Kristi Glotzbach, MD
Influence of Pediatric Cardiomyopathy on Health Related Quality of Life
Albert Einstein College of Medicine, Bronx, NY
2015 Amount Awarded – $50,000
Pediatric cardiomyopathy (CM) affects 1.13 in 100,000 children every year. Patients and families struggle with the disease burden, medications and procedures on a daily basis. Cardiomyopathy not only affects physical health but negatively impacts emotional health, neurodevelopment and psychosocial functioning in patients and their families. Despite these statistics and concerns, most pediatric studies focus on therapies for CM, and few address the influence of CM on patient and family quality of life (QoL). With traditional forms of research, approaching patients at one center or at multiple centers are limited by the availability of participants at each center. In the current era, patients and families are well informed about their disease, and they are using social media resources to find other families living with similar diseases and making beneficial personal connections. This study will utilize social media for patient recruitment to enroll more participants compared to traditional enrollment strategies. Patients and their caregivers will be asked to complete a survey called the Pediatric Cardiac Quality of Life Inventory (PCQLI). PCQLI scores and specific answers will identify modifiable life stressors that influence QoL and set clinical targets for improving the care of patients with CM. Families will be recruited to participate and share their experiences through Facebook and other social media sites. This research approach will establish social media as a novel and valid method of patient recruitment. Additionally, a new community will emerge for discussion amongst CM patients, families and health care providers.