Study: The Effect of Patient Support Groups on Pulmonary Hypertension Patients and their Caregivers

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There are seven major categories of support groups including mental and emotional support, addiction, bereavement, or medical support. The latter groups are designed for patients according to a specific disease. Patients develop an improved understanding of their disease when they are surrounded by others sharing their experiences.

Researchers designed a study that has since been published in Pulmonary Hypertension News. The study, one of the first of its kind, found pulmonary hypertension (PH) patients who regularly attend support groups are better able to manage their symptoms and follow their doctor’s instructions

Other benefits include self-assurance, a better understanding of their disorder, and the ability to comprehend the procedure called right heart catheterization. That is a test that is administered to determine the number of times the patient’s heart pumps per minute. It also measures blood pressure in the patient’s heart and lungs.

The researchers point out though that participation in support groups does not in any way improve a PH patient’s quality of life (QOL).

The Emotional Toll of a PH Diagnosis

When a patient receives a PH diagnosis, the whole family is immediately involved. The patient may experience anxiety, depression, or stress which in turn can diminish chances of survival.

Patient and caregiver responses to the study questions differed widely. The patient group reported seeing a higher number of benefits.

Among reasons for claiming the support group lowers QOL, some in the group identified having to travel farther to see a PH physician as lowering the quality of life.

About the Study

A team of researchers from the Medical Center at Loma Linda, California, conducted a study analyzing how joining a support group affected PH patients and caregivers.

The participants (a total of 165) ranged in age from twenty-one to eighty. Seventy-eight percent of the participants were women. Separate groups were assessed in 2018 and 2020 using as a gauge a ten-line item questionnaire called emphasis-10. The scores ranged from zero to fifty with the higher score indicating a worse QOL.

The questions involved issues pertaining to the patient’s frustration towards breathlessness, low energy level, confidence while out in public, and how PH has taken control of their lives.

About seventy-four percent of enrolled patients had PH while twenty-five percent of the enrollment were caregivers. Using self-assessment relating to the NYHA classification, fifty-seven percent of patients were classified as having some limitations to their daily activities.

The scientists concluded the study with the assessment that the QOL is not improved through support group participation, but improvement was seen in several health-related issues.

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Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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