Though many patients with myeloproliferative neoplasms (MPN) feel comfortable talking to their health care providers about side effects such as fatigue or nausea, one symptom burden often goes unaddressed.
In a recent study, researchers found that 64 percent of patients have “greater sexual dysfunction compared with the healthy population,” and 43 percent of patients with MPN reported severe sexual dysfunction symptoms.
“That’s not a small number,” says Aaron Gerds, an assistant professor in Medicine (Hematology and Medical Oncology) at the Cleveland Clinic Taussig Cancer Institute.
The study gathered data from more than 1,900 patients with MPN from around the world, including 827 with essential thrombocythemia, 682 with polycythemia vera, 456 with myelofibrosis and six classified as ‘unknown status.’ Researchers measured how symptom burdens, such as sexual dysfunction, affected patients’ quality of life (QOL). The results were then compared with a healthy population that correlated in age group.
Patients were asked to rate their symptom burden regarding sexuality, which were listed as “problems with sexual desire or function” on a scale of zero (meaning no symptoms) to 10 (severe symptoms). The overall mean symptom score for sexuality was 3.6, which authors on the study said was “a moderately high symptom burden.” Further, 10.9 percent of patients rated their burden as severe (10 out of 10).
Patients with baseline thrombocytopenia and anemia tended to report more sexual symptoms.
Despite the fact that this is a common problem, Gerds said, it is not often discussed.
“I think that’s what makes this so important — people don’t really pay attention to this at all. You’re so focused on their diagnosis and what you’re going to to do for treatment,” Gerds said. “When nearly half the patients have significant sexual symptom burden, it becomes something we need to talk about.”
Also, as patients with MPN tend to have a long lifespan, prolonged sexually related symptoms can have a significant impact on their lives. The study noted that sexual symptoms have mental, physical, social and spiritual roots.
“Often for patients with cancer, it’s a heavy burden,” Gerds said. “Patients with neoplasms live longer, and that’s a long emotional burden on them.”
Further, patients with sexual dysfunction were also found to have an increased incidence of financial problems.
Though the exact relationship has yet to be pinned down, evidence suggests that symptom burden in patients with MPN often correlates with other side effects, such as fatigue and high inflammatory cytokine levels. Gerds said he hopes that the approved therapy for myelofibrosis, Jakafi (ruxolitinib) could help improve symptom burdens relating to sexuality, since the drug has so far shown to improve quality of life for patients.
Conversely, some therapies actually correlated with higher amounts of symptom burden. The study found that immunomodulators, like thalidomide, Revlimid (lenalidomide) and Pomalyst (pomalidomide), as well as the use of steroids, were all linked to an increase in sexuality symptom scores.
Gerds said that conversations between doctors and patients about sexual dysfunction should be handled and as frequent as any other doctor-patient conversation.
“It’s OK for patients to have these conversations. They’re not going to embarrass the doctor,” he said. “I would treat this no different than any other symptom burden.”
“I would treat it just like [an enlarged] spleen or fatigue — gauge the severity of the problem and look for ways to treat it. The simplest thing to do is to just ask.”