANCC, discusses a recent study conducted to better understand these issues.
Sexual health challenges are common among many patients with cancer and survivors. However, these issues with intimacy often fly under the radar because health care practitioners are typically concerned with disease control and other emerging symptoms.
As a leukemia nurse practitioner at Weill Cornell Medical College and New York-Presbyterian Hospital, Sandra Allen-Bard, BSN, MSN, AOCNP, ANCC, understands these unmet needs, especially among patients diagnosed with myeloproliferative neoplasms (MPNs).
Why ddi you want to study intimacy in patients with MPNs?
What did you find in this data?
In an interview with CURE, she discussed a recent study she conducted that examined sexuality and depression in patients with MPNs.I think it's something that a lot of health care practitioners don't address with patients. Quality of life issues are kind of looked upon like symptoms, there are scores are out there and there are different ways to measure things. Yet, as health care practitioners, we never ask about sexuality or intimacy with the patients unless they bring it up to us. So, I felt that it was a needed topic to make nurses aware of that subject. I just touched upon it a little bit and we just looked at some of the Cornell data prescribing different medications to help that. I think it can be broadened throughout the whole oncology spectrum. At Cornell, our program involves MPNs, so I felt that would be a good place to start. There has been only one study in Sweden looking at intimacy and sexuality in patients with MPN that compared them to the regular control population. It's been very underrated.
Patients with MPNs have a lot of depression. They need transfusions and have body image issues — in the sense of not feeling well. Our clinical data showed that erectile dysfunction is something that is easily treatable, and that men are more apt to talk to us about it than women are with their symptoms. We usually would refer them to urology for erectile dysfunction, although we did have a small population — about 6 to 8 percent — who have been put on drugs such as Viagra or Cialis. With women, we haven't even touched upon what they are going through with vaginal dryness and body issues.
We prescribe antidepressants a little more; about 25 percent of our patients with the disease have been on antidepressants. We, as practitioners, are a little more comfortable prescribing those than Viagra. The data is interesting.
We also looked at transfusion-dependent patients. They obviously have a lower quality of life and a much less desire to have any intimacy. That was also looked upon with the other clinical trial.
What is it about these patients that brings about depression and body image issues?
Age is another factor. Older patients don't want to talk about it. They don't really care too much about that. So, the younger patient population — those in their 40s and 50s — is something we should focus on. If you have a patient with an enlarged spleen, they have this big belly and they are also suffering from a wasting syndrome (cachexia) that makes them very thin-looking.
Also, they have a lot of symptoms such as night sweats, itching and fatigue. I think this accounts for a lot of quality of life issues and just not feeling well.
Body image, again, is something that can lead to depression. It's not just having the desire to do anything or get up in the morning. They feel they're so fatigued that they can't get out of bed. Some of the medications that we use, such as interferon, has a known side effect of depression. We have to use that cautiously in the patients because if they have a history of depression we can't use it.
Are there ways for patients to deal with depression, aside from taking drugs?
If they're profoundly anemic and they get a blood transfusion, they think that helps them feel a little better, so they have the capability of improving their quality of life. Jakafi (ruxolitinib), which has been FDA-approved for this patient population, is making the patients feel much better. They have increased appetites and feel better overall. So, I think we're making a little bit of headway. I'm a big proponent of exercise. When you talk to patients and they're like, "I'm so fatigued and I can't do any exercise." I try to tell them, "If you can just do a little bit at a time, just extend on that or get a trainer or physical therapist who can come to your home, just to get you activated and motivated, I think that helps." It helps improve quality of life and muscle toning.
Regarding supplements, we kind of shy away from trying to tell them not to take too many. Although, a lot of patients ask, "Is there anything I can eat? Is there anything I can take?" We do use good nutritionists at Cornell that the patients could meet with and try to see if there are different types of foods that make them feel better, or even just eating a healthier diet.
Support groups may help. There are many websites and chat rooms for patients with MPNs now. I have some patients who are very anxious over the disease. They may be 50 years old and now going into these chat rooms and they're reading all kinds of stuff or talking to people. It can get them more anxious, so I think it's the personality of patients. I try to connect patients where I feel that it's a good fit within my practice that they could become pals in the sense of not feeling as crazy as they think they are by talking to another patient who may be experiencing the same thing.
What do you hope people take away from this study?
Chronic diseases can make people very anxious because they feel well enough, they look pretty well compared to patients with acute leukemia or other ill patients, but these patients have to realize that this is for the rest of their lives. It can really make people anxious and depressed. I hope this will help nurses get this information out there and maybe they can be advocates for the patients and discuss it with them.
I always find that patients say they're well to the physician, but when the physician leaves the patient becomes all chatty with me about what's wrong and how they're really feeling. If you ask the right question, you're going to hear the answer you want to hear. So, if it's "How are you doing today?" they're going to say "fine." But if it's "Are you having any night sweats or itching?" then it makes them aware of something possibly related to their disease.
If we can help patients in any way improve their quality of life or intimacy, then I've made a statement.