Non-oral PAH treatment adds challenges for patients: Study
Patients say wearing pump can disrupt daily life, sleep
While non-oral treatments for pulmonary arterial hypertension (PAH) can help ease symptoms, they can also make for poorer quality of life as they add new day-to-day challenges that go beyond those posed by the disease itself, a study found.
The study, “Patients’ perspectives on the challenges associated with receiving non-oral pulmonary arterial hypertension treatment: a mixed methods study,” was published in Therapeutic Advances in Respiratory Disease.
PAH is high blood pressure in the blood vessels that supply the lungs. It occurs when small blood vessels narrow and blood can’t flow through as well as it should. Symptoms like shortness of breath often get worse during daily activities, which can hurt quality of life.
Less is known about how PAH treatment affects quality of life. A researcher from Universidad Europea de Madrid explored the challenges faced by patients on non-oral treatments, such as infusions or nebulizers, compared with those experienced by patients on oral treatments.
Comparing PAH treatment methods
The study involved 83 adults with PAH — 46 on non-oral treatments and 37 on oral treatments — who completed questionnaires about their symptoms, quality of life, perceived stress, and psychological well-being. Nine of these patients also took part in interviews and group discussions to share their personal experiences.
While taking medications by mouth is often most convenient, taking them often, using them for a long time, or combining them with other medications can make it difficult for patients to adhere to their treatment plans. Oral treatments are recommended for patients who are at low risk for poor prognosis.
There were no differences in symptom severity between patients on oral versus non-oral PAH treatment, according to the study. But those on non-oral treatments had a poorer quality of life, even after considering factors like age, mental health, and stress. More severe symptoms, perceived stress, and physical disability contributed to poorer life quality.
Interviews and group discussions revealed four main concerns over non-oral treatments: fear of starting non-oral treatment, challenges with self-management, disruptions to daily life, and changes to overall well-being.
Although patients on non-oral treatments saw their health improve, they felt anxious about switching to these medications. They found that non-oral treatments reduced their overall well-being and might point to the potential seriousness of their condition.
“I felt pretty depressed, because previously I would just get sick from hearing that I might need to wear a pump … because taking a pill is not the same as always carrying something with you, the quality of life is not the same,” one patient said.
Switching to non-oral treatments was challenging for those used to taking their medications by mouth. Some patients delayed starting non-oral treatments despite worsening health, trying to avoid the switch.
“One day the doctor introduced me to another patient, and they showed me how to wear the pump, how you carried it with you, and I felt such a strong sense of rejection that I kept taking the pills until the very last moment,” another patient said. “That was one thing that I didn’t want to accept… I didn’t want to wear a pump.”
In addition to taking time to properly operate the pumps used for infusion into the bloodstream and challenges in using nebulizers, patients struggled in emergencies, partly because finding medical help was difficult due to limited knowledge about PAH.
Non-oral treatments also interfered with daily activities, including sleep, patients said. “At first you don’t even know how to sleep, how to position yourself in bed, what to do with [the infusion pump], because you feel you are going to break it, that it’s going to fall off the bed, that it’s going to get obstructed,” one patient said.
While most study participants reported improvements in physical function after starting non-oral treatments, this “was often seen as a sign that their health was slowly worsening, which negatively impacted their subjective well-being,” the researcher wrote.
“You see that at first they give you oral treatment, and from there one day instead of one pill they give you two, or something else, three, and when they start you on the pump, then you say ‘this is not going well,'” a participant said. “From time to time they give you one more thing, they add more, and you are left to assume that it is because things are not going well.”
“The results of this study suggest that the [quality of life] and daily lives of PAH patients with relatively mild levels of symptomatology and functional disability can be affected by the challenges associated with following non-oral treatment regimens, above and beyond the effects of PAH itself,” the scientist wrote.
As a study limitation, he noted that most participants reported relatively mild symptoms and functional disability. The results should be “interpreted with caution,” the researcher wrote.
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