End Diagnostic Overshadowing

NCT06608758 | Recruiting

• 1 other identifier: R01HD116320
• Study Type: observational
• Target: 120,000
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this study is to address the critical issue of diagnostic overshadowing by applying the Collective Impact Model40 to co-produce our End Diagnostic Overshadowing program with academic, health systems, health professional, PWDs, family members, and community stakeholders. Through this work, we will identify and address mechanisms that contribute to diagnostic overshadowing and diagnostic errors among people with disabilities. The main questions to answer are whether knowledge about diagnostic errors and confidence will improve with health care providers and professionals involved in diagnostic provesses, whether developed algorithms to identify patients at risk of diagnpstic error will be used, whether there will be change in time to diagnostic evaluation for PWD from the specified 5 population groups and with the specified diagnoses prone to error, and whether changes in usage of CPT Evaluation and Management codes will occur.

Conditions

Disabilities Multiple

Keywords

Disabilities; Diagnostic error; Diagnostic overshadowing; Algorithms

Outcome Measures

Primary Outcomes (4)

• Descriptive data on use of electronic record (EHR) decision supports and prompts/alerts

  After implementation of EHR prompts/alerts and decision supports related to diagnostic error, descriptive data will be collected and analyzed on usage.

  1.5, 2.5, and 3.5 years

• Complexity distribution of Evaluation and Management (E/M) Current Procedural Technology (CPT) codes

  The percentage of each complexity score for Current Procedural Technology (CPT) Evaluation and Management (E/M) codes will be measured by setting (ED, outpatient, inpatient, preventive care) for differences using Fisher'ss exact tests for patients with disabilities (PWD) aged 3-89 years old with specific disabilities (major mobility impairments, mental health concerns, severe visual impairments/ blindness, severe hearing loss/deafness, and IDD) versus patients aged 3-89 years old without the specific disabilities.

  4 years

• Knowledge questionnaires

  Knowledge questionnaires will be developed related to algorithms to detect people with disabilities from 5 specified groups at risk of diagnostic overshadowing, EHR prompts/alerts and decisions supports. Pre and post, the percentage of correct answers will be calculated and compared using ANCOVA.

  3.5 years

• Scores on Safer DX Checklist

  The Safer Dx Instrument uses a Likert scale to rate the degree of agreement with statement regarding diagnostic processes. Higher scores may indicate a greater likelihood of a diagnostic error or "missed opportunity" for diagnosis.

  4 years

Secondary Outcomes (1)

• Mock tracer qualitative analysis

  Years 4 and 5

Other Outcomes (1)

• Interaction effects pre and post diagnostic processes

  3.5 years

Study Arms (2)

Patients with disabilities

Cases with disabilities are patients aged 3 - 89 years old with one or more of 26 diagnoses prone to error and and have the following secondary (or primary) diagnoses (using associated ICD-10 codes) Mobility impairments: Spinal cord diseases, Spinal cord injuries, Injury to spinal cord nerves, Multiple sclerosis, Cerebral palsy, Dependence on enabling machines or devices, Need for caregiver related to mobility impairments Severe Vision impairments: Severe Hearing impairments: Mental health: Person history mental and behavioral disorders, Major Depression, Severe bipolar disorder, Severe schizophrenia, Paranoia, Psychosis Intellectual Disabilities: Autism

Behavioral: Electonic health record prompts with education

Patients without disabilities

Patients without disabilities are patients age 3-89 with one or more of 26 diagnoses prone to error and without the following secondary (or primary) diagnoses: Mobility impairments: Spinal cord diseases, Spinal cord injuries, Injury to spinal cord nerves, Multiple sclerosis, Cerebral palsy, Dependence on enabling machines or devices, Need for caregiver related to mobility impairments Severe Vision impairments: Severe Hearing impairments: Mental health: Person history mental and behavioral disorders, Major Depression, Severe bipolar disorder, Severe schizophrenia, Paranoia, Psychosis Intellectual Disabilities: Autism

Other: Standard of care

Interventions

Electonic health record prompts with education BEHAVIORAL

1. . A baseline description of patients aged ≥ 3 to 89 years old with one or more of 26 diagnoses prone to error was developed to compare cases of patients with specific disabilities (major mobility impairments, severe mental health concerns, severe visual impairments, severe hearing loss, and IDD) versus cases of patients without the specific disabilities who have these diagnoses. 2. Initial manual chart reviews on PWDs with specific diagnoses of sepsis and metastatic breast cancer with two of the disability groups, patients with intellectual disabilities and/or autism and with severe mental illness were done. 3. We analyzed mammogram usage and factors related to usage among women ≥ 40 years old with IDD and with severe mental health issues 3\) We are working on algorithms to identify providers whose female patients age \> 40 years old to encourage outreach and to identify the patients needing mammograms for outreach. Developing educational materials for both providers and patients.

