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Sexual Function and Health-Related Quality of Life in Pulmonary Arterial Hypertension

Mary Whittenhall

Sarah Vargas

Kate Guthrie

Debasree Banerjee

B Wickham

Melissa Allahua

James Klinger

Amy Palmisciano

Corey E. Ventetuolo


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Conference: 2017 PH Professional Network Symposium

Release Date: 10.06.2017

Presentation Type: Abstracts

File Download: 2017 PHPN Abstract 1034

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Abstract presented at the 2017 PH Professional Network Symposium held in Bethesda, MD on October 5-7, 2017


To establish whether patients with pulmonary arterial hypertension (PAH) experience deficits in sexual health-related quality of life (SHRQoL) and whether there is a relationship between SHRQoL and established measures of general health-related quality of life (HRQoL) in PAH.


Sexual health and function is an important component of general HRQoL. There are no data that elucidate SHRQoL and its role as an important unmet need for patients, their partners and caregivers, and their care team. Studies in other chronic cardiopulmonary diseases suggest that patients have high rates of sexual dysfunction due to fear of dyspnea during sexual activities. Sexual dysfunction may be even more prevalent in PAH, which has the added challenges of parenteral therapies and fears of pregnancy since more than 80% of prevalent PAH patients are women. Phosphodiesterase type-5 inhibitors are commonly used to treat PAH, but are also approved for erectile dysfunction and may also directly affect sexual function. Several tools have been developed to assess general HRQoL in PAH, but no validated measures exist for evaluating SHRQoL in PAH. We hypothesized that there would be at least a moderate correlation between SHRQoL and established HRQoL measur es in PAH, and that patients on parenteral therapies would have greater deficits in SHRQoL as compared to patients on oral therapies only.


We conducted a cross-sectional study in the Research Room at the 2016 Pulmonary Hypertension Association’s (PHA) International Pulmonary Hypertension Conference in Dallas, Texas. Subjects were recruited to participate if they had a self-reported history of World Health Organization (WHO) Group 1 PAH. Four surveys (the Arizona Sexual Experience Scale [ASEX], the Female Sexual Distress Scale-Revised [FSDS-R], the Short Form [SF]-36 Health Survey, and the emPHasis-10) were administered to each participant via electronic tablets. The validated SHRQoL questionnaires (ASEX and FSDS-R) addressed a myriad of measures including sexual drive, arousal, ability to reach orgasm, and distress related to sexual function. These were then correlated with established general (SF-36) and PAH-specific (emPHasis-10) HRQoL surveys and common PAH surrogates such as functional class. The PHA Conference’s Research Room Leadership Committee and local Institutional Review Board (#408516) approved this study.


A total of 34 women with self-reported WHO Group I PAH completed quantitative surveys. The median age was 46 years (range 31 – 72); 69% (n=22) of the women who answered the question about race identified themselves as white. 48% of 29 women with complete data reported treatment with prostacyclin analogue therapies via intravenous or subcutaneous pumps. The FSDS-R and ASEX scales demonstrated excellent reliability (Cronbach’s α = 0.97 and 0.89, respectively). There were significant positive correlations between the FSDS-R total score and emPHasis-10 (Pearson’s r = 0.64, p < 0.01) and significant negative correlations between six of eight SF-36 domains (Pearson’s r = -0.36 to -0.64, p < 0.05 for all). There were no significant correlations between ASEX scores and emPHasis-10 nor SF-36 scores. Total FSDS-R scores show a trend toward discriminating patients who were treated with parenteral prostacyclin analogues (ANOVA F = 3.22, p = 0.084) in this sample, while ASEX, emPHasis-10 and SF-36 subscales did not.


Validated SHRQoL surveys perform well psychometrically in women with PAH. The FSDS-R, a tool designed to capture anxiety and distress related to impaired sexual health and function in women, was moderately correlated to general and established HRQoL measures in PAH and may have greater fidelity to detect impaired SHRQoL related to parenteral therapies than general HRQoL surveys. Future research should further elucidate SHRQoL assessment and intervention as gaps in PAH care to facilitate discussions between patients and their providers on this important but sensitive topic.