My life with pulmonary arterial hypertension: a patient perspective
| Autor: | Pisana Ferrari, Hall Skåra |
|---|---|
| Rok vydání: | 2019 |
| Předmět: |
Patient experience
Patient-centred treatment medicine.medical_specialty business.industry Clinical study design Perspective (graphical) Articles Disease 030204 cardiovascular system & hematology Pulmonary arterial hypertension Patient advocacy Clinical trial 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) 030228 respiratory system Patient representatives Rare disease awareness Medicine Disease management (health) Cardiology and Cardiovascular Medicine business Intensive care medicine Patient associations |
| Zdroj: | European Heart Journal Supplements : Journal of the European Society of Cardiology |
| ISSN: | 1554-2815 1520-765X |
| DOI: | 10.1093/eurheartj/suz208 |
| Popis: | In recent years, there has been an increase in therapeutic options and treatment strategies for pulmonary arterial hypertension (PAH). However, patients still report delays in receiving a diagnosis, which is a significant burden associated with the disease, and which shows a general lack of disease awareness. This review has been written by two PAH patients to describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with PAH are living longer, it is important that they work with healthcare professionals to develop treatment strategies that improve and maintain quality of life. Healthcare professionals should consider a holistic approach to disease management, including dietary recommendations, individually adapted exercise, and options for counselling where available, alongside therapeutic treatments. The experiences of patients with PAH are important not just for individual patient treatment but should also be considered in clinical trial design and guideline development. Patient representatives and patient associations can play an influential role in improving the treatment and management of PAH. In this review, we use our experiences as patient representatives to describe the current situation of patients with PAH from first experiencing symptoms to receiving treatment, using two patient cases as examples. We also discuss the role of patient advocacy in improving PAH care and future roles for patient associations and patient representatives in the design of clinical trials and development of new treatment guidelines. |
| Databáze: | OpenAIRE |
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