Pulmonary arterial hypertension (PAH) is characterized by progressive limitations
in physical activity and health-related quality of life (HRQoL). HRQoL deficits
may extend beyond the traditional domains of physical activity, psychological
health, and emotional wellbeing to sexual health and function. Sexual HRQoL has
not been studied in PAH, nor has the impact of PAH therapies themselves on
sexual health and intimacy. In this initial investigation, we sought to explore
HRQoL among women diagnosed with PAH and to determine if PAH treatment type
(intravenous or subcutaneous prostanoids versus oral medications) was associated
with levels of self-reported HRQoL assessed by validated measures for
PAH-specific, general, and sexual HRQoL. We administered the emPHasis-10, Short
Form (SF)-36, Female Sexual Dysfunction Scale-Revised (FSDS-R), and the Arizona
Sexual Experience Scale (ASEX) to 35 women with self-reported World Health
Organization Group 1 PAH at the 2016 Pulmonary Hypertension Association
International Conference and Scientific Sessions. HRQoL instruments demonstrated
excellent internal reliability. Women with PAH had high levels of sexual
distress captured with the FSDS-R scale. The FSDS-R (but not ASEX) was
significantly correlated to emPHasis-10 (r = 0.64,
p < 0.01) and most SF-36 domains
(r = − 0.36 to − 0.64, p < 0.05).
Participants treated with intravenous or subcutaneous prostanoids had higher
(worse) FSDS-R scores than those on oral therapies while ASEX, emPHasis-10, and
SF-36 scores were similar across treatment types. Sexual HRQoL may impact
overall quality of life in PAH and specific assessment of sexual health and
functioning within intimate relationships may detect deficits in wellbeing not
addressed by established HRQoL metrics. Further study to address all aspects of
HRQoL in PAH is required.