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The Burden of Caring for a Child or Adolescent With Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): An
Jennifer Frankovich1,2,3, Collin McCloskey Leibold2,3, Cristan Farmer4
1Stanford University School of Medicine, Division of Pediatrics, Department of Pediatric Rheumatology, 700 Welch Rd, Ste 301, MC: 5896, Palo Alto, CA 94304. jfranko@stanford.edu.
Insights
Caregiver burden in pediatric acute-onset neuropsychiatric syndrome (PANS) is high during flares but decreases over time in a specialty clinic. Early treatment entry may improve caregiver outcomes for PANS patients.
Area of Science:
- Pediatric Neurology
- Neuropsychiatry
- Caregiver Support
Background:
- Pediatric acute-onset neuropsychiatric syndrome (PANS) presents significant challenges for patients and their families.
- Caregiver burden is a critical factor impacting the well-being of families managing chronic pediatric conditions.
- Understanding the longitudinal impact of PANS on caregivers is essential for developing effective support strategies.
Purpose of the Study:
- To examine the longitudinal association between PANS disease severity, duration of clinical treatment, and caregiver burden.
- To identify factors influencing caregiver burden in pediatric PANS patients.
- To inform clinical practice and support services for families affected by PANS.
Main Methods:
- Observational longitudinal cohort study at a multidisciplinary PANS clinic.
- Caregiver Burden Inventories (CBIs) collected from caregivers of pediatric PANS/PANDAS patients (n=94).
- Analysis of CBI scores in relation to disease flares, time in clinic, and time from PANS onset to treatment entry.
Main Results:
- Fifty percent of caregivers exceeded respite need thresholds during initial disease flares.
- PANS flares significantly increased caregiver burden scores (6.6 points).
- Each year in clinical treatment decreased caregiver burden scores (-3.5 points/year), and earlier clinic entry predicted greater improvement over time.
Conclusions:
- Caregivers of PANS patients experience substantial burden, exacerbated by disease severity and flares.
- Caregiver burden generally decreases with longer duration of clinical treatment at a specialty clinic.
- The observed decrease in burden may be independent of specific medical treatments, highlighting the importance of ongoing clinical support.
Objective:
To describe the longitudinal association between disease severity, time established in clinical treatment, and caregiver burden in a community-based patient population diagnosed with pediatric acute-onset neuropsychiatric syndrome (PANS).
Methods:
The study included an observational longitudinal cohort design, with Caregiver Burden Inventories (CBIs) collected between April 2013 and November 2016 at the Stanford PANS multidisciplinary clinic. Inclusion criteria for this study were as follows: pediatric patients meeting strict PANS/pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) diagnostic criteria (n = 187), having a caregiver fill out at least 1 complete CBI during a disease flare (n = 114); and having family who lives locally (n = 97). For longitudinal analyses, only patients whose caregiver had filled out 2 or more CBIs (n = 94 with 892 CBIs) were included. In the study sample, most primary caregivers were mothers (69 [71.1%] of 97), the majority of PANS patients were male (58 [59.8%] of 97), and mean age at PANS onset was 8.8 years.
Results:
In a patient's first flare tracked by the clinic, 50% of caregivers exceeded the caregiver burden score threshold used to determine respite need in care receiver adult populations. Longitudinally, flares, compared with quiescence, predicted increases in mean CBI score (6.6 points; 95% CI, 5.1 to 8.0). Each year established in clinic predicted decreased CBI score (-3.5 points per year; 95% CI, -2.3 to -4.6). Also, shorter time between PANS onset and entry into the multidisciplinary clinic predicted greater improvement in mean CBI score over time (0.7 points per year squared; 95% CI, 0.1 to 1.3). Time between PANS onset and treatment with antibiotics or immunomodulation did not moderate the relationship between CBI score and time in clinic.
Conclusions:
PANS caregivers suffer high caregiver burden. Neuropsychiatric disease severity predicts increased caregiver burden. Caregiver burden tends to decrease over time in a group of patients undergoing clinical treatment at a specialty PANS clinic. This decrease could be independent of clinical treatment.
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