Childrens Hospital Medical Center Of Akron

CHILDREN'S HOSPITALS GRADUATE MEDICAL EDUCATION PAYMENT PROGRAM

COMMUNITY PROJECT FUNDING/CONGRESSIONALLY DIRECTED SPENDING - CONSTRUCTION

INTEGRATING CLINICIAN, CAREGIVER AND PATIENT PRIORITIZED QUALITY DOMAINS FOR HOME-BASED PEDIATRIC HOSPICE AND PALLIATIVE CARE - CURRENT RESEARCH IN PEDIATRIC HOSPICE AND PALLIATIVE CARE FOCUSES ON INPATIENT HOSPICE AND PALLIATIVE CARE SETTINGS AND IS STILL LARGELY DRIVEN BY ADULT-BASED DATA AND PARADIGMS, INSUFFICIENTLY ADDRESSING CLINICALLY SIGNIFICANT NEEDS OF CHILDREN AND ADOLESCENTS. THE LONG-TERM GOAL IS TO DESIGN PEDIATRIC HOME-BASED HOSPICE AND PALLIATIVE CARE (PHBHPC) CARE SYSTEMS TAILORING HIGH-QUALITY, GOAL-CONCORDANT, PERSONALIZED CARE TO CHILDREN, ADOLESCENTS, AND FAMILIES. THE OVERALL OBJECTIVE OF THIS PROPOSAL IS TO DEVELOP A SINGLE SET OF PHBHPC QUALITY DOMAINS INTEGRATING NEWLY-IDENTIFIED, PATIENT-PRIORITIZED PERSPECTIVES WITH THOSE FROM CLINICIANS AND PARENTS. THE CENTRAL HYPOTHESIS IS THAT PEDIATRIC PATIENTS WILL USE DIFFERENT LANGUAGE TO DESCRIBE IMPORTANT ASPECTS OF THEIR CARE THAN PROVIDERS OR PARENTS. THIS HYPOTHESIS BUILDS ON THE TEAM’S PRIOR COLLABORATION, USING A DELPHI PROCESS THROUGH WHICH PHBHPC PROVIDERS IDENTIFIED TWO NOVEL DOMAINS: CONTINUITY OF CARE AND BEREAVEMENT. THIS TEAM’S SUBSEQUENT STUDY WITH PARENTS OF CHILDREN RECEIVING PHBHPC IDENTIFIED ANOTHER DOMAIN: COMPASSIONATE CARE. THE RATIONALE IS THAT THE PROPOSED STUDY PROVIDES THE MISSING DIMENSION OF CHILDREN THEMSELVES IN DEFINING PHBHPC, AND INTEGRATES THEIR VOICES WITH CAREGIVERS AND PROVIDERS TO INFORM BENCHMARKING AND QUALITY IMPROVEMENT, PROGRAM DEVELOPMENT AND EVALUATION. IN ORDER TO ACHIEVE THE OBJECTIVE, THE FOLLOWING THREE SPECIFIC AIMS WILL BE PURSUED: 1) ESTABLISH AND DEFINE FACTORS CHILDREN AND ADOLESCENTS IDENTIFY AS IMPORTANT IN PHBHPC; 2) EXTEND AND VALIDATE EXISTING PROVIDER AND CAREGIVER DATASETS TO MAXIMIZE REPRESENTATIVENESS AND MINIMIZE HISTORICAL THREAT; AND 3) INTEGRATE PATIENT-PRIORITIZED FACTORS WITH THOSE FROM PROVIDERS AND CAREGIVERS INTO A SINGLE DOCUMENT OF PHBHPC DOMAINS OF QUALITY. THE PROPOSED RESEARCH IS INNOVATIVE, IN THE APPLICANTS’ OPINION, BECAUSE IT REPRESENTS A SUBSTANTIVE DEPARTURE FROM THE STATUS QUO BY SHIFTING CURRENT RESEARCH PARADIGMS IN THREE WAYS. FIRST, THE PERSPECTIVES OF ALL STAKEHOLDERS ARE COLLECTED AND INTEGRATED: PHBHPC PATIENTS, PARENTS OR OTHER CAREGIVERS, AND PROVIDERS. SECOND, THE FOCUS IS ON PHBHPC RATHER THAN ON INPATIENT HOSPICE AND PALLIATIVE CARE. THIRD, THE GAPS IN POPULATIONS DESIGNATED BY NIH AS UNDER-STUDIED ARE ADDRESSED. THIS CONTRIBUTION IS EXPECTED TO BE SIGNIFICANT BECAUSE IT WILL BE THE FIRST TO STUDY PHBHPC QUALITY INTEGRATING ALL STAKEHOLDER INPUT – PATIENT, FAMILY, AND CLINICIAN – ENABLING IMPROVED QUALITY SCIENCE THROUGH BENCHMARKING AND DATA SHARING, PATIENT-REPORTED OUTCOMES MEASURE DEVELOPMENT, AND FUTURE RESEARCH TO CONNECT CARE DELIVERY TO HEALTH OUTCOMES.

