Toward Developing a Patient Reported Outcomes Measure for Children with Heart Failure: A Qualitative Study Design.

Area of Science:

• Pediatric Cardiology
• Patient-Reported Outcomes
• Adolescent Health

Background:

• Patient-reported outcome measures (PROMs) are standard in adult heart failure (HF) care but not pediatric HF (PHF).
• Existing adult PROMs are unsuitable for pediatric patients due to differing HF manifestations and life experiences.
• Adolescent experiences with HF require tailored assessment tools.

Purpose of the Study:

• To explore the lived experiences of adolescents with HF.
• To gather insights for developing a specific PROM for pediatric heart failure.
• To inform clinical management and regulatory evaluation for adolescent HF patients.

Main Methods:

• Qualitative interviews and focus groups conducted with adolescents (12-21 years) and caregivers.
• Participants recruited from two children's hospitals between 2019-2020.
• Directed content analysis used to identify key themes in patient experiences.

Main Results:

• Twenty-one patients and 12 caregivers participated.
• Identified themes included functional impairment (daily activities), social impairment (isolation), emotional effects (anxiety, depression), and illness burden (medications, appointments).
• Adolescents' health and social experiences with HF are distinct from adults.

Conclusions:

• A PROM specifically designed for adolescents with HF is necessary.
• Such a tool would enhance clinical care for this population.
• An adolescent-specific PROM would aid regulatory bodies in evaluating new treatments.