The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey

Abstract

Pulmonary arterial hypertension (PAH) is a chronic progressive devastating disease. Symptom burden might impair health-related quality of life of patients. Furthermore, treatment on this disease brings significant financial burden to patients' families. Both physiological and psychological symptoms have been reported, but limited evidence regarding the impact of PAH on patients and caregivers exists, especially the emotional issues and their association with patients' health quality. The main purpose of this study was to describe the impact of PAH on patients and their caregivers in a Chinese population.This large-scale national survey enrolled 174 participants to complete questionnaires using face-to-face semistructured interviews.PAH influenced all aspects of patients' lives including daily activities, work, emotions, and personal relationships. Both patients and caregivers reported a major impact on family finances and on their work. The majority of patients had feelings of isolation. A lack of public understanding about PAH contributes to social isolation. Most patients and caregivers would like to get information regarding PAH doctors and patient organization contacts to obtain support.This survey-based report provides information regarding the way and extent to which PAH impacts both patients and their caregivers and provides some means for comparison with non-Chinese populations. It is important for physicians and the community to offer more support and information for PAH patients and their families.

Figure 1

Impact of PAH on work and employment for patients and caregivers: more than a half of those participants had their work conditions affected. Special attention should be paid to the fact that more impacts were reported by caregivers. This may be resulted from the more responsibilities they take after their relatives get ill. PAH = pulmonary arterial hypertension.

Figure 2

Causes for feelings of isolation as a result of PAH: social isolation was common among pulmonary hypertension patients and their caregivers. Data on the causes for feelings of isolation was presented in this table in a comparable pattern. PAH may influence interpersonal relation from various ways. PAH = pulmonary arterial hypertension.

Figure 3

PAH information required by patients and caregivers: information required by patients and their caregivers was similar. Most information needed was related to the patients, directly or indirectly. PAH = pulmonary arterial hypertension.

Figure 4

Impacts on sexual relations post diagnosis: data presented in the figure showed reasons for sexual impacts and change in level of intimacy between spouses (mainly from the angle of the caregivers).

Figure 5

Financial burden: financial problems were especially serious in Chinese PH patients’ family. Those 3 figures showed the financial condition in those families and the financial burden imposed by treatment for the disease. PH = pulmonary hypertension.