0000003024S
OVERVIEW. CHILDREN WITH MEDICAL COMPLEXITY (CMC), I.E., CHILDREN WITH MULTIPLE SEVERE CHRONIC CONDITIONS, HIGH RESOURCE USE, SEVERE FUNCTIONAL LIMITATIONS AND SUBSTANTIAL FAMILY-IDENTIFIED SERVICE NEEDS, ARE A MEDICALLY VULNERABLE POPULATION FOR THE DEVELOPMENT OF SEVERE COVID-19. AN ILLUSTRATIVE CMC IS A CHILD BORN MONTHS PREMATURELY WITH QUADRIPLEGIC CEREBRAL PALSY, SEIZURES, FEEDING AND BREATHING TUBES, 12 MEDICATIONS, AND 8 SPECIALISTS. OUR RESEARCH ILLUSTRATES CMC AS A SOCIALLY VULNERABLE POPULATION IN THE US, AS WELL, WITH OVER HALF LIVING IN POVERTY, 17% IN RUNDOWN HOUSING, AND 14% FOOD INSECURE - ALL SUBSTANTIALLY HIGHER RATES THAN NON-CMC. WE HAVE OBSERVED THAT CMC ARE DISPROPORTIONATELY FROM COMMUNITIES OF COLOR. CMC ACCOUNT FOR 1-5% OF THE PEDIATRIC POPULATION BUT OVER ONE-THIRD OF TOTAL CHILD HEALTH SPENDING, THE MAJORITY OF WHICH IS DUE TO HOSPITAL CARE. MEDICAL FRAGILITY PLACES CMC AT HIGH RISK FOR SEVERE COVID-19 DISEASE, INCLUDING HOSPITALIZATION AND DEATH. DECIDING TO SEND CMC TO SCHOOL POSES A MAJOR DILEMMA TO FAMILIES WANTING TO MINIMIZE SEVERE COVID-19 RISK. CMC REQUIRE A MEAN OF 52 HOURS/WEEK IN DIRECT CARE, AND EVEN 3-FT PHYSICAL DISTANCING IS NOT POSSIBLE WITH MOST DAILY NEEDS, E.G., ENTERAL TUBE NUTRITION AND MEDICATIONS, RESPIRATORY MEDICATIONS, DIAPERING/TOILETING, AND DIRECT MOBILITY ASSISTANCE (PUSHING A WHEELCHAIR). FROM OUR CLINICAL EXPERIENCE, MANY FAMILIES ARE OPTING TO KEEP CMC OUT OF SCHOOL DUE TO THESE CONCERNS; HOWEVER, THE PROPORTION OF CMC ATTENDING SCHOOL AND THE FACTORS INFLUENCING PARENT DECISIONS ABOUT RETURN TO SCHOOL ARE UNKNOWN. RECENT DATA FROM THE MADISON METROPOLITAN SCHOOL DISTRICT, WITH 95% RESPONSE RATE, REPORTED ONLY 64% OF PARENTS OF CHILDREN IN SPECIAL EDUCATION PLAN IN-PERSON ATTENDANCE, WITH SUBSTANTIAL VARIATION ACROSS SCHOOLS, AND LOWER RATES AMONG UNDER-REPRESENTED RACIAL, ETHNIC AND INCOME GROUPS. SCHOOL PERSONNEL ALSO FACE RISKS WHEN CMC ATTEND SCHOOL. THE DAILY NUMBER OF STAFF EXPOSURES PER CMC CAN BE HIGH BECAUSE MOST CMC DEPEND ON OTHERS FOR EACH ASPECT OF SCHOOL ATTENDANCE, E.G., TRANSPORTATION TO, FROM, AND WITHIN SCHOOL, MEDICAL CARE AND THERAPY, MEALS, TOILETING, AND INSTRUCTION ITSELF. INABILITY TO MAINTAIN PHYSICAL DISTANCING DURING CARE PLACES STAFF, CMC AND THEIR FAMILIES AT RISK. MOREOVER, WEARING MASKS MAY BE DIFFICULT OR IMPOSSIBLE FOR SOME CMC, AND CARE CAN INCLUDE AEROSOL GENERATING PROCEDURES THAT INCREASE