Patients with disabilities

Standard of care OTHER

Patients without disabilities will receive standard care related to electronic health record prompts, alerts, and decision supports.

Patients without disabilities

Eligibility Criteria

• Age: 3 Years - 89 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Cases: * Cases without disabilities are patients 3 - 89 years old without the following principal and secondary diagnoses (using associated ICD-10 codes): * Cases with disabilities are patients aged 3 - 89 years old with the following Principal and secondary diagnoses (using associated ICD-10 codes): * Mobility impairments: Spinal cord diseases, Spinal cord injuries, Injury to spinal cord nerves, Multiple sclerosis, Cerebral palsy, Dependence on enabling machines or devices, Need for caregiver related to mobility impairments * Severe Vision impairments * Severe Hearing impairments * Mental health: Person history mental and behavioral disorders, Major Depression, Severe bipolar disorder, Severe schizophrenia, Paranoia, Psychosis * Intellectual Disabilities * Autism

You may qualify if:

• Patients aged 3-89 who received billed charges

You may not qualify if:

• Patients under age 3 or over age 89.
• Patients with secondary diagnosis of dementia as the population is already known to be at increased risk of diagnostic error

Sponsors & Collaborators

• Rush University Medical Center: lead
• St. John Fisher College: collaborator
• University of Minnesota: collaborator

Study Sites (1)

Rush University Medical Center

Chicago, Illinois, 60612, United States

RECRUITING

Related Publications (22)

• 163. Fram S. The constant comparative analysis method outside of grounded theory. Qualitative report. 2015. doi: 10.46743/2160-3715/2013.1569. 164. McMillan SS, Kelly F, Sav A, et al. Using the nominal group technique: How to analyse across multiple groups. Health Serv Outcomes Res Method. 2014;14(3):92-108. https://link.springer.com/article/10.1007/s10742-014-0121-1. doi: 10.1007/s10742-014-0121-1. 165. Krueger RA, Casey MA. Focus groups. 5th ed. Thousand Oaks: SAGE Publications, Incorporated; 2014. https://ebookcentral.proquest.com/lib/[SITE_ID]/detail.action?docID=7106821. Version 5/21/25 Page 63 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 166. Abery B, Ticha R, Bathje M, Ailey S. Participatory planning and decision making: Themes in the education of health professionals in the health of people with intellectual and developmental disabilities. . 167. Reiser RA, Dempsey JV. Trends and issues in instructional design and technology. Fourth edition ed. New York, NY: Pearson; 2018.

  RESULT

• 156. How Rochester regional health is raising health equity in healthcare Rochester Regional Health Web site. https://hive.rochesterregional.org/2023/02/health-equity-rochester. Accessed November 21, 2023. 158. AMA: New 2023 CPT code set includes burden-reducing revisionsAmerican Medical Association Press releases Web site. https://www.ama-assn.org/press-center/press-releases/ama- new-2023-cpt-code-set-includes-burden-reducing-revisions. Updated 2022. Accessed November 21, 2023. 159. Skinner TR, Scott IA, Martin JH. Diagnostic errors in older patients: A systematic review of incidence and potential causes in seven prevalent diseases. International journal of general Version 5/21/25 Page 62 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 medicine. 2016;9(Issue 1):137-146. https://www.ncbi.nlm.nih.gov/pubmed/27284262. doi: 10.2147/IJGM.S96741. 160. Wright N, Anthony D, McArdle K, Ailey S. Case study in tracer methodology: CARE OF PATIENTS WHO ARE BLIND OR VISUALLY IMPAIREDJoint Commission : The Source. 2018;16(8):1. 161. Augustine JJ. Latest data reveal the ED's role as hospital admission gatekeeper. ACEPNow: The Official Voice of Emergency Medicine. 2019. https://www.acepnow.com/article/latest-data- reveal-the-eds-role-as-hospital-admission- gatekeeper/#:~:text=In%202018%2C%20inpatient%20units%20were%20the%20site%20of,70% 20percent%20of%20hospital%20inpatients%20processed%20through%20it.. 162. Miles MB. Qualitative data analysis. Edition 3 ed. Los Angeles: Sage; 2014. http://www.econis.eu/PPNSET?PPN=1605448125.

