Key result
Adults with POTS described significant quality of life impacts, diagnostic delays, and frequent medical dismissal, emphasizing a need for compassionate, patient-centered care.
Why the study?
Postural orthostatic tachycardia syndrome (POTS) is a burdensome autonomic condition characterized by orthostatic intolerance, prompting a qualitative investigation into the lived experiences, emotions, and coping strategies of affected adults.
What are the illness-related experiences, emotions, and coping strategies among adults living with postural orthostatic tachycardia syndrome (POTS)?
What are the illness-related experiences, emotions, and coping strategies among adults living with postural orthostatic tachycardia syndrome (POTS)?
Qualitative insights reveal that POTS causes profound functional impairment and frustration with the healthcare system, highlighting the critical need for empathy and holistic patient-centered care.
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.
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Walsh et al. (2025) studied Postural orthostatic tachycardia syndrome (POTS) (n=29). Living with postural orthostatic tachycardia syndrome was evaluated on Qualitative themes of illness-related experiences, emotions, and coping strategies. Adults with POTS described significant quality of life impacts, diagnostic delays, and frequent medical dismissal, emphasizing a need for compassionate, patient-centered care.
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