J Affect Disord. For patients at the Kennedy Krieger Institute, clinical care requires access to physical, occupational and speech therapy. This work was supported by funding provided by the Orokawa Foundation. The Center of Disease Control determined that patients with neurological conditions are high-risk and more susceptible to severe complications, when infected with COVID-19 (4). Impact of COVID-19 pandemic on utilisation of healthcare services: a systematic review. The COVID-Safety Venue Information provided is subject to change. Report. The Neurology clinic sees patients diagnosed with brain injury, leukodystrophies, Rett syndrome, stroke and epilepsy. We hypothesized that clinicians providing medical care during the pandemic would be assisted by this information. Comorbidities are risk factors for hospitalization and serious COVID-19 illness in children and adults with sickle cell disease. doi: 10.1111/jpc.15285, 4. Wear a mask in public when community transmission is high, if you are unvaccinated and/or at high risk of severe illness. Live agents are available: Monday - Friday 8am to 5pm EST If you have an urgent medical need, please reach out to your healthcare provider. Written informed consent from the participants legal guardian/next of kin was not required to participate in this study in accordance with the national legislation and the institutional requirements. Blood Adv. Odds ratios of significant predictors of pandemic intake Questionnaire responses. Health and wellbeing. This study reports worsened sleep in patients at CARD; previous research found patients with ADHD and ASD to report high rates of delays in bedtime, decreased sleep duration and increased sleep disorders (18). doi: 10.1182/bloodadvances.2021004288. Eight months after getting COVID-19, 15-year-old Chloe Devore is still working to get back to her normal self. ; National Coronavirus (COVID19) Health Information Line - 1800 020 080 (this number operates 24/7 - if you require translating or interpreting services, call 13 14 50). The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fresc.2022.934558/full#supplementary-material, 1. Bruni O, Breda M, Ferri R, Melegari MG. Changes in sleep patterns and disorders in children and adolescents with attention deficit hyperactivity disorders and autism spectrum disorders during the COVID-19 lockdown. The COVID-19 pandemic uniquely impacted the medical care of patients with neurodevelopmental disabilities. Providers addressed this concern by making referrals to other clinics. Those from more medically complicated clinics were more likely to report inability to obtain therapies (32% vs. 18%; p<0.001) and inability to obtain surgeries (9% vs. 3%; p<0.001). They face significant disruptions to home and school routines, that can cause further declines in health outcomes, and limitations in accessing necessary healthcare and educational services (2, 3), which can further exacerbate their neurodevelopmental impairments. Five out of six found the Pandemic Intake questionnaire helpful in their care of their patients. This work was supported by funding provided by the Orokawa Foundation. Some people don't finish that. (2021) 57(5):6316. CA Notify, Google and Apple's exposure notification system, alerts you if you were in close contact with someone who tests positive for COVID-19 while preserving your privacy. The complex, inter-related factors, unique to patients with neurodevelopmental disorders influence the impact of the COVID-19 pandemic. BALTIMORE Johns Hopkins Medicine and the Kennedy Krieger Institute have partnered together to host a drive-thru COVID-19 vaccination clinic. The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fresc.2022.934558/full#supplementary-material, National Library of Medicine More information and support. Inaccessibility to services like physical, occupational, and speech therapies can result in a decline in patient health (6). Binary logistic regression identified significant predictors of guardian response; the statistical model included sex, age, race, and clinic type as covariates. Pandemic intake questionnaires were accompanied by text (Supplementary Appendix A) which explained to parents that providers would use the data to inform their care at their upcoming visit, and that de-identified information collected could be analyzed. But opting out of some of these cookies may have an effect on your browsing experience. Questions asked guardians to identify a worsening, improvement, or no change in quality of life due to the COVID-19 pandemic. To purchase a reprint of this article, contact [emailprotected]. Free text boxes were included to allow the taker to expand on their concerns. There was a 0.993 cumulative decrease in reports of difficulty accessing therapies with each increase in age by month. J Appl Psychol. (2021) 11(9):1139. doi: 10.3390/brainsci11091139, Keywords: pandemic (COVID-19), pediatrics - children, rehabilitation, SARS CoV 2, neurodevelomental disorders, Citation: Vedmurthy P, Murray C, Chen B, Asiedu A, Baranano K, Bay M, Belcher H, Burton V, Conlon C, Fine A, Gill R, Harris J, Hart K, Inches S, Johnson J, Lance E, Lipkin PH, Menon DU, McIntyre T, Rajaprakash M, Recio A, Singer HS, Smegal L, Smith-Hicks CL, Vernon H, Wilms Floet AM, Wong J, Yelin K, Leppert MLO, Zabel TA and Comi AM (2022) 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. Why does COVID-19 affect patients with spinal cord injury milder? There was a 0.993 cumulative decrease in reports of difficulty accessing therapies with each increase in age by month. Read the latest COVID-19 advice from our medical and public health experts. Providers responded by making more in-person and virtual appointments available to increase access. This website uses cookies to improve your experience while you navigate through the website. doi: 10.1136/bmjopen-2020-045343, 3. 