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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.

SUBMITTER: Zhai Z

PROVIDER: S-EPMC5626251 | biostudies-literature | 2017 Sep

REPOSITORIES: biostudies-literature

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

Zhai Zhenguo Z Zhou Xia X Zhang Shuai S Xie Wanmu W Wan Jun J Kuang Tuguang T Yang Yuanhua Y Huang Huan H Wang Chen C

Medicine 20170901 39

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 pu ...[more]

PMID: 28953608

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Project description:BackgroundPulmonary Arterial Hypertension (PAH) is a rare, debilitating, and potentially fatal disease. This study aims to quantify the economic burden of PAH in Spain.MethodsThe study was conducted from a societal perspective, including direct and indirect costs associated with incident and prevalent patients. Average annual costs per patient were estimated by multiplying the number of resources consumed by their unit cost, differentiating the functional class (FC) of the patient. Total annual costs per FC were also calculated, taking the 2020 prevalence and incidence ranges into account. An expert committee validated the information on resource consumption and provided primary information on pharmacological consumption. Unit costs were estimated using official tariffs and salaries in Spain. A deterministic sensitivity analysis was conducted to test the uncertainty of the model.ResultsThe average annual total cost was estimated at €98,839 per prevalent patient (FC I-II: €65,233; FC III: €103,736; FC IV: €208,821), being €42,110 for incident patients (FC I-II: €25,666; FC III: €44,667; FC IV: €95,188). The total annual cost of PAH in Spain, taking into account a prevalence between 16.0 and 25.9 cases per million adult inhabitants (FC I-II 31.8%; FC III 61.3%; FC IV 6.9%) and an incidence of 3.7, was estimated at €67,891,405 to €106,131,626, depending on the prevalence considered. Direct healthcare costs accounted for 64% of the total cost, followed by indirect costs (24%), and direct non-healthcare costs (12%). The total costs associated with patients in FC I-II ranged between €14,161,651 and €22,193,954, while for patients in FC III costs ranged between €43,763,019 and €68,391,651, and for patients in FC IV between €9,966,735 and €15,546,021. In global terms, patients with the worst functional status (FC IV) account for only 6.9% of the adults suffering from PAH in Spain, but are responsible for 14.7% of the total costs.ConclusionsPAH places a considerable economic burden on patients and their families, the healthcare system, and society as a whole. Efforts must be made to improve the health and management of these patients since the early stages of the disease.

Dataset Information

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

Publications

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

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