Your support group participation might improve your life more than you realize.

A recently published study shows that support groups improve meaningful health-related outcomes, such as self-care, pulmonary hypertension (PH) symptom management, medication adherence and understanding related medical procedures.

The study, published in the April 2021 issue of the journal Pulmonary Circulation, examined the effects of support group participation on people with PH and their caregivers.

The researchers – Paresh C. Giri, M.D.; Gizelle J. Stevens, M.D.; Jeanette Merrill-Henry R.C.P.; Udochukwu Oyoyo, M.P.H.; and Vijay P. Balasubramanian, M.D. – wanted to assess how support group participation affected quality of life outcomes measured by the EmPHasis-10 questionnaire.

Although the study showed no statistical differences in the EmPHasis-10 measures, more than 90% of participants reported improvement in the other health-related outcomes. The study is thought to be the first to show that PH support group participation is associated with improved outcomes.

The study showed support group participation improved:

  • Confidence in caring for self (88.5% of participants).
  • Understanding right heart catheterization (88.5%).
  • Understanding condition in 86.2%.
  • Managing symptoms well (83.9%).
  • Help with healing (82.7%).
  • Medication adherence (80.4%).

About the study
The investigators began their research by collecting data in the Research Room at the Pulmonary Hypertension Association (PHA) International PH Conference and Scientific Sessions in 2018. Participants completed a 10- to 15-minute online survey while an investigator was seated nearby to answer questions.

Overall, the study included 165 participants, including 130 Conference attendees in Phase I. In Phase II, the researchers surveyed 30 patients at Loma Linda University Health’s PH clinic.

About the participants
Seventy-eight percent of participants were female, 61% were Caucasian, and nearly 52% had Group 1 PH.

About 16% lived outside the United States. The rest were from the U.S. Of those living in the United States, the largest group, about 34% was from the South.

The majority of patients were on PH-specific medications, most commonly tadalafil (41.4%) and ambrisentan (31.5%).

The vast majority, 71.5%, attended support groups. Of them, about 91% said the groups helped them. The most common reasons for joining a support group were to better understand their conditions (42%) and meet people with similar conditions (32%).

Transportation issues were the most common reason for not joining a support group (44%).

Learn more about participating in PH research, or find a clinical trial.