PAH Treatment Adherence and Quality of Life: Reducing Pill Burden

In "PAH Treatment Adherence and Quality of Life: Reducing Pill Burden," the experts examine why patients stop or skip therapy and what clinicians can do about it.

Dr. McLaughlin asks Dr. Vaidya what most commonly drives nonadherence. Dr. Vaidya cites side effects and tolerability, patient anxiety about what they may experience, and a lack of tools to manage those effects. Regimen burden also matters, since therapies range from once daily to four times daily, once every three weeks, and continuous infusion, and many patients take a combination. She has been humbled by assuming a preference, because a patient she expected to choose an inhaled therapy preferred a twice-daily pill given a hectic life, so she now asks openly what would fit better.

Specialty pharmacy partners help by visiting homes, teaching, and flagging refill gaps, such as one agent that has not been refilled. Dr. Vaidya acknowledges that taking so many medicines is hard and encourages receptive, non-punitive conversations. Dr. McLaughlin shares that her nurse recently flagged a patient whose last fill was in May.

Dr. Kim notes that patients who are not taking their medication cannot benefit and that patients stay on therapy when they feel better. Continuous infusion has high adherence despite a tunneled catheter and difficult side effects. Dr. Channick adds that fewer daily doses help, citing that half of patients on three-times-daily sildenafil skip the middle dose, and that once-daily fixed-dose combinations should help.

Dr. McLaughlin turns to quality of life, which is absent from risk scores. Dr. Kim notes that regulators emphasize how patients feel, function, and survive, yet patient-reported outcomes have taken a back seat in this field even though disease-specific and generic validated instruments exist. When a low-risk patient still has problems, clinicians should explore pill burden and comorbidities, although trials do not formally measure this regularly.

In "PAH's Evolving Landscape: Pipeline Therapies, Diagnostic Gaps, and Older Patients," the panel looks to the pipeline and to how the typical referred patient has changed.