2 Departments of Physical Medicine and Rehabilitation, The Johns Hopkins University School of Medicine and the Kennedy Krieger Institute, Baltimore, MD, United States. This study reports worsened sleep in patients at CARD; previous research found patients with ADHD and ASD to report high rates of delays in bedtime, decreased sleep duration and increased sleep disorders (18). It includes checklists, resources, and a case study that state and local health departments, event . Disruptions in their home and school routines, and restrictions accessing crucial healthcare services has had a significant impact. West Health Institute and Johns Hopkins University School of Medicine (2020). We successfully implemented a pre-visit Pandemic Intake questionnaire to quickly and systematically inform provider awareness of COVID-19 related patient concerns; the majority of program directors reported that this information helped them provide optimal care. Comorbidities are risk factors for hospitalization and serious COVID-19 illness in children and adults with sickle cell disease, Risk factors for COVID-19 mortality among privately insured patients. No formal analysis to attempt to demonstrate these differences was done. This study has important limitations. Regarding sleep, 11.7% (n=191) indicated the child's sleep worsened during the pandemic (Table3). Kennedy Krieger Institute will begin testing consented students for COVID-19 in May at all four of its schools as part of a study that will help to determine . To assess the utility of the Pandemic Intake questionnaire, a provider feedback survey was developed and sent to the seven program directors. View more interviews in the video archive. 6 a.m. to 10 p.m. Monday. Table 2. Language assistance is available. sharing sensitive information, make sure youre on a federal Clinic type was a significant predictor; age, sex, and race were not. Over 4,000 patients (Figure1) were seen across these programs, during the time of data collection (May 2020 through December 2020). A significant main effect for time (early vs. later pandemic) was only observed in the ability to access surgeries over time (p=0.027); more respondents reported difficulty accessing surgeries between May and August (39.4%) than between September and December (13.6%). Kennedy Krieger Institute, an internationally known, non-profit organization located in the greater Baltimore/Washington, D.C. region, transforms the lives of more than 25,000 individuals a year . For new appointments, we will advise how the appointment will be delivered and provide easy instructions for all telephone or video appointments. This study suggests that patients from the Sturge-Weber clinic and patients that were Black had higher reports of worsening appetite. Give Light and the People Will Find Their Own Way. If you already have an appointment, theres no need to cancel. These cookies will be stored in your browser only with your consent. But many don't about it, and that's why Kennedy Krieger is now trying to get the word out about it in schools. SWS, sturge weber syndrome; CARD, center for autism and related disorders; other, metabolism, epigenetics, sickle cell clinic. By: Daily Record Staff Those close to him say it . It is now doing 1,200 TeleHealth sessions a day. Twenty percent (n=327) of guardians reported worsening in their child's behavior during COVID-19 (model correctly classified 79.9% of the sample, 2 (14, N=1,637)=36.8, p=0.001). The complex, inter-related factors, unique to patients with neurodevelopmental disorders influence the impact of the COVID-19 pandemic. Masi A, Mendoza Diaz A, Tully L, Azim SI, Woolfenden S, Efron D, et al. To increase cell size for statistical analyses, the Epigenetics, Metabolism and Sickle Cell clinics were combined to the category of Other, and American Indian/Alaska Native, Native Hawaiian, Other, Other Pacific Islander, and Hispanic races and ethnicities were also grouped together. PV drafted the manuscript. The impact of telehealth implementation on underserved populations and no-show rates by medical specialty during the COVID-19 pandemic. EClin Med. 