The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study
Dysautonomia refers to any disorder involving altered function of the autonomic nervous system. Dysautonomia can be debilitating as it often affects multiple organ systems. The diagnostic journey for individuals affected by dysautonomia can be hindered by symptom overlap with other conditions and by...
Saved in:
| Main Authors: | , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2025-01-01
|
| Series: | Journal of Patient Experience |
| Online Access: | https://doi.org/10.1177/23743735251314651 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1832592282076839936 |
|---|---|
| author | John A. O’Dell MSN, MBA Ash Walker DHSc Andrew J. Latham PhD Daniel J. Parisian PhD Lindsay E. Branch BS Dreena D. Vanderburg Ava A. Cox Shelley Chavis Silvia E. Smith PhD |
| author_facet | John A. O’Dell MSN, MBA Ash Walker DHSc Andrew J. Latham PhD Daniel J. Parisian PhD Lindsay E. Branch BS Dreena D. Vanderburg Ava A. Cox Shelley Chavis Silvia E. Smith PhD |
| author_sort | John A. O’Dell MSN, MBA |
| collection | DOAJ |
| description | Dysautonomia refers to any disorder involving altered function of the autonomic nervous system. Dysautonomia can be debilitating as it often affects multiple organ systems. The diagnostic journey for individuals affected by dysautonomia can be hindered by symptom overlap with other conditions and by limited access to autonomic specialists. The present patient-reported outcome study aims to characterize the diagnostic journey of 672 adult individuals affected by different types of dysautonomia. The average time to diagnosis was 7.7 years (SD 10 years) and diagnosis was made primarily by cardiologists, followed by neurologists, and internists or primary care physicians. Common comorbid conditions are Ehlers-Danlos syndrome, mast cell disorders, vitamin deficiency, fibromyalgia, and myalgic encephalomyelitis, all of which can contribute to the symptoms burden and can potentially confound the diagnostic process. We suggest that the prolonged time to diagnosis contributes to morbidity and compounds the psychological and economic burden of dysautonomia. Raising awareness about the numerous obstacles that hinder the diagnostic process among both clinicians and dysautonomia patients is the first step to reduce morbidity and improve clinical outcomes. |
| format | Article |
| id | doaj-art-4b5c97b467e449069120e96cdc3c1bfd |
| institution | Kabale University |
| issn | 2374-3743 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Patient Experience |
| spelling | doaj-art-4b5c97b467e449069120e96cdc3c1bfd2025-01-21T11:03:21ZengSAGE PublishingJournal of Patient Experience2374-37432025-01-011210.1177/23743735251314651The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome StudyJohn A. O’Dell MSN, MBA0Ash Walker DHSc1Andrew J. Latham PhD2Daniel J. Parisian PhD3Lindsay E. Branch BS4Dreena D. Vanderburg5Ava A. Cox6Shelley Chavis7Silvia E. Smith PhD8 Department of Biology, University of North Carolina Pembroke, Pembroke, NC, USA Department of Kinesiology, University of North Carolina Pembroke, Pembroke, NC, USA Department of Mathematics and Computer Science, University of North Carolina Pembroke, Pembroke, NC, USA Department of Economics, Marketing, Entrepreneurship, and Analytics, University of North Carolina Pembroke, Pembroke, NC, USA Department of Biology, University of North Carolina Pembroke, Pembroke, NC, USA Department of Biology, University of North Carolina Pembroke, Pembroke, NC, USA Department of Biology, University of North Carolina Pembroke, Pembroke, NC, USA Department of Biology, University of North Carolina Pembroke, Pembroke, NC, USA Department of Internal Medicine, Pulmonary Division, University of Utah School of Medicine, Salt Lake City, UT, USADysautonomia refers to any disorder involving altered function of the autonomic nervous system. Dysautonomia can be debilitating as it often affects multiple organ systems. The diagnostic journey for individuals affected by dysautonomia can be hindered by symptom overlap with other conditions and by limited access to autonomic specialists. The present patient-reported outcome study aims to characterize the diagnostic journey of 672 adult individuals affected by different types of dysautonomia. The average time to diagnosis was 7.7 years (SD 10 years) and diagnosis was made primarily by cardiologists, followed by neurologists, and internists or primary care physicians. Common comorbid conditions are Ehlers-Danlos syndrome, mast cell disorders, vitamin deficiency, fibromyalgia, and myalgic encephalomyelitis, all of which can contribute to the symptoms burden and can potentially confound the diagnostic process. We suggest that the prolonged time to diagnosis contributes to morbidity and compounds the psychological and economic burden of dysautonomia. Raising awareness about the numerous obstacles that hinder the diagnostic process among both clinicians and dysautonomia patients is the first step to reduce morbidity and improve clinical outcomes.https://doi.org/10.1177/23743735251314651 |
| spellingShingle | John A. O’Dell MSN, MBA Ash Walker DHSc Andrew J. Latham PhD Daniel J. Parisian PhD Lindsay E. Branch BS Dreena D. Vanderburg Ava A. Cox Shelley Chavis Silvia E. Smith PhD The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study Journal of Patient Experience |
| title | The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study |
| title_full | The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study |
| title_fullStr | The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study |
| title_full_unstemmed | The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study |
| title_short | The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study |
| title_sort | diagnostic journey of dysautonomia patients insights from a patient reported outcome study |
| url | https://doi.org/10.1177/23743735251314651 |
| work_keys_str_mv | AT johnaodellmsnmba thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT ashwalkerdhsc thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT andrewjlathamphd thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT danieljparisianphd thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT lindsayebranchbs thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT dreenadvanderburg thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT avaacox thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT shelleychavis thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT silviaesmithphd thediagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT johnaodellmsnmba diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT ashwalkerdhsc diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT andrewjlathamphd diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT danieljparisianphd diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT lindsayebranchbs diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT dreenadvanderburg diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT avaacox diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT shelleychavis diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy AT silviaesmithphd diagnosticjourneyofdysautonomiapatientsinsightsfromapatientreportedoutcomestudy |