Members of myPHteam with pulmonary arterial hypertension were surveyed about their experiences over the past two years during the COVID-19 pandemic. Between March 21 and April 11, 188 myPHteam members diagnosed with PAH responded to questions on:
The results of surveys with myPHteam members are always shared, so our community can learn from others’ experiences.
While PAH is a progressive condition that worsens over time, the past two years were especially challenging. Of the members of myPHteam with PAH surveyed, 49 percent reported worsening conditions. Almost one-third required an emergency room visit or hospitalization for PAH.
Among those with worsening PAH, one-third attributed the worsening of their condition during the pandemic to disruptions in medical care or treatment. Other factors members reported influencing their condition for the worse included:
Mental health issues and social isolation during lockdowns seem to have played major roles in the impact of the pandemic for those whose condition had worsened.
Members with PAH were more likely to report worsening of their condition if they were newly diagnosed during the pandemic or had more severe PAH. Those whose conditions worsened were also less likely to meet their doctor in person or use online tools to manage PAH.
Among respondents who reported their PAH improved or stayed the same during the past two years, taking a proactive role in their health care seemed to offer some protection.
Compared with those whose health worsened, people whose PAH stayed the same or improved were more likely to have:
Although only 21 percent of members surveyed missed one or more scheduled doctor appointments over the past two years, disruptions in their care team were associated with more emergency room visits and hospitalizations.
These results are in agreement with evidence that effective communication with health care providers improves outcomes in people with PAH.
Read more about how to better connect with your doctor about PAH.
Although 70 percent of those who responded to the survey were aware of telemedicine as a way to remotely access health care, 43 percent said they were unlikely to consider using it for their PAH care.
The main reason given for not utilizing telehealth for PAH was that it seemed impossible for a doctor to monitor the lung disease remotely. However, research has shown that if people with PAH provide accurate self-reporting, doctors can effectively assess risk remotely.
Read more about remote risk assessment for PAH.
Risk assessments, which are vital for monitoring disease progression and response to therapy in PAH, were disrupted by the pandemic. Most respondents (66 percent) said they normally undergo risk assessments every three or six months, while 12 percent are assessed annually. Twenty-two percent of respondents reported fewer risk assessments over the past two years.
Missing risk assessments meant that signs of progression, such as the development of right ventricular failure (also called RVF or right heart failure), might not be noticed. Changes that could indicate a need to update the treatment plan might also be missed. Essentially, risk assessments provide an estimate of the risk for death within the next year. Without regular risk assessment, people with PAH and their doctors don’t have a clear picture about how their condition is changing over time.
Read more about how risk is assessed in PAH.
The good news is that most myPHteam members surveyed — about three-fourths — have now returned to regular, in-office visits to their pulmonologist or cardiologist. In-person visits increased in 2021 compared with 2020.
The remaining 28 percent are sticking with telehealth visits or attending in-office visits less frequently than before.
About 30 percent of responding members let us know they’d experienced disruption in their PAH medication over the past two years. These included delays, changing treatments, missed doses, or discontinuation of a prescribed drug.
There was a correlation between those who’d had changes to their care team or disruptions in their appointments and those whose medication regimen was disrupted.
Unfortunately, those who experienced medication disruptions had poorer health outcomes — in terms of more hospitalizations and trips to the emergency room — for PAH or another condition.
Cost is a significant barrier for people living with PAH to receive the care they need. Only 42 percent of survey respondents feel they can afford their recommended medication, tests, and health care visits.
Learn more about how to reduce medical bills.
The majority of those who responded to the survey — 70 percent — are fully vaccinated against COVID-19 and have received at least one booster shot. Only 15 percent have had no vaccinations against COVID-19.
According to the Centers for Disease Control and Prevention (CDC), about half of Americans eligible for a COVID-19 booster vaccination had received booster shots as of May 20. Compared with the national rate, this indicates that members of myPHteam living with PAH prioritize full vaccination more highly as a high-risk population. As the CDC states, vaccination is still the safest way to prevent severe outcomes from a COVID-19 infection.
While the pandemic has been especially hard on people with PAH and others living with chronic conditions, the results of this survey show that staying actively engaged with health care leads to better outcomes. PAH was less likely to worsen for members of myPHteam who were taking action. This included sticking to a healthy diet and getting exercise, finding ways to stay connected with health care providers (such as telehealth), and keeping up with risk assessments.
On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 45,000 members come together to ask questions, give advice, and share their stories with others who understand life with PH.
How has the pandemic impacted your pulmonary hypertension? Is your care back to normal now, or is there a new normal? Share your thoughts in a comment below.