Communication Can Boost Medication Persistence in PAH

Provider instructions and perceived symptom improvement are among the top reasons people with pulmonary arterial hypertension (PAH) persist with taking their medications, according to a new survey. However, the survey also found that many patients get health care information from unreliable sources like social media and that many health care providers (HCPs) overestimate their patients’ medication adherence.¹ 

The findings, which were published in the journal Pulmonary Circulation, highlight challenges associated with “treatment persistence”—the duration from initiation to discontinuation of therapy—among patients with PAH.

Both persistent and discontinuing patients listed forgetfulness, fear of adverse effects, and high costs as their top reasons for not taking their medications as prescribed. | Image Credit: © fizkes - stock.adobe.com

Corresponding author Gabriela Gomez-Rendon, MD, MBA, of Actelion Pharmaceuticals US, and colleagues wrote that treatment persistence is particularly important in PAH because treatment can delay the progression of the debilitating, deadly disease.

“Studies show adherence to and persistence with PAH medication can be suboptimal, yet limited data are available on treatment persistence and its factors among US patients with PAH,” they wrote.

A 2022 systematic review and meta-analysis found approximately 4 in 10 patients with PAH discontinue their medications, for reasons ranging from administration frequency to costs to adverse events.²

In the new study, Gomez-Rendon and colleagues focused their attention on 134 adult patients with PAH who took selexipag (Uptravi), macitentan (Opsumit), or both, in the 12 months prior to the survey.¹ The investigators also surveyed 23 health care professionals from 23 different clinics. The surveys were conducted between 2019 and 2022.

Among patients who responded to the survey, 112 were considered to be persistent in their medication usage, whereas 22 had discontinued their medication. Eighty-three percent of patients who were persistent reported “always” taking their medication as prescribed, whereas only 45.5% of patients who discontinued said the same.

Overall, symptom improvement, feeling better, instruction from HCPs, and fear of getting sick if they did not take their medications drove patients to continue with their therapies. Both persistent and discontinuing patients listed forgetfulness, fear of side effects, and high costs as their top reasons for not taking their medications as prescribed. However, the reasons were different between the 2 groups; those who were persistent most commonly cited forgetfulness as the reason (13.4%), but the top reason for nonpersistence among people who discontinued was fear of adverse effects (36.4%).

Gomez-Rendon and colleagues said the findings underscore the importance of proactive communication from HCPs.

“Proactive discussion about side effects and their management, as well as patients’ fear of side effects, is a key intervention to support treatment persistence,” they said.

The investigators found it was not just lack of communication that complicated persistence, but also the type of communication. Greater than 95% of respondents said they received information about PAH from their HCPs, but half of respondents also said they used websites to gain information, and one-third (36.6%) said social media was a source of information. Yet, the investigators said patients who discontinued were more likely than those who were persistent to get information from websites and social media.

Another issue highlighted by the study was the apparent gap between clinicians’ perceptions of patient persistence and patients’ actual usage patterns.

“At low‐persistence sites (n = 11), HCP perception of persistence differed from actual persistence according to medication shipment rates (85.6% vs <40%, respectively),” the investigators wrote; at high‐persistence sites (n = 13), no such discrepancy existed (88.1% vs ≥80%).”

Gomez-Rendon and colleagues said further research is warranted to understand the reasons for the gap, but they suggested it may be because patients underreport missed medications to their providers, or because of communication delays between pharmacies and providers.

The investigators said they hope their study encourages physicians to seek out ways to improve communication with patients, including the use of social workers and case managers to help answer patients’ questions and help connect them with financial resources.

“In summary, our study highlights the importance of continuous patient engagement and improvement of patient-HCP communication, with education on the disease and treatment,” they wrote. “Early discussion and management of side effects is important in patients with PAH.”

References

1. Shlobin OA, Bruce G, Gomez-Rendon G, et al. Practices affEctingmacitentan and selexipag patient persistence rates utilizing pulmonary arterial hypertension clinical Site and patIentperSpecTives (PERSIST): a US qualitative analysis. Pulm Circ. 2024;14(4):e12441. doi:10.1002/pul2.12441
2. Qadus S, Naser AY, Ofori-Asenso R, Ademi Z, Al Awawdeh S, Liew D. Adherence and discontinuation of disease-specific therapies for pulmonary arterial hypertension: a systematic review and meta-analysis. Am J Cardiovasc Drugs. 2023;23(1):19-33. doi:10.1007/s40256-022-00553-6