The words of Dr. Francis Peabody still ring true almost 100 years after they were first uttered. “The secret of the care of the patient is in caring for the patient.” As providers of patients with pulmonary hypertensive vascular disease (PVHD) we direct the pathway for a patient’s medical care which has considerable impacts on their quality of life. It is imperative that our patients are viewed as people beyond their diagnosis. Pulmonary hypertension (PH) is a disease that affects patients across the lifespan. Each stage in the life of a PH patient presents its own unique challenges which require expert collaboration for holistic care and overall wellbeing. In this issue of Advances in Pulmonary Hypertension we have gathered patients, caregivers, physicians, nurses, social workers, and psychologists to address issues that affect all age groups as they navigate their way through life with PH. Our hope is that this will inspire you to think creatively to care your patients and families beyond their diagnosis with the goal of overall wellbeing and quality of life.
In the PHPN Corner, Allison D’Souza, RN offers a personal perspective of how living with PH has empowered her to be a better and more compassionate provider in “From Patient to Provider: How My Diagnosis Makes Me a Better Nurse.” She has transitioned from a teenager adjusting to a new diagnosis to a pediatric cardiac ICU nurse guiding young patients to find hope.
Dr. Hilary DuBrock and her team at the Mayo Clinic provide an overview of how PH effects quality of life. They synthesize the evidence regarding palliative care in PH and other cardiopulmonary diseases. DuBrock and team make a strong argument to incorporate palliative care in the longitudinal management of patients with PH.
In “Perspectives on Mental Health Evaluation in Pediatric Pulmonary Hypertension: A Call to Action” an argument is made for more robust mental health screening practices integrated within care guidelines for pediatric PH. While providers recognize symptoms of anxiety and depression in their patients, few actually screen for anxiety and depression with intention to connect to mental health services. The authors from the AHP group of the Pediatric Pulmonary Hypertension Network (PPHNet) identify the existing barriers to accessing mental health services in pediatrics.
In the current age, social media has been integrated into everyday life. Elise Whalen, NP and her co-authors from Texas Children’s Hospital provide a unique discussion on social media participation as a support system among caregivers of children with PH.
Finally in the round table discussion, co-editors Claire Parker, NP and Nancy Bair, CNS gather Maddie Bonpin, a pediatric PH patient and her mother, Liza Bonpin, and Dr. Neal Chaisson to discuss transitions throughout the lifespan of a pulmonary hypertension patient.
Thank you to all the authors and participants who contributed to this issue. We are thankful for the PHA and Allen Press for their support and guidance to bring this discussion to publication. We hope this issue encourages you to actively engage in the improvement of quality of life and overall wellbeing of your patients.