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.

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.

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

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 language	English
Journal	Blood
Volume	122
Issue number	21
Publication status	Published - 2013

Keywords

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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H.L., G., A.C., D., R.M., E., K., C., J.-J., K., S., S., S., Z., P., B., S., C., H.C., S., F., S., A.K., F., D., H., H.L., P., M., G., F., S., K., D., T., L., D., R., ... R.A., M. (2013). Sexuality challenges, intimacy, and MPN symptom burden: An analysis by the MPN quality of life international study group (MPN-QOL ISG). Blood, 122(21). http://www.embase.com/search/results?subaction=viewrecord&from=export&id=L71264070 http://bloodjournal.hematologylibrary.org/content/122/21/4088.abstract?sid=5e850300-5dac-433a-b5dd-c3251e4ec5b4

@article{407b3c2e395043eab29550cfe64727b7,

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

abstract = "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",

keywords = "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",

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

year = "2013",

language = "English",

volume = "122",

journal = "Blood",

issn = "0006-4971",

publisher = "American Society of Hematology",

number = "21",

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H.L., G, A.C., D, R.M., E, K., C, J.-J., K, S., S, S., Z, P., B, S., C, H.C., S, F., S, A.K., F, D., H, H.L., P, M., G, F., S, K., D, T., L, D., R, A., R, F., B, G., E, J.-C., I, L., R, J.-Y., C, C.N., H, D.H., R, P.J., M, N.I., M, C., B, F., C, P., J, T., B, G., B, A.M., V, F., P, B., A, M., F, A., R, J., S, G., B, Z., X, Z., X, X., S, J., X, P., Z, R.P., G & R.A., M 2013, 'Sexuality challenges, intimacy, and MPN symptom burden: An analysis by the MPN quality of life international study group (MPN-QOL ISG)', Blood, vol. 122, no. 21. <http://www.embase.com/search/results?subaction=viewrecord&from=export&id=L71264070 http://bloodjournal.hematologylibrary.org/content/122/21/4088.abstract?sid=5e850300-5dac-433a-b5dd-c3251e4ec5b4>

TY - JOUR

T1 - Sexuality challenges, intimacy, and MPN symptom burden: An analysis by the MPN quality of life international study group (MPN-QOL ISG)

AU - H.L., Geyer

AU - A.C., Dueck

AU - R.M., Emanuel

AU - K., Cannon

AU - J.-J., Kiladjian

AU - S., Slot

AU - S., Zweegman

AU - P., Boekhorst

AU - S., Commandeur

AU - H.C., Schouten

AU - F., Sackmann

AU - A.K., Fuentes

AU - D., Hernandez

AU - H.L., Pahl

AU - M., Griesshammer

AU - F., Stegelmann

AU - K., Döhner

AU - T., Lehmann

AU - D., Ranta

AU - A., Reiter

AU - F., Boyer

AU - G., Etienne

AU - J.-C., Ianotto

AU - L., Roy

AU - J.-Y., Cahn

AU - C.N., Harrison

AU - D.H., Radia

AU - P.J., Muxi

AU - N.I., Maldonado

AU - C., Besses

AU - F., Cervantes

AU - P., Johansson

AU - T., Barbui

AU - G., Barosi

AU - A.M., Vannucchi

AU - F., Passamonti

AU - B., Andreasson

AU - M., Ferrari

AU - A., Rambaldi

AU - J., Samuelsson

AU - G., Birgegard

AU - Z., Xiao

AU - Z., Xu

AU - X., Sun

AU - J., Xu

AU - P., Zhang

AU - R.P., Gale

AU - R.A., Mesa

PY - 2013

Y1 - 2013

N2 - 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

AB - 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

KW - abdominal pain

KW - algorithm

KW - anemia

KW - bleeding

KW - coughing

KW - erythrocyte

KW - female

KW - gender

KW - hematology

KW - human

KW - insomnia

KW - intimacy

KW - language

KW - leukopenia

KW - model

KW - mood

KW - multivariate analysis

KW - myelofibrosis

KW - night sweat

KW - patient

KW - polycythemia vera

KW - population

KW - prevalence

KW - quality of life

KW - sexuality

KW - society

KW - thrombocythemia

KW - thrombocytopenia

KW - thrombosis

KW - transfusion

KW - univariate analysis

M3 - Article

SN - 0006-4971

VL - 122

JO - Blood

JF - Blood

IS - 21

ER -