“You Look Perfectly Healthy to Me”: Living With Postural Orthostatic Tachycardia Syndrome Through Adolescents’ and Parents’ Eyes

Abstract

Postural orthostatic tachycardia syndrome (POTS) is an autonomic dysfunction that impairs quality of life (QoL). Increased familiarity with the lived experiences of youth with POTS better informs our understanding of this condition and its impact on QoL, provides context and depth to existing research, and improves patient-centered care. Thus, this qualitative study seeks to develop a more robust understanding of QoL in this understudied population. Youth with POTS (N = 6) and their parents (N = 8) participated in semi-structured interviews. Following saturation, data were analyzed via conventional content analysis, including code/theme identification and member-checking. Four themes were identified (1) negative changes in functioning, (2) invalidation and difficulties living with an invisible condition, (3) trust and advocacy, and (4) need for increased resources and understanding. Findings suggest POTS negatively impacts adolescents’ QoL across domains. Based on participants’ responses, developing POTS-specific resources and integrating mental health services into interdisciplinary POTS treatment may improve youth’s QoL.