Jean Elwing, MD, (right) is among the first healthcare professionals to order the updated “Navigating PH” for her clinic. She appears in this photo with PHA’s Zan Laughlin and Daniel Layton at CHEST 2024.

People with PH, caregivers and healthcare professionals can download or order a print copy of our recently updated “Navigating Pulmonary Hypertension: A Guide for Patients and Families.”

The Pulmonary Hypertension Association’s 64-page booklet was originally designed in 2021 for newly diagnosed patients, but because the guide proved helpful and popular among all people with PH, their families and friends at every step of the PH journey, we tweaked the name to be more inclusive.

As in the original version, the book is divided into color-coded sections. The new version includes more information about the types of PH, diagnosis, testing, treatment, coping, managing PH and navigating potential problems. We also updated the resources to connect, engage and learn. Each section also has side bars and callouts about pediatric PH.

In addition to updating the content, PHA also changed the way we distribute the books. We now provide healthcare professionals the ability to order multiple copies of the books to hand out in their clinics. The books are free, but those who order in bulk must pay for shipping.

Jean Elwing, director of the University of Cincinnati Medical Center’s PH program, is among the healthcare providers who have placed an order for her clinic’s patients and gave a glowing review of the new publication.

“This updated guide is one of the most comprehensive and patient-centered pulmonary hypertension educational resources I have reviewed,” Elwing says. “It is informative, visually engaging, practical and highly accessible for patients and caregivers with varying levels of health literacy.

“I am very much looking forward to incorporating this guide into my own patient education and teaching,” said Elwing. “I believe it will become an invaluable resource that empowers patients and families to better understand pulmonary hypertension, actively participate in their care and navigate their journey with greater confidence.”

Easy-to-understand content

Among the book’s strengths: The written content is robust, evidence-based and presented in language that is understandable without oversimplifying complex medical concepts, Elwing says.

“The guide strikes an excellent balance between providing detailed information and remaining approachable for patients and caregivers.”

Elwing appreciates that the book addresses all groups of PH rather than solely focusing on pulmonary arterial hypertension, as many educational materials have done in the past. The explanations of functional class, disease classification and how those concepts relate to symptoms and treatment are particularly valuable in helping patients better understand their condition, she says.

“I also appreciate that the guide emphasizes comprehensive patient care,” she says. “In addition to discussing pulmonary hypertension-specific therapies, it highlights the importance of symptom management, supportive care and palliative care as integral components of treatment.

Inclusive, thoughtful design

Elwing praised the guide’s organization, thoughtful design and comprehensive approach to educating patients and caregivers throughout every stage of their PH journeys.

“The progression of information is intuitive, making it useful for newly diagnosed patients, while also serving as an ongoing reference for those living with pulmonary hypertension,” she says.

Elwing also complimented the visual design, especially the inclusive, high-quality photographs and illustrations that represent a diverse patient population.

“The diagrams are exceptionally clear and easy to understand,” she says. “They will serve as outstanding teaching tools during clinic visits and patient education sessions.”

She was particularly impressed by photographs and illustrations of various diagnostic tests. The images can help patients understand what to expect during testing, reduce anxiety about unfamiliar procedures, and reinforce the purpose and significance of each test in the diagnostic process, she says.

“One of my favorite features is the use of highlighted callout boxes that emphasize key educational points throughout the guide,” she says.

The book’s pediatric-specific side bars and callouts acknowledge the unique needs of children and their families, making the guide applicable across age groups. Designated spaces throughout the guide allow patients and caregivers to document health information, medications, care plans and questions for their healthcare teams, which makes the book an interactive resource rather than simply a reference book.

Elwing said she likes the QR codes integrated throughout the book that provide convenient access to supplemental educational materials on important topics such as lung transplantation, medications, patient empowerment, advocacy and other valuable resources on the PHA website.

“This integration of print and digital education significantly enhances the usability of the guide and allows patients to continue learning beyond the pages of the book.”