Lower quality of life in patients with pulmonary hypertension (PH) was found to be associated with higher burden experienced by their caregivers, according to a study conducted in Turkey.
The study, “Caregiver Burden in Patients with Pulmonary Hypertension,” was published in the journal Clinical Nursing Research.
Caregivers of patients with PH are responsible for many aspects of care such as the administration of medications, synchronizing medical visits and treatments, organizing the routine activities of daily living, and providing emotional support.
They are often isolated from active daily and professional activities, which can affect their own health. As such, caregiver burden is defined as the physical, emotional, and economic hardship experienced by caregivers.
In the study, a team of researchers at the Marmara University Medical School, in Turkey, evaluated the relationship between the quality of life of patients with PH and the burden of their caregivers. The team also investigated the factors that might be involved in caregiver burden.
The study was conducted between June and December 2019 and included 72 patients (73.6% women, mean age 60.8 years) and their caregivers (55.6% women, mean age 43.7 years).
Researchers measured patients’ systolic pulmonary arterial pressure and N-terminal pro B-type natriuretic peptide levels — a prognostic marker of cardiovascular function — and recorded six-minute walk distances, a standard measure of exercise capacity.
The patients’ quality of life was evaluated through the emPHasis-10 questionnaire, and caregiver burden was measured with the Zarit burden scale. Data were analyzed using statistical models.
The majority of patients (76.4%) had chronic thromboembolic pulmonary hypertension (CTEPH, classified as group 4). Almost all of the remaining patients were classified as group 1: congenital heart diseases (6.9%), idiopathic pulmonary arterial hypertension (5.6%), and pulmonary arterial hypertension associated with connective tissue diseases (5.6%). Four patients had pulmonary hypertension due to left heart diseases and lung diseases (5.6%; groups 2 and 3).
Patients were divided according to the World Health Organization classification: class 2 (33 patients, 45.83%), meaning patients with slight limitation of physical activity; class 3 (24 patients, 33.33%), patients with limited physical activity; and class 4 (15 patients, 20.83%), patients unable to carry out physical activity without symptoms.
Most of the caregivers were married (72.2%), and many were unemployed (66.7%). The majority of caregivers were spouses (30 or 41.7%) or children (33 or 45.8%) of the patients.
The mean caregiver burden score of the total group analyzed was 28.80, with a minimum of two and a maximum score of 76. The mean caregiver burden was significantly lower for male caregivers (23.70 vs. 34.06 for females) and significantly higher for unemployed caregivers (32.21 vs. 22.00 for employed caregivers).
Importantly, caregiver burden was significantly correlated with the quality of life of patients but was not correlated with other clinical parameters such as six-minute walk distances, systolic pulmonary arterial pressure, and N-terminal pro B-type natriuretic peptide levels.
For patients’ quality of life (mean score 30.83), worse scores were associated with decreased six-minute walk distances, worse WHO functional class, and increased N-terminal pro B-type natriuretic peptide levels.
Thus, “caregiver burden increases as the patients’ [quality of life] decreases,” the researchers wrote.
Although patients’ quality of life is influenced by clinical parameters and their functional status, these do not directly associate with caregiver burden, the team noted.
Limitations to the study’s findings were pointed out, including the small sample size, the fact it was conducted at a single center, and that the high number of patients with CTEPH did not allow for subgroup analysis.
“A multi-center study with a larger sample size that includes patients with PH with various etiologies and PH patients from all existing groups would help determine the similarities and differences between caregiver burden and influencing factors among these patient groups,” the team suggested.
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