  RESULT

• 6692. doi: 10.1352/1934-9556-61.4.326. 148. Stancliffe RJ, Pettingell SL, Bershadsky J, Houseworth J, Tichá R. Community participation and staying home if you want: US adults with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities. 2022;35(5):1199-1207. doi: 10.1111/jar.13014. 149. Pettingell SL, Houseworth J, Tichá R, Kramme JED, Hewitt AS. Incentives, wages, and retention among direct support professionals: National core indicators staff stability survey. Intellectual and developmental disabilities. 2022;60(2):113-127. doi: 10.1352/1934-9556-60.2.113. 150. Tichá R, Hewitt A, Nord D, Larson S. System and individual outcomes and their predictors in services and support for people with IDD. Intellect Dev Disabil. 2013;51(5):298-315. doi: 10.1352/1934-9556-51.5.298. 151. Qian X, Tichá R, Stancliffe R. Contextual factors associated with implementing active support in community group homes in the united states: A qualitative investigation. J Policy Pract Intellect Disabil. 2017;14(4):332-340. doi: 10.1111/jppi.12204. Version 5/21/25 Page 61 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 152. RTC/OM briefs. Rehabilitation Research and Training Center on HCBS Outcome Measurement Web site. https://publications.ici.umn.edu/rtcom/briefs/brief-one-involving- stakeholders-to-address-challenges-in-hcbs-mesure-development. 153. IDD health equityIDD Health Equity Web site. https://iddhealthequity.org/. 154. Among the nation's best. RUSH System for Health Web site. https://www.rush.edu/. 155. Ansell DA, Oliver-Hightower D, Goodman LJ, Lateef OB, Johnson TJ. Health equity as a system strategy: The rush university medical center framework. NEJM catalyst innovations in care delivery. 2021;2(5). doi: 10.1056/CAT.20.0674.

  RESULT

• 143. Stancliffe RJ, Tichá R, Pettingell SL, Houseworth J, Bershadsky J. Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis. Journal of applied research in intellectual disabilities. 2023;36(4):859-870. https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.13103. doi: 10.1111/jar.13103. 144. Cherry E, Stancliffe RJ, Emerson E, Tichá R. Policy implications, eligibility, and demographic characteristics of people with intellectual disability who access self-directed funding in the united states. Intellectual and developmental disabilities. 2021;59(2):123-140. http://eric.ed.gov/ERICWebPortal/detail?accno=EJ1291832. doi: 10.1352/1934-9556-59.2.123. 145. Stancliffe RJ, Pettingell SL, Tichá R, Houseworth J. Mothers and fathers with intellectual and developmental disabilities who use US disability services: Prevalence and living arrangements. Journal of intellectual disability research. 2022;66(3):297-305. https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12912. doi: 10.1111/jir.12912. 146. Stancliffe RJ, Tichá R, Larson SA, Hewitt AS, Nord D. Responsiveness to self-report interview questions by adults with intellectual and developmental disability. Intellectual and developmental disabilities. 2015;53(3):163-181. https://www.ncbi.nlm.nih.gov/pubmed/26107851. doi: 10.1352/1934-9556-53.3.163. 147. Stancliffe RJ, Pettingell SL, Houseworth J, Tichá R. Participation and companions for socially inclusive community activities by U.S. adults with intellectual and developmental disabilities. Intellectual and developmental disabilities. 2023;61(4):326-344. https://www.ncbi.nlm.nih.gov/pubmed/37536692. doi: 10.1352/1934-9556-61.4.326.

  RESULT

• 135. Bernadette Mazurek Melnyk, PhD, APRN-CNP, FAANP, FNAP, FAAN, Pamela Lusk, DNP, RN, PMHNP-BC, FAANP, FAAN / Bernadette Mazurek Melnyk, PhD, APRN-CNP, FAANP, FNAP, FAAN, Pamela Lusk, DNP, RN, PMHNP-BC, FAANP, FAAN. A practical guide to child and adolescent mental health screening, evidence-based assessment, intervention, https://www.perlego.com/book/2633732/a-practical-guide-to-child-and-adolescent-mental- health-screening-evidence-based-assessment-intervention-and-health-promotion-pdf. 136. Wehmeyer ML, Abery BH. Self-determination and choice. Intellect Dev Disabil. 2013;51(5):399-411. 137. Tichá R, Abery B, Šiška J. Editorial: Improving the quality of outcome measurement for adults with disabilities receiving community-based services. Frontiers in rehabilitation sciences. 2023;4:1163522. https://www.ncbi.nlm.nih.gov/pubmed/37064597. doi: 10.3389/fresc.2023.1163522. 138. Roberts MA, Abery BH. A person-centered approach to home and community-based services outcome measurement. Frontiers in rehabilitation sciences. 2023;4:1056530. https://www.ncbi.nlm.nih.gov/pubmed/36817716. doi: 10.3389/fresc.2023.1056530. 139. Wehmeyer ML, Abery BH. Self-determination and choice. Intellectual and developmental disabilities. 2013;51(5):399-411. http://eric.ed.gov/ERICWebPortal/detail?accno=EJ1015845. doi: 10.1352/1934-9556-51.5.399. 140. Stancliffe RJ, Wehmeyer ML, Shogren KA, Abery BH. Choice, preference, and disabilityhttps://doi.org/10.1007/978-3-030-35683-5. Updated 2020. 141. Abery B, Anderson LL. Preference, choice, and self-determination in the healthcare context. In: Stancliffe RJ, Wehmeyer MI, Shagrean KA, Abery BH, eds. Choice, preference, and disability: Promoting self-determination across the lifespan; 2020:155-175. 142. Houseworth J, Stancliffe RJ, Tichá R. Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities. Research in developmental disabilities. 2018;83:77-90 https://dx.doi.org