RISK FOR COVID-19 TRANSMISSION (E.G., TRACHEOSTOMY CARE, NEBULIZER TREATMENTS, SUCTIONING, AND POSITIVE PRESSURE VENTILATION). DATA FROM NORTH CAROLINA SUGGESTS MOST SECONDARY TRANSMISSION AT SCHOOLS WAS FROM BREAKS IN MASK COMPLIANCE, A HIGH PROPORTION OF WHICH CAME FROM CHILDREN WITH SPECIAL HEALTHCARE NEEDS FOR WHOM MASK COMPLIANCE CAN BE AS LOW AS 50% FOR CHILDREN OUTSIDE MAINSTREAM CLASSES (BENJAMIN DK, PERSONAL COMMUNICATION). DESPITE THESE CHALLENGES, ACHIEVING IN-PERSON SCHOOL ATTENDANCE IS CRITICAL FOR CMC. COMPARED TO NON-CMC, ACADEMIC AND SOCIAL DEVELOPMENT FOR MOST CMC HINGES ON BEING AT SCHOOL. SEVERE INTELLECTUAL AND DEVELOPMENTAL DISABILITY IMPAIRS ONEÂ S ABILITY TO ENGAGE WITH ONLINE PLATFORMS. HEALTH-PROMOTING SERVICES DELIVERED AT SCHOOL, E.G., PHYSICAL, OCCUPATIONAL, AND SPEECH THERAPY, ARE LIKELY LESS EFFECTIVE WHEN DELIVERED VIRTUALLY. PARENTS OF CMC, ALREADY DISPROPORTIONATELY UNEMPLOYED DUE TO THEIR CHILDÂ S CARE NEEDS, EXPERIENCE ADDED EMPLOYMENT STRAIN WHEN THEIR CHILD IS OUT OF SCHOOL. OUR OBJECTIVE IS TO INCREASE SAFE IN-SCHOOL ATTENDANCE FOR CMC AND SCHOOL PERSONNEL THROUGH 3 COMPLEMENTARY APPROACHES. WE PROPOSE TO ESTABLISH THE FEASIBILITY OF HOME AND SCHOOL-BASED TESTING STRATEGIES FOR CMC (AIM 1), IDENTIFY PREDICTORS OF PARENTS OPTING FOR IN-PERSON SCHOOL (AIM 2), AND ESTABLISH A CONSENSUS SET OF STAKEHOLDER PRIORITIES TO FACILITATE SAFE SCHOOL ATTENDANCE FOR CMC (AIM 3).
ANN & Robert H Lurie Childrens Hospital Of Chicago
Project Grant OT2HD107558
$85.2k 7/18/23 0000003025S
 ¢ MANAGE LOCAL AND RELIANCE IRB, DATA USE AGREEMENTS, AND SUBAWARD PROCEDURES FOR SITE AND UW-MADISON  ¢ IDENTIFY, RECRUIT, CONSENT A GOAL OF N=100 PARTICIPANTS OVER 6 MONTHS BY 3/1/2023. PARTICIPANT IDENTIFICATION CAN OCCUR FROM ELECTRONIC HEALTH RECORDS OR PRIMARY CARE CLINIC POPULATIONS  ¢ PARTICIPANTS ARE CONSENTED INTO SURVEY COMPLETION EVERY 6 MONTHS FOR AT LEAST 2 YEARS, DATA SHARING, AND FUTURE CONTACT WITH CONSORTIUM  ¢ SUBMIT REQUESTED HEALTH CARE USE DATA TO THE DATA COORDINATING CENTER EVERY 6 MONTHS FOR AT LEAST 2 YEARS  ¢ OVERSEE RESEARCH STAFF AND LIVED EXPERIENCE PARTNER  ¢ RESPOND TO CONSORTIUM REQUESTS TO ADDRESS ANY DATA QUALITY OR RECRUITMENT SHORTFALLS  ¢ CALL NON-RESPONDING PARTICIPANTS TO ENCOURAGE DATA COLLECTION, ASSESS NEED FOR WITHDRAWAL, ETC.  ¢ NOTIFY DATA COORDINATING SITE (UW) OF PARTICIPANT STATUS CHANGES (E.G., CHILD DEATH, RELOCATION, REQUEST TO WITHDRAW, ETC).  ¢ ATTEND CONSORTIUM VIRTUAL MEETINGS (SITE PI, LIVED EXPERIENCE PARTNER,
