The PAH patient's perspective.

Area of Science:

• Cardiology
• Pulmonology
• Patient Advocacy

Background:

• Pulmonary Hypertension (PH) is a serious condition in adults with congenital heart disease (CHD).
• Advances in CHD care allow patients to live longer, increasing the prevalence of PH-associated conditions.
• Pulmonary Arterial Hypertension associated with Congenital Heart Disease (PAH-CHD) presents unique challenges.

Purpose of the Study:

• To explore the multifaceted issues faced by patients living with PAH-CHD.
• To highlight the physical, emotional, social, and financial impacts of PAH-CHD.
• To provide patient perspectives on living with this complex condition.

Main Methods:

• Qualitative study involving interviews with two patients diagnosed with PAH-CHD.
• Exploration of patient experiences related to diagnosis, physical limitations, mental health, relationships, finances, and family planning.

Main Results:

• Patients with PAH-CHD encounter significant physical limitations and psychological distress, including depression and anxiety.
• The condition impacts social interactions, family dynamics, financial stability, and reproductive choices.
• Living with PAH-CHD necessitates comprehensive management strategies addressing diverse patient needs.

Conclusions:

• PAH-CHD imposes a substantial burden on patients' quality of life.
• Addressing the holistic needs of PAH-CHD patients is crucial for improving outcomes.
• Further research and patient support are essential for managing PAH-CHD effectively.