  RESULT

• 126. Weinberg DB, Cooney-Miner D, Perloff JN. Analyzing the relationship between nursing education and patient outcomes. J NURS REGUL. 2012;3(2):4-10. doi: 10.1016/S2155-8256(15)30212-X. 127. Weinberg DB, Cooney-Miner D, Perloff JN, Babington L, Avgar AC. Building collaborative capacity: Promoting interdisciplinary teamwork in the absence of formal teams. Med Care. 2011;49(8):716-723. doi: 10.1097/MLR.0b013e318215da3f. 128. Dobrowolska B, McGonagle I, Jackson C, et al. Clinical practice models in nursing education: Implication for students' mobility. Int Nurs Rev. 2015;62(1):36-46. doi: 10.1111/inr.12162. 129. Dobrowolska B, McGonagle I, Kane R, et al. Patterns of clinical mentorship in undergraduate nurse education: A comparative case analysis of eleven EU and non-EU countries. Nurse Educ Today. 2016;36:44-52. doi: 10.1016/j.nedt.2015.07.010. 130. Weinberg DB, Cooney-Miner D, Perloff JN, Bourgoin M. The gap between education preferences and hiring practices. Nurs Manage. 2011;42(9):23-28. doi: 10.1097/01.NUMA.0000399676.35805.f8. 131. Weinberg DB, Avgar AC, Sugrue NM, Cooney-Miner D. The importance of a high-performance work environment in hospitals. Health Serv Res. 2013;48(1):319-332. doi: 10.1111/j.1475-6773.2012.01438.x. 132. Cooney Miner D. Transforming the nursing workforce in new york: The value of baccalaureate preparation in nursing. J NY STATE NURSES ASSOC. 2013;43(2):17-20. 133. Golisano institute administrationSt. John Fisher University Web site. https://www.sjf.edu/institutes/golisano-institute/faculty-and-staff/. 134. Melnyk BM, Brown HE, Jones DC, Kreipe R, Novak J. Improving the mental/psychosocial health of US children and adolescents: Outcomes and implementation strategies from the national KySS summit. Journal of pediatric health care. 2003;17(6 Suppl):1. doi: 10.1016/j.pedhc.2003.08.002.

  RESULT

• developmental disabilities . 2022. 118. Ailey SH, Johnson TJ, Fogg L, Friese TR. Factors related to complications among adult patients with intellectual disabilities hospitalized at an academic medical center. Intellect Dev Disabil. 2015;53(2):114-119. doi: 10.1352/1934-9556-53.2.114 [doi]. 119. Ailey SH, Johnson T, Fogg L, Friese TR. Hospitalizations of adults with intellectual disability in academic medical centers. Intellect Dev Disabil. 2014;52(3):187-192. doi: 10.1352/1934-9556-52.3.187 Version 5/21/25 Page 55 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 120. Ailey SH, Johnson TJ, Cabrera A. Evaluation of factors related to prolonged lengths of stay for patients with autism with or without intellectual disability. J Psychosoc Nurs Ment Health Serv. 2019:1-6. doi: 10.3928/02793695-20190205-01 [doi]. 121. Wirtz J, Ailey SH, Hohmann S, Johnson T. Patient outcomes associated with tailored hospital programs for intellectual disabilities. The American journal of managed care. 2020;26(3):e84-e90. https://www.ncbi.nlm.nih.gov/pubmed/32181620. doi: 10.37765/ajmc.2020.42640. 122. Chakravarthy V, Ryan MJ, Jaffer A, et al. Efficacy of a transition clinic on hospital readmissions. Am J Med. 2018;131(2):178-184.e1. doi: S0002-9343(17)30934-8 [pii]. 123. Altfeld SJ, Shier GE, Rooney M, et al. Effects of an enhanced discharge planning intervention for hospitalized older adults: A randomized trial. Gerontologist. 2013;53(3):430- 440. doi: 10.1093/geront/gns109 [doi]. 124. Johnson TJ, Patel AL, Jegier BJ, et al. Cost of morbidities in very low birth weight infants. J Pediatr. 2013;162(2):243-249.e1. doi: 10.1016/j.jpeds.2012.07.013. 125. Ailey SH, Johnson TJ, Cabrera A. Evaluation of factors related to prolonged lengths of stay for patients with autism with or without intellectual disability. J Psychosoc Nurs Ment Health Serv. 2019;57(7):17-22. doi: 10.3928/02793695-20190205-01