University Of California, LOS Angeles
Project Grant OT2HD107558
$86.0k 4/23/24 0000003267S
 ¢ MANAGE LOCAL AND RELIANCE IRB, DATA USE AGREEMENTS, AND SUBAWARD PROCEDURES FOR SITE AND UW-MADISON  ¢ IDENTIFY, RECRUIT, CONSENT A GOAL OF N=100 PARTICIPANTS OVER 6 MONTHS BY 3/1/2024. PARTICIPANT IDENTIFICATION CAN OCCUR FROM ELECTRONIC HEALTH RECORDS OR PRIMARY CARE CLINIC POPULATIONS  ¢ PARTICIPANTS ARE CONSENTED INTO SURVEY COMPLETION EVERY 6 MONTHS FOR AT LEAST 2 YEARS, DATA SHARING, AND FUTURE CONTACT WITH CONSORTIUM  ¢ SUBMIT REQUESTED HEALTH CARE USE DATA TO THE DATA COORDINATING CENTER EVERY 6 MONTHS  ¢ OVERSEE RESEARCH STAFF AND LIVED EXPERIENCE PARTNER  ¢ RESPOND TO CONSORTIUM REQUESTS TO ADDRESS ANY DATA QUALITY OR RECRUITMENT SHORTFALLS  ¢ CALL NON-RESPONDING PARTICIPANTS TO ENCOURAGE DATA COLLECTION, ASSESS NEED FOR WITHDRAWAL, ETC.  ¢ NOTIFY DATA COORDINATING SITE (UW) OF PARTICIPANT STATUS CHANGES (E.G., CHILD DEATH, RELOCATION, REQUEST TO WITHDRAW, ETC).  ¢ ATTEND CONSORTIUM VIRTUAL MEETINGS (SITE PI, LIVED EXPERIENCE PARTNER, COORDINATOR), CONTRIBUTE TO RESEARCH, ANALYSES, DISSEMINATION, FUTURE GRANTS
University Of Texas Health Science Center At Houston
Project Grant OT2HD107558
$62.4k 12/12/23 0000003023S
 ¢ MANAGE LOCAL AND RELIANCE IRB, DATA USE AGREEMENTS, AND SUBAWARD PROCEDURES FOR SITE AND UW-MADISON  ¢ IDENTIFY, RECRUIT, CONSENT A GOAL OF N=100 PARTICIPANTS OVER 6 MONTHS BY 3/1/2023. PARTICIPANT IDENTIFICATION CAN OCCUR FROM ELECTRONIC HEALTH RECORDS OR PRIMARY CARE CLINIC POPULATIONS  ¢ PARTICIPANTS ARE CONSENTED INTO SURVEY COMPLETION EVERY 6 MONTHS FOR AT LEAST 2 YEARS, DATA SHARING, AND FUTURE CONTACT WITH CONSORTIUM  ¢ SUBMIT REQUESTED HEALTH CARE USE DATA TO THE DATA COORDINATING CENTER EVERY 6 MONTHS FOR AT LEAST 2 YEARS  ¢ OVERSEE RESEARCH STAFF AND LIVED EXPERIENCE PARTNER  ¢ RESPOND TO CONSORTIUM REQUESTS TO ADDRESS ANY DATA QUALITY OR RECRUITMENT SHORTFALLS  ¢ CALL NON-RESPONDING PARTICIPANTS TO ENCOURAGE DATA COLLECTION, ASSESS NEED FOR WITHDRAWAL, ETC.  ¢ NOTIFY DATA COORDINATING SITE (UW) OF PARTICIPANT STATUS CHANGES (E.G., CHILD DEATH, RELOCATION, REQUEST TO WITHDRAW, ETC).  ¢ ATTEND CONSORTIUM VIRTUAL MEETINGS (SITE PI, LIVED EXPERIENCE PARTNER, COORDINATOR), CONTRIBUTE TO RESEARCH, ANALYSES, DISSEMINATION, FUTURE GRANTS
Childrens Hospital Medical Center
Project Grant OT2HD107558
$86.0k 8/3/23