Pulmonary arterial hypertension (PAH) impacts multiple aspects of patients’ and caregivers’ lifes, a new survey from China shows.
The study, “The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey,” was published in the journal Medicine.
PAH is a chronic and progressive disease. Recent therapies are able to improve PAH prognosis and patients’ survival, but the disease still has no cure.
The severity of the symptoms — difficult breathing, fatigue, chest pain, even loss of consciousness due to reduced blood flow to the brain — considerably affects patients health-related quality of life. Psychological symptoms, such as anxiety, depression, panic attacks and panic disorders, have also been reported.
PAH treatment also carries significant financial burden to patients’ families.
Few studies address the impact of PAH on patients and caregivers, in particular the emotional aspects and their association with patients’ health.
This study primarily aimed at investigating PAH’s broader impact in a group of Chinese patients and caregivers, as well as its financial burden on families. The team conducted a large-scale national survey involving 174 adults (114 patients and 60 caregivers), using face-to-face interviews.
A research team was led by Chen Wang, MD, with the Department of Respiratory and Critical Care Medicine, Center for Respiratory Diseases, China-Japan Friendship Hospital, and the National Clinical Research Center of Respiratory Diseases, in Beijing, China.
Results showed that PAH influenced all aspects of patients’ lives, including daily activities (more than 90% of patients), work, emotions, and personal relationships. A major impact on work abilities, with financial consequences, was reported by both patients and caregivers.
Data also demonstrated that treatment expenses represent a major financial burden and a source of stress to families, particularly those with lower-than-average income. But this could be eased by economic support from public authorities.
Most patients also experienced feelings of isolation, which may be potentiated by a lack of public understanding about the disease, resulting in less compassion towards PAH patients from the community and close relatives.
In this regard, most patients and caregivers expressed a desire to “talk about the impacts of PAH on their lives with their family and friends, followed by patient organizations, PAH specialists, other PAH patients, etc.,” the authors wrote.
Caregivers also reported being exhausted by the disease’s demands, which led to a subtle change in the patient-caregiver relationship and to stress.
In comparison to similar studies in American and European cohorts, Chinese caregivers were more likely to “report that their relative’s PAH had a significant impact on their lives; meanwhile they reported more involvement in tasks that their relatives used to manage, such as household chores and errands, and had higher levels of exhaustion and organization” the team wrote.
Overall, the study informs on the profound impact of PAH and provides a basis for comparison with non-Chinese populations. The results “could provide guidance for the future management of PAH,” the researchers noted.
“It is of vital significance for healthcare professionals to provide more support and information for PAH families,” the team concluded.