Pandemic intake questionnaire to improve quality, effectiveness, and efficiency of outpatient neurologic and developmental care at the Kennedy Krieger institute during the COVID-19 pandemic

Pooja Vedmurthy; Connor Murray; Belinda Chen; Akua Asiedu; Kristin Baranano; Mihee Bay; Harolyn Belcher; Vera Burton; Charles Conlon; Amena Fine; Ryan Gill; Jacqueline Harris; Khaylynn Hart; Shannon Inches; Jennifer Johnson; Eboni Lance; Paul H Lipkin; Deepa U Menon; Tiffany McIntyre; Meghna Rajaprakash; Albert Recio; Harvey S Singer; Lindsay Smegal; Constance L Smith-Hicks; Hilary Vernon; Anna Maria Wilms Floet; Joyce Wong; Karina Yelin; Mary L O'Connor Leppert; T Andrew Zabel; Anne M Comi

doi:10.3389/fresc.2022.934558

Pandemic intake questionnaire to improve quality, effectiveness, and efficiency of outpatient neurologic and developmental care at the Kennedy Krieger institute during the COVID-19 pandemic

Front Rehabil Sci. 2022 Oct 6:3:934558. doi: 10.3389/fresc.2022.934558. eCollection 2022.

Authors

Pooja Vedmurthy^{1

2}, Connor Murray^{1

2}, Belinda Chen³, Akua Asiedu³, Kristin Baranano⁴, Mihee Bay^{2

3

5}, Harolyn Belcher^{2

4

5

6

7}, Vera Burton⁴, Charles Conlon⁵, Amena Fine^{1

4}, Ryan Gill^{1

3

4}, Jacqueline Harris^{2

4

5

8}, Khaylynn Hart^{1

2

9}, Shannon Inches^{2

10}, Jennifer Johnson^{1

2}, Eboni Lance^{1

2

4}, Paul H Lipkin^{2

3

5}, Deepa U Menon^{2

4

5

9}, Tiffany McIntyre^{1

2}, Meghna Rajaprakash^{2

4}, Albert Recio^{11

12}, Harvey S Singer^{2

4

5}, Lindsay Smegal^{1

2}, Constance L Smith-Hicks^{2

4}, Hilary Vernon^{5

12}, Anna Maria Wilms Floet^{2

5}, Joyce Wong^{2

3

5}, Karina Yelin^{3

5}, Mary L O'Connor Leppert^{1

2

3

5}, T Andrew Zabel^{8

13}, Anne M Comi^{1

2

4

5}

Affiliations

¹ Department of Neurology, Kennedy Krieger Institute, Baltimore, MD, United States.
² Department of Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, MD, United States.
³ Center for Development and Learning, Kennedy Krieger Institute, Baltimore, MD, United States.
⁴ Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, United States.
⁵ Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, United States.
⁶ Center for Diversity in Public Health Leadership Training, Kennedy Krieger Institute, Baltimore, MD, United States.
⁷ Office for Health Equity, Inclusion and Diversity, Kennedy Krieger Institute, Baltimore, MD, United States.
⁸ Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, United States.
⁹ Center for Autism and Related Disorders, Kennedy Krieger Institute, Baltimore, MD, United States.
¹⁰ International Center for Spinal Cord Injury, Kennedy Krieger Institute, Baltimore, MD, United States.
¹¹ Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, Baltimore, MD, United States.
¹² Department of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States.
¹³ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Abstract

Background: The COVID-19 pandemic uniquely affects patients with neurologic and developmental disabilities at the Kennedy Krieger Institute. These patients are at increased risk of co-morbidities, increasing their risk of contracting COVID-19. Disruptions in their home and school routines, and restrictions accessing crucial healthcare services has had a significant impact.

Methods: A Pandemic Intake questionnaire regarding COVID-19 related medical concerns of guardians of patients was distributed using Qualtrics. Data from May-December 2020 were merged with demographic information of patients from 10 clinics (Center for Autism and Related Disorders (CARD), Neurology, Epigenetics, Neurogenetics, Center for Development and Learning (CDL) Sickle Cell, Spinal Cord, Sturge-Weber syndrome (SWS), Tourette's, and Metabolism). A provider feedback survey was distributed to program directors to assess the effectiveness of this intervention.

Results: Analysis included responses from 1643 guardians of pediatric patients (mean age 9.5 years, range 0-21.6 years). Guardians of patients in more medically complicated clinics reported perceived increased risk of COVID-19 (p < 0.001) and inability to obtain therapies (p < 0.001) and surgeries (p < 0.001). Guardian responses from CARD had increased reports of worsening behavior (p = 0.01). Providers increased availability of in-person and virtual therapies and visits and made referrals for additional care to address this. In a survey of medical providers, five out of six program directors who received the responses to this survey found this questionnaire helpful in caring for their patients.

Conclusion: This quality improvement project successfully implemented a pre-visit questionnaire to quickly assess areas of impact of COVID-19 on patients with neurodevelopmental disorders. During the pandemic, results identified several major areas of impact, including patient populations at increased risk for behavioral changes, sleep and/or disruptions of medical care. Most program directors reported improved patient care as a result.

Keywords: SARS – CoV – 2; neurodevelomental disorders; pandemic (COVID-19); pediatrics - children; rehabilitation.

© 2022 Vedmurthy, Murray, Chen, Asiedu, Baranano, Bay, Belcher, Burton, Conlon, Fine, Gill, Harris, Hart, Inches, Johnson, Lance, Lipkin, Menon, McIntyre, Rajaprakash, Recio, Singer, Smegal, Smith-Hicks, Vernon, Wilms Floet, Wong, Yelin, Leppert, Zabel and Comi.