How Did the COVID-19 Pandemic Affect Children with PANS/PANDAS and Their Families?

What you need to know

• The COVID-19 pandemic negatively impacted many aspects of life for children with PANS/PANDAS and their families, including symptom severity, social relationships, and academic skills.
• Children with PANS/PANDAS who contracted COVID-19 experienced new or worsened psychiatric symptoms, particularly mood changes, obsessive-compulsive behaviors, and anxiety.
• Telehealth was widely used and generally preferred by families, especially for children with milder PANS/PANDAS symptoms.
• Caregivers reported high levels of stress, relationship dissatisfaction, and burnout during the pandemic.

What are PANS and PANDAS?

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) are conditions that cause sudden and severe onset of obsessive-compulsive symptoms, eating restrictions, and other neuropsychiatric symptoms in children.

PANDAS specifically refers to cases triggered by strep infections, while PANS can be triggered by various infections or other factors. These conditions can significantly impact a child’s daily functioning and quality of life.

How the study was conducted

Researchers surveyed 254 self-reported caregivers of children with PANS/PANDAS between February and June 2021. The anonymous online survey collected information about:

• Demographics
• PANS/PANDAS symptoms and severity
• Impacts of the pandemic on various aspects of life
• Use of telehealth services
• COVID-19 vaccination intentions
• Caregiver mental health and stress levels

The study aimed to understand how the COVID-19 pandemic affected this unique population of children and their families.

Impacts on PANS/PANDAS symptoms and daily life

Many caregivers reported that the pandemic negatively impacted their child’s PANS/PANDAS symptoms. On average, children’s obsessive-compulsive symptoms were in the moderate range of severity during the study period.

The pandemic also affected other aspects of children’s lives:

• Friendships: 61.6% reported a somewhat or strongly negative impact
• Relationships with extended family: 44.4% reported a somewhat or strongly negative impact
• Participation in hobbies: 69.2% reported a somewhat or strongly negative impact
• Academic skills: 47% reported a somewhat or strongly negative impact

Interestingly, 43.9% of caregivers felt the pandemic had a somewhat or strongly positive impact on their relationship with their child. This suggests that despite the challenges, some families may have grown closer during this difficult time.

Effects of COVID-19 infection

Of the children in the study who had confirmed or suspected COVID-19 infections, many experienced new or worsened psychiatric symptoms:

• Mood changes: 58.3% of confirmed cases, 54.8% of suspected cases
• Obsessive-compulsive symptoms: 41.7% of confirmed cases, 58.1% of suspected cases
• Anxiety: 50% of confirmed cases, 58.1% of suspected cases
• Sensory sensitivities: 41.7% of confirmed cases, 54.8% of suspected cases

This highlights the potential for COVID-19 to exacerbate symptoms in children with PANS/PANDAS. However, it’s important to note that no children in the study died from COVID-19 infections.

Access to care and telehealth use

The pandemic created some challenges in accessing care for PANS/PANDAS:

• 35.9% of caregivers found it somewhat or much harder to obtain care
• 48.5% experienced no difference in their ability to receive care
• 14.7% found it somewhat or much easier to obtain care

Telehealth services were widely used, with 83.6% of children receiving some PANS/PANDAS care via telehealth during the pandemic. Caregivers generally viewed telehealth positively:

• 78.7% felt telehealth made it easier to obtain care
• 28.7% said they would prefer telehealth for future care
• 60.7% said their preference for telehealth would depend on the type of appointment

Telehealth was most preferred for medication management appointments, followed by primary care visits. Interestingly, caregivers of children with milder PANS/PANDAS symptoms were more likely to report that telehealth made access to care easier.

Caregiver mental health and stress

The study found that many caregivers of children with PANS/PANDAS experienced significant stress and mental health challenges during the pandemic:

• 76.8% reported more stress in the home compared to pre-pandemic levels
• Caregivers reported mild to moderate symptoms of anxiety, stress, and depression on average
• The mean score on a measure of caregiver burden indicated a high risk of burnout
• Most caregivers reported relationship dissatisfaction with their romantic/domestic partners

These findings highlight the importance of supporting not just the children with PANS/PANDAS, but also their caregivers who may be struggling with the demands of managing their child’s condition during a global crisis.

COVID-19 vaccination intentions

The study also examined caregivers’ intentions to vaccinate their children against COVID-19:

• 25.9% were not planning to vaccinate their child
• 29.9% were planning to vaccinate their child
• 44.2% were unsure

Two factors were found to predict whether a caregiver was not planning to vaccinate their child:

1. Living in an area with a higher proportion of Republican voters in the 2020 presidential election
2. The child not being up-to-date on other childhood vaccinations

This suggests that both local cultural factors and previous vaccination practices may influence COVID-19 vaccination decisions for children with PANS/PANDAS.

Conclusions

• The COVID-19 pandemic created significant challenges for children with PANS/PANDAS and their families, impacting symptoms, daily life, and access to care.
• Telehealth services were widely used and generally viewed positively, especially for children with milder symptoms. This may inform future care delivery models for this population.
• Caregivers of children with PANS/PANDAS experienced high levels of stress and mental health challenges, highlighting the need for support services for the whole family.
• COVID-19 vaccination intentions varied among caregivers and were influenced by both local cultural factors and previous vaccination practices.

This study provides valuable insights into the experiences of children with PANS/PANDAS and their families during the COVID-19 pandemic. It highlights areas where additional support and resources may be needed, as well as potential opportunities for improving care delivery through telehealth services. As the pandemic continues to evolve, ongoing research will be crucial to understanding and addressing the unique needs of this population.