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). How has Kennedy Krieger responded to the COVID-19 outbreak? This project received acknowledgement from the Johns Hopkins Institutional Review Board. Table 4. the contents by NLM or the National Institutes of Health. For patients at the Kennedy Krieger Institute, clinical care requires access to physical, occupational and speech therapy. The central helpline number: 011-23978046. doi: 10.1007/s10803-020-04577-2, 6. Rametta SC, Fridinger SE, Gonzalez AK, Xian J, Galer PD, Kaufman M, et al. For accommodation requests for the MN Community Testing and Vaccination sites, call the Minnesota Department of Health COVID-19 Public Hotline at 1-833-431-2053 between 9 a.m. and 5 p.m. on Monday, Wednesday, and Friday; 9 a.m. - 7 p.m. on Tuesday and Thursday. Received: 2 May 2022; Accepted: 18 August 2022;Published: 6 October 2022. Guardians of patients seen at the SWS center (9%) were 2.4 times more likely to report worsened appetite then CDL patients (5%). Measures implemented by program directors to address COVID-19 concerns brought up in the pandemic intake questionnaire. Guardians of patients from more medically complicated clinics were significantly more likely to report perceived increased risk of contracting COVID-19, and the inability to access surgeries and therapies. Responses were analyzed in relation to sex, age, race/ethnicity and clinic. 134 COVID. Race and age were significant predictors; sex and clinic type were not. The Center of Disease Control determined that patients with neurological conditions are high-risk and more susceptible to severe complications, when infected with COVID-19 (4). There was a 1.003 cumulative increase of reports in worsened mood with each increase in age by month (p=0.01). Program directors worked to address these concerns and there was a significant decrease in the number of respondents unable to access surgeries in the later months of the pandemic (September to December). Responses on the Pandemic intake questionnaire were dichotomized; for example Do you consider the patient to be at increased risk for COVID-19 related complications?, yes and unsure responses were coded as an affirmative response and no was coded as a negative response. 5.7% reported that this was due to asthma/other lung disease and 0.7 reported that was due to heart disease. doi: 10.1016/j.jpeds.2020.12.060, 7. Monday to Friday from 7am to 7pm (Sydney time). A Kennedy who worked on Jared Kushner's COVID-19 task force said he was asked to distort a coronavirus prediction to make the outbreak seem less bad. Most directors (66.7%) made more referrals than before COVID-19 pandemic to address these concerns; including referrals to increase training children to tolerate masks, care coordination for resources, and to emergency department/ crisis center for behavioral concerns. 2-3 hours long, exhausting, and hard. At Kennedy KriegersSchool Programs, the goal is to test 650asymptomaticstudents, teachers,and school staffeach week. An official website of the United States government. It is designed for people with disabilities who are 12 years of age and older, as well as their families and caregivers. BMJ Open. To find out about more about your symptoms, check out the healthdirect Australia COVID-19 Symptom and Antiviral Eligibility Checker. The studies involving human participants were reviewed and approved by Johns Hopkins Institutional Review Board. Mutluer T, Doenyas C, Aslan Genc H. Behavioral implications of the COVID-19 process for autism Spectrum disorder, and Individuals comprehension of and reactions to the pandemic conditions. Returning the questionnaire was voluntary and not required for the visit. Clinic type, age and race were significant predictors; sex was not. VAERS is an unreliable source, and the agencies that run it say its reports . A total of 3,153 questionnaires were returned with a 33.6% response rate (N=1,643; see Table1). This assessed whether the directors deemed the Pandemic Intake questionnaire helpful in the care of patients during the pandemic, and how they addressed COVID-related concerns. Get vaccinated. Most people can manage COVID-19 at home with support from their GP. Phone: 13 42 68 Coronavirus helpline. Why does COVID-19 affect patients with spinal cord injury milder? Asbury K, Fox L, Deniz E, Code A, Toseeb U. They face significant disruptions to home and school routines, that can cause further declines in health outcomes, and limitations in accessing necessary healthcare and educational services (2, 3), which can further exacerbate their neurodevelopmental impairments. The Kennedy Krieger Institute approaches neurodevelopmental disorders through a multi-professional treatment lens, allowing for expansive integration of changes and improvements in the quality of care. Help job seekers learn about the company by being objective and to the point. 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. Downvote. Perhaps due to their increased risk of co-morbidities (1), parents of patients with neurodevelopmental disorders frequently reported concerns for increased risk of contracting COVID-19. This de-identified database was stored on a secure Institute shared drive, and analyzed within IBM SPSS 27. 