  RESULT

• 107. Ailey SH, Hart R. Hospital program for working with adult clients with intellectual and developmental disabilities. Intellect Dev Disabil. 2010;48(2):145-147. 108. Ailey SH, Brown PJ, Ridge CM. Improving hospital care of patients with intellectual and developmental disabilities. Disabil Health J. 2017;10(2):169-172. 109. Ailey SH, Johnson T, Fogg L, Friese TR. Hospitalizations of adults with intellectual disability in academic medical centers. Intellect Dev Disabil. 2014;52(3):187-192. 110. Ailey SH, Johnson TJ, Fogg L, Friese TR. Factors related to complications among adult patients with intellectual disabilities hospitalized at an academic medical center. Intellect Dev Disabil. 2015;53(2):114-119. 111. Friese T, Ailey S. Specific standards of care for adults with intellectual disabilities. Nurs Manag (Harrow). 2015;22(1):32-37. doi: 10.7748/nm.22.1.32.e1296 [doi]. 112. Ailey S.H., Christopher BA, Ramson, K., Schmidt, N., & Lapin, A. Tracer methodology 101: Using mock tracers to evaluate care of patients with intellectual disabilities, part 2. . The Source. 2016;14(1):4-6. 113. Ailey S.H., Christopher BA, Ramson, K., Schmidt, N., & Lapin, A. Tracer methodology 101: Using mock tracers to evaluate care of patients with intellectual disabilities, part 1. The Source. 2015;13(12):4-6. 114. Wright N, Anthony D, McArdle KJ, Ailey SH. Case study in tracer methodology: Care of patients who are blind or visually impaired. Joint Commission: The Source. ;16(8):4-6. 115. Ailey SH, Smeltzer S, Marks B, et al. Partnering to transform health outcomes with persons with intellectual disabilities (PATH-PWIDD) year three. 2023. 116. Ailey SH, Brown H. Will proposed ACGME requirements have consequences for kids with autism . 2023. 117. Ailey SH, Brown H. Hospitals can be dangerous places for people with intellectual and developmental disabilities . 2022.

  RESULT

• 97. Diaz T, Strong KL, Cao B, et al. A call for standardised age-disaggregated health data. The Lancet. Healthy longevity. 2021;2(7):e436-e443. https://dx.doi.org/10.1016/S2666- 7568(21)00115-X. doi: 10.1016/S2666-7568(21)00115-X. 98. Cameron AC, Trivedi PK. Microeconometrics using stata. volume II: Nonlinear models and causal inference methods. In: Multinomial models. second edition. College Station TX: Stata Press; 2022. 99. Whitaker RG, Sperber N, Baumgartner M, et al. Coincidence analysis: A new method for causal inference in implementation science. Implementation Science. 2020;15(1):1-108. https://www.ncbi.nlm.nih.gov/pubmed/33308250. doi: 10.1186/s13012-020-01070-3. Version 5/21/25 Page 52 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 100. Baumgartner M. Regularity theories reassessed. Philosophia. 2008;36(3):327-354. https://link.springer.com/article/10.1007/s11406-007-9114-4. doi: 10.1007/s11406-007-9114-4. 101. Baumgartner M, Falk C. Boolean difference-making: A modern regularity theory of causation. The British journal for the philosophy of science. 2023;74(1):171-197. https://www.journals.uchicago.edu/doi/abs/10.1093/bjps/axz047. doi: 10.1093/bjps/axz047. 102. Wolfe L, Chisolm MS, Bohsali F. Clinically excellent use of the electronic health record: Review. JMIR Human Factors. 2018;5(4):e10426. https://10.2196/10426. doi: 10.2196/10426. 103. Kania J, Kramer M. Collective impact. Stanford Social Innovation Review. 2011;9(1). https://ssir.org/articles/entry/collective_impact. 105. Ailey SH, Brown P, Friese TR, Dugan S. Building a culture of inclusion: Disability as opportunity for organizational growth and improving patient care. J Nurs Adm. 2016;46(1):9-11. doi: 10.1097/NNA.0000000000000286 [doi]. 106. Society for nurses with disabilities: National organization of nurses with disabilitiesNurses with disabilities Web site. https://www.nurseswithdisabilities.org/2011/02/national-organization- of-nurses-with.html.

