The role of sexuality symptoms in myeloproliferative neoplasm symptom burden and quality of life: An analysis by the MPN QOL International Study Group

Abstract

BACKGROUND:Patients with myeloproliferative neoplasms (MPNs) including polycythemia vera, essential thrombocythemia, and myelofibrosis, are faced with oppressive symptom profiles that compromise daily functioning and quality of life. Among these symptoms, sexuality-related symptoms have emerged as particularly prominent and largely unaddressed. In the current study, the authors evaluated how sexuality symptoms from MPN relate to other patient characteristics, disease features, treatments, and symptoms. METHODS: A total of 1971 patients with MPN (827 with essential thrombocythemia, 682 with polycythemia vera, 456 with myelofibrosis, and 6 classified as other) were prospectively evaluated and patient responses to the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ C30) were collected, along with information regarding individual disease characteristics and laboratory data. Sexuality scores were compared with an age-matched, healthy control population. RESULTS: Overall, patients with MPN were found to have greater sexual dysfunction compared with the healthy population (MPN-SAF score of 3.6 vs 2.0; P<.001), with 64% of patients with MPN describing some degree of sexual dysfunction and 43% experiencing severe symptoms. The presence of sexual symptoms correlated closely with all domains of patient functionality (physical, social, cognitive, emotional, and role functioning) and were associated with a reduced quality of life. Sexual problems also were found to be associated with other MPN symptoms, particularly depression and nocturnal and microvascular-related symptoms. Sexual dysfunction was more severe in patients aged >65 years and in those with cytopenias and transfusion requirements, and those receiving certain therapies such as immunomodulators or steroids. Conclusions:The results of the current study identify the topic of sexuality as a prominent issue for the MPN population, and this area would appear to benefit from additional investigation and management. Cancer 2016;122:1888-96.

Let's talk about sex[uality]‐related symptom burden in myeloproliferative neoplasms

“…This correlation supports the concept that sexuality‐related symptoms are largely driven by elevated levels of cytokines, similar to other symptoms experienced by patients with MPN, and as demonstrated in nonmalignant inflammatory states . In addition to cytokines, there are other clear contributors, and Geyer et al found that the mental health markers of insomnia, depression, and anxiety correlated closely with sexuality‐related symptoms . Individual treatments for MPN, in particular side effects, also may have a negative impact on sexuality‐related symptom burden, and higher scores were observed in patients currently being treated with interferon (4.06 vs 3.47; P = .009), lenalidomide or other immunomodulators (5.31 vs 3.45; P <.0001), and steroids (5.36 vs 3.49; P <.0001) when compared with patients with MPNs who were not receiving these therapies .…”

“…Overall, a total of 1259 patients reported some sexuality‐related symptoms, with an average score of 3.6 on a 10‐point scale (moderately high symptom burden), and 43% acknowledged the presence of severe symptoms (a score of ≥4 on a 10‐point scale). By comparison, a group of 401 healthy volunteers reported a lower mean sexuality symptom score (2.0; P <.001), independent of age distribution . It is interesting to note that the healthy controls were from a single country (Sweden) and were comprised primarily of friends and family of hematology patients and investigators.…”

“…Because it already includes a question regarding “problems with sexual desire or function,” routine symptom assessment with the MPN‐SAF could be used as a simple tool to prompt a physician‐patient discussion of sexuality‐related symptoms. As demonstrated by Geyer et al, sexuality‐related symptoms are prevalent in patients with MPN, and are associated with an inferior QOL . Therefore, we cannot afford to “.…”

“…In the article by Geyer et al in this issue of Cancer , the authors quantify the sexuality‐related symptoms, along with quality of life (QOL), in patients with MPN, and evaluate how they correspond to disease features and treatment . This report, on behalf of the MPN QOL International Study Group, is part of a long line of work describing symptom burden in patients with MPN within the context of developing and validating measurement tools.…”

Novel Therapies for Myelofibrosis

“…The resulting clinical manifestations vary between individuals and include progressive cytopenias, extramedullary hematopoiesis resulting in splenomegaly, constitutional symptoms (i.e. fatigue, pruritus, and night sweats), psychosocial symptoms, acute leukemic transformation, and shortened life expectancy (1-3). Current MF therapies are often ineffective in controlling symptoms or altering the natural history of the disease.…”