Treatment barriers in PANS/PANDAS: Observations from eleven health care provider families

Abstract

Introduction:
Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) are severe but highly treatable postinfectious inflammatory brain conditions. Despite published diagnostic and treatment guidelines for this condition, there are long delays in obtaining appropriate care. The reasons for these delays are poorly understood. We sought to identify health care system barriers to timely treatment by examining cases of PANDAS/PANS occurring in children of health care professionals.

Method:
We recruited families via e-mail request through the PANDAS Physicians Network. Participating parents completed a structured questionnaire and provided a written case description.

Results:
Eleven families completed data collection, representing a broad spectrum of disease (child disease onset age 4-15, 7 males/4 females, mild to severe). Parents included 11 physicians, 2 mental health professionals, 2 nurses, and a PharmD. Nine cases (82%) had "very delayed" diagnosis and treatment (>4 weeks after onset). The most commonly encountered causes for treatment delay were clinician lack of awareness (82%), clinician skepticism (82%), overdependence on diagnostic testing (91%), and out-of-pocket expenses >$100 US (82%). Other common challenges included difficulties finding a provider to spearhead care (64%), psychological misdiagnosis (55%), and children's suppression of behaviors during assessments (55%).

Conclusions:
We found numerous barriers to treatment of PANDAS/PANS among children of health care providers. Our findings suggest that even among the medically sophisticated, PANDAS/PANS diagnosis and treatment remains challenging. Improvement in PANDAS/PANS education of clinicians who may encounter children with this disorder is 1 key step toward addressing our identified barriers. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Full text

Treatment Barriers in PANS/PANDAS: Observations From Eleven
Health Care Provider Families
Angela W. Tang, MD
1
, Heidi J. Appel, MD
2
, Stacie C. Bennett, MD
3
,
Leighann H. Forsyth, PhD
4
, Susan K. Glasser, MD
5
, Maura A. Jarka, RN, APN
6
,
Pierre D. Kory, MD
7
, Amy N. Malik, MD
8
, Andrea I. Martonoffy, MD
9
,
Lena K. Wahlin, MD
10
, Tricia T. Williams, MD
11
, Nate A. Woodin, LMFT
12
,
Lien C. Woodin, BSN
13
,IanK.T.Miller
14
, and Loren G. Miller, MD, MPH
15
1
Healthcare Partners Medical Group, Torrance, California, United States
2
Medstar Georgetown University Medical Center
3
Division of Neonatology, Children's Hospital of Oakland
4
Psychiatry, Case Western Reserve University
5
Department of Pediatrics, University of Connecticut
6
Cardiac Surgery Associates, Downers Grove, Illinois, United States
7
Aurora Health Care, Milwaukee, Wisconsin, United States
8
Division of Pulmonary and Critical Care Medicine, University of Wisconsin
9
Department of Family Medicine and Community Health, University of Wisconsin
10
Private Practice, Emergency and Intensive Care Medicine, Visby, Sweden
11
Endless Mountain Integrative Medicine, Troy, Pennsylvania, United States
12
Private Practice, Marriage and Family Therapy Portland, Maine, United States
13
Private Practice, Critical Care Nursing Portland, Maine, United States
14
Palos Verdes Peninsula High School, Rolling Hill Estates, California
15
Division of Infectious Diseases, Lundquist Institute for Biomedical Innovation at Harbor-UCLA Medical
Center, Torrance, California
Introduction: Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric
autoimmune neuropsychiatric disorder associated with streptococcal infections
(PANDAS) are severe but highly treatable postinfectious inflammatory brain
conditions. Despite published diagnostic and treatment guidelines for this condition,
there are long delays in obtaining appropriate care. The reasons for these delays are
poorly understood. We sought to identify health care system barriers to timely
treatment by examining cases of PANDAS/PANS occurring in children of health care
professionals. Method: We recruited families via e-mail request through the PANDAS
Physicians Network. Participating parents completed a structured questionnaire and
provided a written case description. Results: Eleven families completed data
collection, representing a broad spectrum of disease (child disease onset age 4–15, 7
males/4 females, mild to severe). Parents included 11 physicians, 2 mental health
This article was published Online First October 7, 2021.
Tricia T. Williams, MD https://orcid.org/0000-0001-
5706-0897
Loren G. Miller, MD, MPH https://orcid.org/0000-
0003-0487-1711
None of the authors received any funding related to the
content of the manuscript.
Angela W. Tang and Loren G. Miller contributed to study
conception, data collection, data analysis, and manuscript
preparation. Ian K. T. Miller contributed to data analysis, and
manuscript preparation. The remaining authors contributed to
data collection, data analysis, and manuscript preparation.
Correspondence concerning this article should be
addressed to Loren G. Miller, MD, MPH, 1124 West
Carson Street, Box 466, Torrance, CA 90502, United
States. Email: lgmiller@ucla.edu
477
Families, Systems, & Health
©2021 American Psychological Association 2021, Vol. 39, No. 3, 477–487
ISSN: 1939-0602 https://doi.org/10.1037/fsh0000602
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