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. Franciosi EB, Tan AJ, Kassamali B, Leonard N, Zhou G, Krueger S, et al. Program directors made more appointments available and provided COVID-19 education to their patients. Get information about 111 callbacks. At that point, the Kennedy Krieger Institute was ready to give the go-ahead to welcoming thousands to its biggest fundraiser the Festival of Trees at the Maryland State Fairgrounds. No formal analysis to attempt to demonstrate these differences was done. If your enquiry is related to coronavirus (COVID-19) health concerns or current guidelines, please call the dedicated COVID-19 hotline 1800 675 398.Interstate or international callers (+613) 9096 9000.. To report breaches of restrictions, please contact Victoria Police on 131 444 or make a report online (2020) 13(3):100942. doi: 10.1016/j.dhjo.2020.100942, PubMed Abstract | CrossRef Full Text | Google Scholar, 2. Pandemic Intake questionnaire response data were de-identified, linked with Contact Serial Number, and merged with corresponding demographic information from the healthcare record system of EPIC. (2021) 5(13):271724. "It's a multi-disciplinary clinic so it's not just one doctor seeing one kid," said Rybczynski. Impact of the COVID-19 pandemic on the well-being of children with neurodevelopmental disabilities and their parents, Scoping review of prevalence of neurologic comorbidities in patients hospitalized for COVID-19. . Are you a private company interested in assisting the COVID-19 response? It is designed for people with disabilities who are 12 years of age and older, as well as their families and caregivers. Add an answer. Murphy A, Pinkerton LM, Bruckner E, Risser HJ. Most providers reported that changes in sleep (66.7%) and behavior (66.7%) were the most frequent COVID-19 related concerns for their patients. Race, age, and clinic type were significant predictors; sex was not. Impact of COVID-19 pandemic on utilisation of healthcare services: a systematic review. 7 Articles, This article is part of the Research Topic, https://doi.org/10.3389/fresc.2022.934558, https://www.frontiersin.org/articles/10.3389/fresc.2022.934558/full#supplementary-material, Creative Commons Attribution License (CC BY). This approach, and Pandemic Intake Questionnaire, may prove useful as the COVID-19 pandemic situation evolves, and for future pandemics, both at the Kennedy Krieger Institute and at other similar medical facilities. Results of provider feedback survey. Clinicians initiated the use of a questionnaire to ask guardians about COVID-19 related concerns prior to clinical visits. Finally, 4% (n=66) of guardians indicated difficulty accessing surgical services during the pandemic. COVID-19. Calvo E, Corbacho-Alonso N, Sastre-Oliva T, Nunez E, Baena-Galan P, Hernandez-Fernandez G, et al. While the overall process of disseminating questionnaires was the same across programs, there were differences in the details of execution, like, in how many days before the clinic appointment the questionnaires were sent, which may have impacted participation. Aggression, hypersensitivity and behavioral problems are issues in patients with autism spectrum disorder. "Longer COVID syndrome is a problem that happens after that and has a very complex number of symptoms such as fatigue, dizziness, headaches, weakness, also things like brain fog," said Dr. Suzanne Rybczynski, Associate Chief Medical Officer at Kennedy Krieger. 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. Twenty-three percent (n=200) of guardians of White children indicated increased difficulty accessing therapies; Black and African American respondents (14%) were less likely to report difficulty accessing therapies. Odds ratios of significant predictors of pandemic intake Questionnaire responses. Telemedicine is a safe and satisfactory alternative to in-person appointments and encourages patients to discuss their concerns relating to COVID-19 risk (13). The Port Authority airports - Newark Liberty, LaGuardia, John F. Kennedy International, New York Stewart International and Teterboro were among the first and is the largest airport system to earn Health and Safety Accreditations from the world's leading airport trade organization, Airports Council International in November.. And we are thrilled to share, all five of the Port Authority . Respondents from the Tourette's (8%), Spinal Cord (12%), and Sturge Weber syndrome (17%) clinic were 3.867.37 time more likely to report difficulty in accessing surgeries compared to respondents from CDL (3%) (Table2). In the medically more complicated clinics (Table3), patients were more likely to be treated with several medications simultaneously, have been hospitalized for seizures, surgeries, and other medical issues, and were more likely to be dependent on medical equipment such as wheelchairs, ventilators, and pumps. . Federal government websites often end in .gov or .mil. Fully vaccinated is two shots of Pfizer or Moderna or one shot of the Johnson & Johnson COVID-19 vaccine. The statistical model correctly classified 95% of the sample, 2 (14, N=1,627)=28.2, p=0.013). The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. We hypothesized that clinicians providing medical care during the pandemic would be assisted by this information. Uncover why Kennedy Krieger is the best company for you. If you have COVID-19 you should try to stay at home. 