Patient experience with pulmonary hypertension in Spain

TL;DR

This study in Spain shows that patient support programs significantly improve the quality of life and disease management for people with pulmonary arterial hypertension.

Contribution

The study provides empirical evidence on the effectiveness of patient support programs for PAH in a Spanish context.

Findings

Support programs improve patients' perception of their ability to manage the disease.

Quantitative results show significant improvements in quality of life and disease management indicators.

There is a gap in access to emotional and educational support within the healthcare system.

Abstract

This study explores the experiences of patients with pulmonary arterial hypertension (PAH) in Spain, focusing on the impact of patient support programs on disease management and quality of life. This study aimed to evaluate the effectiveness of patient support programs for PAH in improving disease management and quality of life of patients with PAH.

A mixed study was carried out, applying qualitative and quantitative techniques with the aim of exploring and quantifying the experience of participants in support programs for PAH patients. It started with a integrate review of the literature which feed a qualitative phase where 14 patients (all women) diagnosed with PAH at least one year before were involved in focus groups. Subsequently, a quantitative phase was carried out, in which 36 patients, selected by non-probabilistic sampling, participated.

This study found that support programs substantially improve the quality of life and disease management in patients with PAH. In the qualitative phase, participants reported an improved perception of their ability to manage the disease, attributed to the emotional support and information provided. In the quantitative phase, considerable improvements were observed in several indicators of quality of life and disease management, corroborating the qualitative findings.

Patient support programs are essential for improving disease management and the quality of life of patients with PAH. However, the findings highlight a gap in access to emotional and educational support within the healthcare system.

The online version contains supplementary material available at 10.1186/s13023-025-03752-x.

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