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Assessment of comorbid symptoms in pediatric autonomic dysfunction

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Abstract

Purpose

Pediatric patients with autonomic dysfunction and orthostatic intolerance (OI) often present with co-existing symptoms and signs that might or might not directly relate to the autonomic nervous system. Our objective was to identify validated screening instruments to characterize these comorbidities and their impact on youth functioning.

Methods

The Pediatric Assembly of the American Autonomic Society reviewed the current state of practice for identifying symptom comorbidities in youth with OI. The assembly includes physicians, physician-scientists, scientists, advanced practice providers, psychologists, and a statistician with expertise in pediatric disorders of OI. A total of 26 representatives from the various specialties engaged in iterative meetings to: (1) identify and then develop consensus on the symptoms to be assessed, (2) establish committees to review the literature for screening measures by member expertise, and (3) delineate the specific criteria for systematically evaluating the measures and for making measure recommendations by symptom domains.

Results

We review the measures evaluated and recommend one measure per system/concern so that assessment results from unrelated clinical centers are comparable. We have created a repository to apprise investigators of validated, vetted assessment tools to enhance comparisons across cohorts of youth with autonomic dysfunction and OI.

Conclusion

This effort can facilitate collaboration among clinical settings to advance the science and clinical treatment of these youth. This effort is essential to improving management of these vulnerable patients as well as to comparing research findings from different centers.

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Acknowledgements

Drs. William Cheshire and Huang Choi provided valuable input into the development of this manuscript and preparation for publication.

Funding

The authors report no financial relationships relevant to this article to disclose.

Author information

Authors and Affiliations

  1. Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Sally E. Tarbell, John E. Fortunato, Lauren Marsillio & Debra E. Weese-Mayer

  2. Iowa Stead Family Children’s Hospital, Iowa City, IA, USA

    Erin L. Olufs & Natalie Van Waning

  3. Mayo Clinic, Rochester, MN, USA

    Philip R. Fischer, Shelley Ahrens & Kelsey Klaas

  4. Sheikh Shakhbout Medical City, Abu Dhabi, UAE

    Philip R. Fischer

  5. Khalifa University College of Medicine and Health Sciences, Abu Dhabi, UAE

    Philip R. Fischer

  6. Children’s Hospital of Richmond, Richmond, VA, USA

    Gisela Chelimsky

  7. Virginia Commonwealth University Health, Richmond, VA, USA

    Gisela Chelimsky & Thomas C. Chelimsky

  8. University of Texas McGovern Medical School, Houston, TX, USA

    Mohammed T. Numan & Ian J. Butler

  9. New York Medical College, Valhalla, NY, USA

    Marvin Medow & Julian Stewart

  10. Children’s Heart Institute, Herndon, VA, USA

    Hasan Abdallah

  11. Jeffrey R. Boris, MD LLC, Moylan, PA, USA

    Jeffrey R. Boris

  12. Granger Medical Clinic, Riverton, UT, USA

    Craig Coleby

  13. Ann & Robert H. Lurie Children’s Hospital, Chicago, IL, USA

    John E. Fortunato, Lauren Marsillio & Debra E. Weese-Mayer

  14. Starship Children’s Hospital, Auckland, New Zealand

    Raewyn Gavin

  15. Rosalind Franklin University of Medicine and Science, North Chicago, IL, USA

    Janice Gilden

  16. University of Florida College of Medicine, Gainesville, FL, USA

    Renato Gonik

  17. Stanley Manne Research Institute, Chicago, IL, USA

    Lauren Marsillio & Debra E. Weese-Mayer

  18. American Family Children’s Hospital, Madison, WI, USA

    Erin Marriott

  19. Metrodora Institute, Salt Lake City, UT, USA

    Laura A. Pace

  20. University of Minnesota Medical School, Minneapolis, MN, USA

    Paul Pianosi

  21. Medical College of Wisconsin, Milwaukee, WI, USA

    Pippa Simpson

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  1. Sally E. Tarbell
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  2. Erin L. Olufs
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Contributions

Sally E. Tarbell, PhD, Philip R. Fischer, MD, and Erin L. Olufs, PhD: conceived of and designed this paper, did the literature review to acquire data, and analyzed and interpreted the data/material included in this manuscript. They drafted the original and revised all subsequent versions of the manuscript. They prepared and approved the final version to be published, and they agree to be fully accountable for all aspects of the work. Gisela Chelimsky, MD, Mohammed T. Numan, MD, Debra E. Weese-Mayer, MD, and Marvin Medow, PhD: contributed to the design of the paper, had substantive input into the interpretation of data/material included in this manuscript, and reviewed all drafts of the manuscript and made substantive input into those drafts while also contributing to the writing of the final draft. They approved the final version to be published, and they agree to be fully accountable for all aspects of the work. Hasan Abdallah, MD, Shelley Ahrens, APRN, CNP, DNP, Jeffrey R. Boris, MD, Ian J. Butler, MD, Thomas C. Chelimsky, MD, Craig Coleby, MD, John E. Fortunato, MD, Raewyn Gavin, MB Ch, Janice Gilden, MD, Renato Gonik, MD, Kelsey Klaas, MD, Erin Marriott, MS, RN, CPNP, Mohammed Numan, MD, Laura A. Pace, MD, PhD, Paul Pianosi, MD, Pippa Simpson, PhD, Julian Stewart, MD, PhD, and Natalie Van Waning, MSN, ARNP, CPNP-PC: contributed to the design of the paper, had input into the interpretation of data/material included in this manuscript, and reviewed all drafts of the manuscript and provided input into those drafts. They approved the final version to be published, and they agree to be fully accountable for all aspects of the work. Lauren Marsillio, MD: contributed to the design of the paper, had input into the interpretation of data/material included in this manuscript, and reviewed most drafts of the manuscript and provided input into those drafts. She passed away before the final draft of the manuscript was prepared.

Corresponding author

Correspondence to Sally E. Tarbell.

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Conflict of interest

Dr. Boris is an unpaid member of the Medical Advisory Board of Dysautonomia International. The other authors declare no conflict of interest.

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Tarbell, S.E., Olufs, E.L., Fischer, P.R. et al. Assessment of comorbid symptoms in pediatric autonomic dysfunction. Clin Auton Res 33, 843–858 (2023). https://doi.org/10.1007/s10286-023-00984-4

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