A qualitative exploration of illness-related experiences, emotions, and coping among adults with postural orthostatic tachycardia syndrome (POTS).

Abstract

Postural orthostatic tachycardia syndrome (POTS) is a relatively common, burdensome condition of the autonomic nervous system characterized by orthostatic intolerance. This paper presents a subset of findings from a qualitative study investigating the lived experience and perspectives of adults with POTS. Twenty-nine individuals participated in a series of focus groups. We present a conceptual model which summarizes themes related to illness-related experiences, emotional reactions, and coping strategies, and distinguishes how these vary from pre- to post-diagnosis. Our findings emphasize the myriad challenges of living with a condition with diffuse and wide-ranging symptoms, significant quality of life impacts, and limited treatment options, as well as the role of active coping strategies in facing these challenges and their emotional impacts. Additionally, we summarize themes of patient-derived suggestions for improvement in care, which highlight the importance of compassionate, patient-centered care and mental health care to support adaptive coping.