Sexuality challenges, intimacy, and MPN symptom burden: An analysis by the MPN quality of life international study group (MPN-QOL ISG)

Geyer H.L., Dueck A.C., Emanuel R.M., Cannon K., Kiladjian J.-J., Slot S., Zweegman S., Boekhorst P., Commandeur S., Schouten H.C., Sackmann F., Fuentes A.K., Hernandez D., Pahl H.L., Griesshammer M., Stegelmann F., Döhner K., Lehmann T., Ranta D., Reiter A.Boyer F., Etienne G., Ianotto J.-C., Roy L., Cahn J.-Y., Harrison C.N., Radia D.H., Muxi P.J., Maldonado N.I., Besses C., Cervantes F., Johansson P., Barbui T., Barosi G., Vannucchi A.M., Passamonti F., Andreasson B., Ferrari M., Rambaldi A., Samuelsson J., Birgegard G., Xiao Z., Xu Z., Sun X., Xu J., Zhang P., Gale R.P., Mesa R.A.

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Background We have previously reported on the high prevalence and severity of challenges with intimacy and sexuality amongst a large international cohort of MPN patients (Emanuel JCO 2012). We sought to further analyze the relationships between issues of intimacy (sexual desire and function), their relationships to MPN disease features, individual MPN symptom prevalence and severity, language, and overall quality of life. Methods Data was collected among an international cohort of patients with MPNs. Subjects completed the BFI, MPN-SAF, and EORTC QLQ-C30 instruments. Surveyed symptoms on the MPN-SAF included the patient's perceptions of common MPN-related symptoms and overall quality of life (QOL) on a 0 (absent) to 10 (worst imaginable) scale. Specifically, the MPN-SAF sexuality item asked about "problems with sexual desire or function". Total symptom score (TSS) was computed based on 10 symptom items using the published scoring algorithm on a 0 (all reported symptoms absent) to 100 (all reported symptoms worst imaginable) scale. Pairwise associations between the MPN-SAF sexuality item and continuous and categorical covariates were investigated using Pearson correlations and analysis of variance/t-tests, respectively. Multivariate regression models were used to investigate impact of groups of covariates on the sexuality item with the final multivariate model selected using forward regression. Demographics A total of 1908 MPN patients (essential thrombocythemia=799, polycythemia vera=671, myelofibrosis=432, missing=6) completed the sexuality item. Participants were of typical age (median=60, range 15-94) and gender (female=53%). Overall, 1218 subjects described sexuality related complaints (score >0) with an overall mean symptom score of 3.5 (median=2.0, SD=3.7, range 0-10); 725/1908 (38%) patients had severe sexuality related complaints (score >4). Univariate Analysis Among the QLQ-C30 functioning scales, all domains had similar statistically significant correlations (r=-.26 to -.32, all p
Original languageEnglish
Issue number21
Publication statusPublished - 2013


  • abdominal pain
  • algorithm
  • anemia
  • bleeding
  • coughing
  • erythrocyte
  • female
  • gender
  • hematology
  • human
  • insomnia
  • intimacy
  • language
  • leukopenia
  • model
  • mood
  • multivariate analysis
  • myelofibrosis
  • night sweat
  • patient
  • polycythemia vera
  • population
  • prevalence
  • quality of life
  • sexuality
  • society
  • thrombocythemia
  • thrombocytopenia
  • thrombosis
  • transfusion
  • univariate analysis

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