  RESULT

• 88. Turakhia P, Combs B. Using principles of co-production to improve patient care and enhance value. AMA J Ethics. 2017;19(11):1125-1131. doi: journalofethics.2017.19.11.pfor1-1711 89. Rycroft-Malone J, Burton CR, Bucknall T, Graham ID, Hutchinson AM, Stacey D. Collaboration and co-production of knowledge in healthcare: Opportunities and challenges. Int J Health Policy Manag. 2016;5(4):221-223. doi: 10.15171/ijhpm.2016.08 [doi]. 90. Participation of organisations of persons with disabilities in development programmes and policies: IDA global survey initial reportInternational Disability Alliance. 2019. 91. Rycroft-Malone J, Burton CR, Wilkinson J, et al. Collective action for implementation: A realist evaluation of organisational collaboration in healthcare. Implement Sci. 2016;11:17-z. doi: 10.1186/s13012-016-0380-z [doi]. 92. Cox R, Molineux M, Kendall M, Tanner B, Miller E. Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: Results of a scoping review. BMJ Qual Saf. 2022;31(2):134-146. doi: 10.1136/bmjqs-2020-012729 [doi]. 93. Lewis DR, Johnson DR, Braddock DL. Participatory evaluation for special education and rehabilitation. Washington DC: American Association on Mental Retardation; 2000. Version 5/21/25 Page 51 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 94. Lenette C. Participatory action research. New York, NY: Oxford University Press; 2022. https://www.gbv.de/dms/bowker/toc/9780197644966.pdf. 10.1093/oso/9780197512456.001.0001. 95. Wehmeyer M. Decision making and self-determination. In: Khemka I, Hickson L, eds Decision making by individuals with intellectual and developmental disabilities. positive psychology and disability series. Springer; 2021. 96. Stancliffe RJ, Abery BH, Smith J. Personal control and the ecology of community living settings: Beyond living-unit size and type. American journal of mental retardation. 2000;105(6):431-454. http://eric.ed.gov

  RESULT

• 82. Tsai CC, Starren J. Patient participation in electronic medical records. JAMA : the journal of the American Medical Association. 2001;285(13):1765. http://dx.doi.org/10.1001/jama.285.13.1765-JMS0404-3-1. doi: 10.1001/jama.285.13.1765- JMS0404-3-1. 83. Molina MF, Cash RE, Carreras-Tartak J, et al. Applying crisis standards of care to critically ill patients during the COVID-19 pandemic: Does race/ethnicity affect triage scoring? Journal of the American College of Emergency Physicians Open. 2021;2(4):e12502-n/a. https://onlinelibrary.wiley.com/doi/abs/10.1002/emp2.12502. doi: 10.1002/emp2.12502. 84. Meyer A, Murphy D, Al-Mutairi A, et al. Electronic detection of delayed test result follow- up in patients with hypothyroidism. JGIM: Journal of General Internal Medicine. 2017;32(7):753-759. https://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=123732180&authtype=sso& custid=cls59&site=ehost-live. doi: 10.1007/s11606-017-3988-z. 85. Medford-Davis L, Park E, Shlamovitz G, et al. Diagnostic errors related to acute abdominal pain in the emergency department. Emerg Med J. 2016;33(4):253-259. https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=114060423&authtype=sso& custid=cls59&site=ehost-live. doi: 10.1136/emermed-2015-204754. 86. Murphy DR, Wu L, Thomas EJ, Forjuoh SN, Meyer AND, Singh H. Electronic trigger-based intervention to reduce delays in diagnostic evaluation for cancer: A cluster randomized controlled trial. J Clin Oncol. 2015;33(31):3560-3567. https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=110557165&authtype=sso& custid=cls59&site=ehost-live. doi: 10.1200/JCO.2015.61.1301. 87. Wood DS, Tracey TJG. A brief feedback intervention for diagnostic overshadowing. Train Educ Prof Psychol. 2009;3(4):218-225. Version 5/21/25 Page 50 of 64ORA: 23111505-IRB01 https://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2009-21175- 004&authtype=sso&custid=cls59&site=ehost-live. doi: 10.1037/a0016577.

