Support Groups May Help Patients Better Manage Symptoms

Joining support groups — meeting people with common experiences and concerns who can provide emotional reassurance — for pulmonary hypertension (PH) helped patients manage symptoms, stick to medicines, and better understand their disease, a study reports.

Participation in a support group, however, had no impact on the general quality of life of these patients or their caregivers, the researchers found.

“This is one of the first studies to demonstrate that [attending support groups for] patients with PH improves meaningful health-related outcomes including: self-healing, management of symptoms, adherence to medication, confidence in self-care, understanding of the right heart catheterization procedure, and understanding of their condition,” the investigators wrote, though also noting that “support group participation does not improve quality of life.”

The study, “Participation in pulmonary hypertension support group improves patient-reported health quality outcomes: a patient and caregiver survey,” was published in the journal Pulmonary Circulation.

A PH diagnosis often is associated with the emotional toll it can place on patients and their family members, which can manifest as depression, anxiety, and/or stress, among other symptoms. This emotional toll usually is proportional to the severity of the person’s symptoms, and can lead to poor prognosis and survival, according to researchers.

Joining a support group has been shown to help patients with chronic diseases, but information about its potential impact for people with PH is limited.

That led researchers at the Loma Linda University Medical Center, in California, to conduct a study assessing the impact of joining a support group on the quality of life of PH patients and their caregivers.

A total of 165 patients and caregivers, the vast majority ranging in age from 21 to 80, were asked to join the study, conducted among separate groups in 2018 and 2020. In all, 78% of the participants were women.

Quality of life and other factors were assessed using the emPHasis-10 questionnaire. Composed of 10 items, the total score ranges from 0 to 50, in which higher scores mean a worse quality of life.

Specifically, questions in emPHasis-10 focused on issues such as a patient’s level of frustration due to breathlessness, the need to rest during the day, feelings of exhaustion or burden, and energy level. Patients also were queried about their ability to walk up stairs without breathlessness, their confidence in public, and about how PH controls their lives.

More than half of the participants — 130 patients, corresponding to 65% — were recruited at the Pulmonary Hypertension Association’s 2018 International Pulmonary Hypertension Conference and Scientific Sessions, which took place in Florida, in the U.S. The remaining individuals in the study were recruited from the university’s PH regional clinical program, and enrolled from February to March 2020.

Among them, 122 (74.4%) were patients with PH and 41 (25.0%) were caregivers. Two participants decided not to respond to the questionnaire.

Most of the patients (51.8%) had WHO Group 1, which refers to pulmonary arterial hypertension. Also according to self-reports, 57.3% were categorized as belonging to class 2 or class 3 of the New York Heart Association (NYHA) Classification. Those classes denote that patients have a slight to marked limitation of their activities.

The majority were taking medications for PH, including Adcirca (tadalafil) and Letairis (ambrisentan).

The results showed that 118 participants attended a support group, while 47 did not. Most of those attending a support group (90.6%) reported that joining such groups had helped them.

More than half of the patients in the support groups were classified as WHO Group 1 (60.2%). Just over 20% of the patients attended such groups for less than one year, while about a third (31.1%) were members of support groups for one to three years, and 11.8% for three to five years.

More than a quarter (27.7%) attended such groups for five to 10 years, and 9.2% for more than 10 years.

The most common reason to join a support group was to better understand the disease — as reported by 42% — and to meet others with a similar condition, as noted by 32%.

Problems with transportation to the support group meetings were the most common reason for those not joining a support group (nine participants).

No differences were found in quality of life measures between participants who joined a support group and those who did not, as shown by the emPHasis-10 questionnaire median scores, which were 30 versus 32. Likewise, no differences were found in any of the domains assessed by the questionnaire.

Despite this, those joining a support group found it helpful, with benefits in self-healing, help in symptom management, more confidence in self-care, and improved adherence to medications. The participants also reported that, after joining their group, they better understood certain procedures common in PH, such as right heart catheterization. Significant differences were seen between patient and caregiver responses, with the percentage reporting such benefits higher in the patient group.

Additionally, a statistical analysis identified knowing the disease status according to the NYHA classification, and a greater distance to reach a PH physician, as factors significantly linked with worse quality of life.

“In conclusion, support group participation does not improve quality of life as assessed by emPHasis-10 scores but improves other meaningful health-related quality outcomes,” the scientists wrote.