THE CONVERGENCE INSUFFICIENCY TREATMENT TRIAL - ATTENTION AND READING TRIAL

IMPLEMENTATION OF INSTRUMENT-BASED VISION SCREENING IN PRIMARY CARE PEDIATRIC OFFICES: ENHANCING EARLY DETECTION OF SIGHT THREATENING DISORDERS WITHIN A CHILDREN'S HOSPITAL SYSTEM - THE HUMAN VISUAL SYSTEM IS NOT FULLY DEVELOPED AT BIRTH AND EXPERIENCES A MYRIAD OF CHANGES IN THE FIRST FEW YEARS OF LIFE ALONG THE ENTIRE VISUAL PATHWAY FROM THE BACK OF THE EYE TO THE CONNECTIONS IN THE BRAIN. ABNORMAL NEURAL DEVELOPMENT IN THE VISUAL CORTEX OF THE BRAIN CAN LEAD TO AMBLYOPIA, YIELDING REDUCED VISUAL ACUITY IN ONE EYE, RELATIVE TO THE OTHER EYE (MONOCULAR AMBLYOPIA); OR IN BOTH EYES, RELATIVE TO NORMAL VISION (BILATERAL AMBLYOPIA). IF LEFT UNTREATED, AMBLYOPIA CAN LEAD TO LIFELONG VISUAL IMPAIRMENT. VISION SCREENING DURING REPEATED WELL CHILD CHECKS IS AN INTEGRAL PART OF IDENTIFYING A CHILD AT RISK FOR AMBLYOPIA AND OTHER VISION DISORDERS. FROM NEWBORN THROUGH 30 MONTHS OF AGE, EVALUATION OF THE VISUAL SYSTEM IS BASED ON A RISK ASSESSMENT THAT INCLUDES: 1) FAMILY HISTORY OF EYE DISORDERS AND PARENTS’ OBSERVATIONS; 2) EXTERNAL INSPECTION OF THE EYES; 3) RED REFLEX TESTING TO DETECT OPACITY IN THE VISUAL AXIS OR DIFFERENT REFLEX INTENSITIES BETWEEN THE EYES; 4) PUPIL EXAMINATION; 5) OCULAR ALIGNMENT AND MOTILITY; 6) VISUAL FUNCTION, I.E. THE ABILITY TO FIXATE AND FOLLOW AN OBJECT. THE AMERICAN ACADEMY OF PEDIATRICS ADVOCATES ASSESSMENT OF VISUAL FUNCTION (RISK FACTOR #6) BY MEASURING MONOCULAR VISUAL ACUITY ONCE A CHILD CAN IDENTIFY OR MATCH SYMBOLS DISPLAYED ON A CHART, IDEALLY BEGINNING AT 3-YEARS OF AGE. HOWEVER, ONLY ABOUT ONE HALF OF 3-YEAR-OLDS AND ONE THIRD OF 4-YEAR-OLDS CAN COMPLETE THE NECESSARY VISUAL ACUITY ASSESSMENTS. WE IMPLEMENTED INSTRUMENT-BASED VISION SCREENING FOR 3-, 4- AND 5-YEAR WELL CHILD CHECKS AT 44 GENERAL PEDIATRIC OFFICES AFFILIATED WITH AKRON CHILDREN’S HOSPITAL BEGINNING IN APRIL 2021. SINCE THEN, WE HAVE DEMONSTRATED A SIGNIFICANT INCREASE IN THE RATE OF VISION SCREENING FOR THESE AGES FROM A LOW OF 6% FOR 3-YEAR-OLDS TO APPROXIMATELY 85% ACROSS ALL THREE AGES. WE HAVE MAINTAINED A DATABASE OF THE RESULTS FROM THE VISION SCREENINGS, INCLUDING PATIENTS WHO WERE SCREENED AND COMPLETED A FOLLOW-UP VISIT TO THE VISION CENTER. WE HAVE ACCESS TO THE RESULTS FROM COMPREHENSIVE EYE EXAMINATION FOR THE PATIENTS SEEN WITHIN AKRON CHILDREN’S HOSPITAL SYSTEM AS WELL AS THE RESULTS FROM THE VISION SCREENINGS. THE PURPOSE OF THIS PROPOSAL IS TO LEVERAGE THESE DATA SETS TO BETTER UNDERSTAND THE ACCURACY OF OUR CURRENT VISION SCREENING PROTOCOL AND REFERRAL CRITERIA. THE IMPACT OF ANY SCREENING PROGRAM CANNOT BE FULLY EVALUATED WITHOUT FOLLOW-UP INFORMATION: WE ARE ABLE TO DO JUST THAT WITH OUR EXTENSIVE TRACKING OF BOTH SCREENING AND EYE EXAMINATION OUTCOMES. THE ANALYSIS OF OUR REAL-WORLD DATA WILL PROVIDE A MODEL FOR EFFECTIVE IMPLEMENTATION OF INSTRUMENT-BASED VISION SCREENING FOR OTHER CHILDREN’S HOSPITAL SYSTEMS, IMPACTING EARLIER DETECTION OF VISION PROBLEMS IN CHILDHOOD.

PURPOSE: TO SUPPORT A RESEARCH AGENDA THAT WILL BE IMPLEMENTED BY THE NARRATIVE MEDICINE RESEARCH LAB.