  RESULT

• NEJM197301252880406. doi: 10.1056/NEJM197301252880406. 75. Bouchard C, Jean O. Tracer methodology: An appropriate tool for assessing compliance with accreditation standards? The International journal of health planning and management. 2017;32(4):e299-e315. https://onlinelibrary.wiley.com/doi/abs/10.1002/hpm.2376. doi: 10.1002/hpm.2376. 76. Siewert B. The joint commission ever-readiness: Understanding tracer methodology. Current problems in diagnostic radiology. 2018;47(3):131-135. https://dx.doi.org/10.1067/j.cpradiol.2017.05.002. doi: 10.1067/j.cpradiol.2017.05.002. Version 5/21/25 Page 48 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 77. The Joint Commission. How to conduct a mock tracer. 78. Zazove P, McKee M, Schleicher L, et al. To act or not to act: Responses to electronic health record prompts by family medicine clinicians. Journal of the American Medical Informatics Association : JAMIA. 2017;24(2):275-280. https://www.ncbi.nlm.nih.gov/pubmed/28158766. doi: 10.1093/jamia/ocw178. 79. Dixit RA, Boxley CL, Samuel S, Mohan V, Ratwani RM, Gold JA. Electronic health record use issues and diagnostic error: A scoping review and framework. Journal of patient safety. 2023;19(1):e25-e30. https://www.ncbi.nlm.nih.gov/pubmed/36538341. doi: 10.1097/PTS.0000000000001081. 80. Krevat SA, Samuel S, Boxley C, et al. Identifying electronic health record contributions to diagnostic error in ambulatory settings through legal claims analysis. JAMA Network Open. 2023;6(4):e238399. http://dx.doi.org/10.1001/jamanetworkopen.2023.8399. doi: 10.1001/jamanetworkopen.2023.8399. 81. Nelson H. Epic EHR integration aims to boost clinical decision support, CGP . EHR Intelligence Web site. https://www.ehrintelligence.com/news/epic-ehr-integration-aims-to-boost-clinical-decision-support-cgp.

  RESULT

• 68. Simon VC, Tucker NJ, Balabanova A, Parry JA. The accuracy of hip fracture data entered into the national surgical quality improvement program (NSQIP) database. Eur J Orthop Surg Traumatol. 2023;33(5):1691-1695. https://link.springer.com/article/10.1007/s00590-022-03341- 9. doi: 10.1007/s00590-022-03341-9. 69. Giardina TD, Hunte H, Hill MA, Heimlich SL, Singh H, Smith KM. Defining diagnostic error: A scoping review to assess the impact of the national academies' report improving diagnosis in health care. Journal of patient safety. 2022;18(8):770-778. https://www.ncbi.nlm.nih.gov/pubmed/35405723. doi: 10.1097/PTS.0000000000000999. 70. American Medical Association. Evaluation and management (E/M) coding. Version 5/21/25 Page 47 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 71. Chen K, Zhang C, Jackson HB. Relative billing complexity of in-person versus telehealth outpatient encounters. Journal of evaluation in clinical practice. 2023;29(6):887-892. https://onlinelibrary.wiley.com/doi/abs/10.1111/jep.13905. doi: 10.1111/jep.13905. 72. Bhardwaj A. The impact of training on documentation of intellectual and developmental disabilities as a secondary condition: Health systems management master's project . [Masters]. Rush University College of Health Sciences; 2021. 73. Bilotta I, Tonidandel S, Liaw WR, et al. Examining linguistic differences in electronic health records for diverse patients with diabetes: Natural language processing analysis. JMIR medical informatics. 2024;12:e50428. https://www.ncbi.nlm.nih.gov/pubmed/38787295. doi: 10.2196/50428. 74. Kessner DM, Kalk CE, Singer J. Assessing health quality-the case for tracers. The New England journal of medicine. 1973;288(4):189-194. http://dx.doi.org/10.1056/NEJM197301252880406. doi: 10.1056/NEJM197301252880406.

