CHEST Guidelines-Pulmonary-Hypertension-Care-Center Network

Pulmonary-Hypertension-Care-Center Network_20

Pdf Summary

Pulmonary hypertension (PH) is a chronic, progressive, and life-threatening disease requiring specialized multidisciplinary care. To address this need, the Pulmonary Hypertension Association established a network of pulmonary hypertension care centers (PHCCs) across the United States. These centers offer specialized care, facilitate research, and aim to improve outcomes for patients with PH. Since the inception of PHCCs in 2014, 35 centers have been accredited. These centers form a model for integrating care by bringing together various specialists to offer comprehensive treatment.<br /><br />One key feature of PHCCs is a patient registry that collects data to evaluate patient outcomes and identify opportunities for improvement. This effort has highlighted the persistent challenges in timely diagnosis and appropriate treatment of PH, underscoring the need for expert-focused centers. Delayed diagnosis remains an issue, with the time from symptom onset to diagnosis often taking over two years, leading to misdiagnosis and inappropriate treatments.<br /><br />The PHCC initiative also includes a robust accreditation process. The centers are classified into comprehensive care centers and regional clinical programs based on their resources and capabilities. This system aims to standardize care, improve access, and foster collaboration among PH professionals. Accredited centers are required to participate in the Pulmonary Hypertension Association Registry (PHAR) to collect and share data, allowing for broader research and improved care standards.<br /><br />The effort to improve PH care includes promoting a guideline-based approach to diagnosis and treatment and enhancing public and professional awareness. The PHCC model is a step toward ensuring patients with PH receive timely, effective care and benefit from advancements in treatment and research. The initiative also seeks to change the culture of PH care, emphasizing continuous improvement, collaboration, and patient and family involvement in the care process.

Keywords

Pulmonary Hypertension

PHCCs

specialized care

patient registry

timely diagnosis

accreditation process

PHAR

comprehensive treatment

guideline-based approach

collaboration