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. We aimed to systematically provide essential COVID-19 pandemic related information to clinicians before their visits with the family, and improve providers ability to deliver high quality care (8). Providers reported that this process helped identify additional patient concerns specifically with social interactions and school services. Guardians from the Neurogenetics (38%), Other clinics (27%), and the Spinal Cord clinic (72%) were 2.6312.92 times more likely to report difficulty accessing therapies as compared to 17% (n=206) of those from CDL. Clinicians viewed the completed questionnaire before or during the visit and addressed COVID-related concerns during the appointment. Mucalo L, Brandow AM, Dasgupta M, Mason SF, Simpson PM, Singh A, et al. For the patients, families, students and staff of Kennedy Krieger Institute. Attestation to vaccination and symptom screening should be included in registration. A provider feedback survey was distributed to program directors to assess the effectiveness of this intervention. These patients are at increased risk of co-morbidities, increasing their risk of contracting COVID-19. Wash your hands often! Six of 7 program directors responded to a survey assessing their experience utilizing the Pandemic Intake survey (Table4). Treats nurses unfairly . The Institute's Health Information Management department received the completed questionnaires through automated emails from Qualtrics, and uploaded them to the EPIC health management system. (2021) 11(3):e045343. We aimed to systematically provide essential COVID-19 pandemic related information to clinicians before their visits with the family, and improve providers ability to deliver high quality care (8). Kennedy Krieger Institute selected this as a representative review. Analyzing 2,589 child neurology telehealth encounters necessitated by the COVID-19 pandemic. Ethnicity and clinical outcomes in COVID-19: a systematic review and meta-analysis, Telerehabilitation in the age of COVID-19: an opportunity for learning health system research. Over 4,000 patients (Figure1) were seen across these programs, during the time of data collection (May 2020 through December 2020). Asbury K, Fox L, Deniz E, Code A, Toseeb U. Makary M. Risk factors for COVID-19 mortality among privately insured patients. A Kennedy's Crusade Against Covid Vaccines Anguishes Family and Friends. COVID-19 vaccinations; Find out about other NHS services on NHS.UK. We successfully implemented a pre-visit Pandemic Intake questionnaire to quickly and systematically inform provider awareness of COVID-19 related patient concerns; the majority of program directors reported that this information helped them provide optimal care. 12. The Institute's Health Information Management department received the completed questionnaires through automated emails from Qualtrics, and uploaded them to the EPIC health management system. Program directors made more appointments available and provided COVID-19 education to their patients. The statistical model correctly categorized 80.4% of the sample, 2 (14, N=1644)=121.5, p<0.001). These patients are at increased risk of co-morbidities, increasing their risk of contracting COVID-19. Hancock issued the original stay-at-home order for Denver a little after 2 p.m. Monday. You must have the heart, patience, understanding, and grit for this work. Table 1. Impact of COVID-19 pandemic on mental health in the general population: a systematic review. This toolkit aims to help health departments prevent the spread of COVID-19 at multi-day events that are expected to draw large numbers of people. Please tell a nurse, doctor, or other healthcare professional as soon as possible if you: We appreciate your understanding in this matter. Please note: The call center cannot access COVID-19 testing results. More information can be found via the links below: Patients who have recovered from the COVID-19 virus are more likely to have long-term physical, cognitive and emotional effects that linger after recovery. Meetings should be conducted virtually whenever possible, especially during times of increased transmission. The East Baltimore institution received $1 million through the . 2021 CBS Broadcasting Inc. All Rights Reserved. Reports for difficulty in accessing surgeries decreased over time. Our rehabilitation clinic is for children and adolescents under age 21 who have recovered from the virus but need additional support to regain lost neurological and physical function as a result of the illness. Track your flight by Flight Number or by Departure and Arrival Airports Disruptions in their home and school routines, and restrictions accessing crucial healthcare services has had a significant impact. Virtual learning, increase stress, and altered routines impacted the sleep and appetite patterns of children during the pandemic (17). Text GOT5 to 741741. However, these other data were not from children with neurodevelopmental disorders. In addition, researchers seek to assess perspectives about COVID-19 testing, and vaccines among parents of students with disabilities who do not return to in-person learning. For testing inquiries or results, please contact your health care provider.