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Staying Engaged With Your PAH Care: Read Our Survey Results

Updated on December 27, 2022
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Kelly Crumrin

  • Nearly half of the myPHteam members who responded to our survey reported a worsening of their pulmonary arterial hypertension (PAH) during the first two years of the COVID-19 pandemic.
  • Those who stayed in touch with health care providers, received regular risk assessments, and stuck with PAH medication were less likely to have emergency room visits.
  • Members whose PAH improved or stayed the same were more likely to have taken a proactive role in their health care.

The myPHteam research team surveyed members with pulmonary arterial hypertension about their experiences during the COVID-19 pandemic. Between March 21 and April 11, 2022, 188 myPHteam members diagnosed with PAH responded to questions about:

  • Whether their condition had changed (gotten better, worse, or stayed the same)
  • Disruptions in medical appointments and risk assessments
  • Disruptions in medications
  • Specific challenges to accessing care or treatment during the pandemic
This article presents the survey results, so people with PAH can learn from the experiences of the myPHteam community. (Percentages may not total 100 because of rounding.)

The State of PAH During the COVID-19 Pandemic

While PAH is a progressive condition that worsens over time, the first two years of the COVID-19 pandemic were especially challenging. Of the members of myPHteam with PAH surveyed, 49 percent reported that their PAH got worse. Almost one-third of those surveyed said that they 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 included:

  • Fatigue — 72 percent
  • Stress or anxiety — 59 percent
  • Depression — 45 percent
  • Financial or job-related concerns — 20 percent
  • Not being able to see friends or family members — 17 percent
  • COVID-19 infection — 14 percent

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.

Factors in Better PAH Health

Among respondents who reported their PAH improved or stayed the same, taking a proactive role in their health care seemed to help.

Compared with those whose health worsened, people whose PAH stayed the same or improved were more likely to have:

  • Kept a healthy diet
  • Met with their doctor regularly
  • Received regular risk assessments
  • Exercised
  • Started or stayed on PAH medication

Some of the steps associated with maintaining a baseline — or even improved — health during the pandemic, like exercising and eating a healthy diet, may also improve your quality of life by helping you manage PAH symptoms.

Disruption of Medical Care During the COVID-19 Pandemic

About 21 percent of members surveyed said they’d missed one or more of their scheduled doctor appointments during the first two years of the pandemic. Some members experienced care team disruptions, which the survey defined as switching to a different health care provider during the two-year period.

People who switched health care providers had more emergency room visits, for both PAH and non-PAH health concerns, compared to people who didn’t switch health care providers during this time.

These results support the idea that effective, consistent communication with health care providers can help improve outcomes for people with PAH.

Read more about how to work with your doctor to get what you need for PAH.

Using Telehealth

About 70 percent of people who responded to the survey said they were aware of telemedicine as a way to remotely access health care for PAH. However, 43 percent said they were unlikely to consider using telehealth for their PAH care.

The main reason given for avoiding telehealth for PAH was that it seemed impossible for a doctor to monitor lung disease remotely. However, research has shown that if people with PAH provide accurate self-reporting to their health care team, doctors can effectively assess PAH risk remotely.

Read more about remote risk assessment for PAH.

Frequency of PAH Risk Assessments

Risk assessments, which are vital for monitoring disease progression and response to therapy in PAH, were affected by the pandemic. Most survey 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 undergoing fewer risk assessments during the survey time frame.

Missing risk assessments means doctors may not notice signs of PAH progression, such as the development of right ventricular failure (also called RVF or right heart failure). Changes in the status of your PAH, which require updated treatment plans, can also be missed.

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 the tests used to assess risk in PAH.

Medical Care During the COVID-19 Pandemic

The good news is that most myPHteam members surveyed — about three-fourths — had returned to regular, in-office visits with their pulmonologist or cardiologist by April 2022. In-person visits also increased in 2021 compared with 2020.

The 28 percent of people who did not return to regular, in-office doctor visits either opted for telehealth consultations or attended in-office visits less frequently than before.

Disruptions to Medications During the COVID-19 Pandemic

About 30 percent of responding members said they’d experienced disruption in their PAH medication during the survey period. A disruption to medication included delays, changing treatments, missed doses, and 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.

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 of PAH Care

Cost is a significant barrier for people living with PAH to receive the care they need. Only 42 percent of survey respondents felt they could afford their recommended medication, tests, and health care visits.

Read more about how to reduce medical bills.

COVID-19 Vaccination and myPHteam Members

The majority of those who responded to the survey — 70 percent — said they were fully vaccinated against COVID-19 and had received at least one booster shot. About 15 percent said they’d 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, 2022. Compared with the national rate, our survey indicates that members of myPHteam living with PAH were prioritizing full vaccination more highly as a high-risk population. The CDC still recommends vaccination as the safest way to prevent severe health outcomes from a COVID-19 infection.

What Do These Results Show?

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 your health care can lead to better outcomes. PAH was less likely to worsen for members of myPHteam who took 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.

Find Your Community

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 48,000 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 arterial hypertension? Is your care back to normal now, or is there a new normal? Share your thoughts in a comment below or by posting on the Activities page.

    All updates must be accompanied by text or a picture.
    Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
    Kelly Crumrin is a senior editor at MyHealthTeam and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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