  RESULT

• 61. Singh H, Mushtaq U, Marinez A, et al. Developing the safer dx checklist of ten safety recommendations for health care organizations to address diagnostic errors. Joint Commission journal on quality and patient safety. 2022;48(11):581-590. https://dx.doi.org/10.1016/j.jcjq.2022.08.003. doi: 10.1016/j.jcjq.2022.08.003. 62. Singh H, Khanna A, Spitzmueller C, Meyer AND. Recommendations for using the revised safer dx instrument to help measure and improve diagnostic safety. Diagnosis. 2019;6(4):315- 323. http://www.degruyter.com/doi/10.1515/dx-2019-0012. doi: 10.1515/dx-2019-0012. 63. Kapadia P, Zimolzak AJ, Upadhyay DK, et al. Development and implementation of a digital quality measure of emergency cancer diagnosis. Journal of clinical oncology. 2024;42(21):2506- 2515. https://ovidsp.ovid.com/ovidweb.cgi?T=JS&NEWS=n&CSC=Y&PAGE=fulltext&D=ovft&DO =10.1200/JCO.23.01523. doi: 10.1200/JCO.23.01523. Version 5/21/25 Page 46 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 64. Al-Mutairi A, Meyer AND, Thomas EJ, et al. Accuracy of the safer dx instrument to identify diagnostic errors in primary care. J GEN INTERN MED. 2016;31(6):602-608. https://link.springer.com/article/10.1007/s11606-016-3601-x. doi: 10.1007/s11606-016-3601-x. 65. Hirsch JA, Leslie-Mazwi TM, Nicola GN, et al. Current procedural terminology; a primer. Journal of NeuroInterventional Surgery. 2015;7(4):309-312. http://dx.doi.org/10.1136/neurintsurg-2014-011156. doi: 10.1136/neurintsurg-2014-011156. 66. Dotson P. CPT ® codes: What are they, why are they necessary, and how are they developed? Advances in wound care (New Rochelle, N.Y.). 2013;2(10):583-587. https://www.ncbi.nlm.nih.gov/pubmed/24761332. doi: 10.1089/wound.2013.0483. 67. CPT® overview and code approval American Medical Association. 2023.

  RESULT

• 45. Wislocki KE, Zalta AK. Assessing the existence of trauma-related diagnostic overshadowing in adult populations. Psychological trauma. 2023. https://www.ncbi.nlm.nih.gov/pubmed/37053403. doi: 10.1037/tra0001484. Version 5/21/25 Page 43 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 46. Kostiuk M, Burns B. Trauma assessment. National Library of Medicine Web site. https://www.ncbi.nlm.nih.gov/books/NBK555913/. Updated 2023. 47. McNally P, Taggart L, Shevlin M. Trauma experiences of people with an intellectual disability and their implications: A scoping review. Journal of applied research in intellectual disabilities. 2021;34(4):927-949. https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12872. doi: 10.1111/jar.12872. 48. Forkey H, Szilagyi M, Kelly ET, Duffee J. Trauma-informed care. Pediatrics (Evanston). 2021;148(2):1. https://www.ncbi.nlm.nih.gov/pubmed/34312292. doi: 10.1542/peds.2021- 052580. 49. Lin P, Daly AT, Olchanski N, et al. Dementia diagnosis disparities by race and ethnicity. Medical care. 2021;59(8):679-686. https://search.proquest.com/docview/2549684438. doi: 10.1097/MLR.0000000000001577. 50. Gallegos A, Dudovitz R, Biely C, et al. Racial disparities in developmental delay diagnosis and services received in early childhood. Academic pediatrics. 2021;21(7):1230-1238. https://dx.doi.org/10.1016/j.acap.2021.05.008. doi: 10.1016/j.acap.2021.05.008. 51. Goyal MK, Chamberlain JM, Webb M, et al. Racial and ethnic disparities in the delayed diagnosis of appendicitis among children. Academic emergency medicine. 2021;28(9):949-956. https://onlinelibrary.wiley.com/doi/abs/10.1111/acem.14142. doi: 10.1111/acem.14142. 52. Cho HL. Can intersectionality help lead to more accurate diagnosis? American journal of bioethics. 2019;19(2):37-39. Version 5/21/25 Page 44 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 https://www.tandfonline.com/doi/abs/10.1080/15265161.2018.1557279. doi: 10.1080/15265161.2

  RESULT

• 45. Wislocki KE, Zalta AK. Assessing the existence of trauma-related diagnostic overshadowing in adult populations. Psychological trauma. 2023. https://www.ncbi.nlm.nih.gov/pubmed/37053403. doi: 10.1037/tra0001484. Version 5/21/25 Page 43 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 46. Kostiuk M, Burns B. Trauma assessment. National Library of Medicine Web site. https://www.ncbi.nlm.nih.gov/books/NBK555913/. Updated 2023. 47. McNally P, Taggart L, Shevlin M. Trauma experiences of people with an intellectual disability and their implications: A scoping review. Journal of applied research in intellectual disabilities. 2021;34(4):927-949. https://onlinelibrary.wiley.com/doi/abs/10.1111/jar.12872. doi: 10.1111/jar.12872. 48. Forkey H, Szilagyi M, Kelly ET, Duffee J. Trauma-informed care. Pediatrics (Evanston). 2021;148(2):1. https://www.ncbi.nlm.nih.gov/pubmed/34312292. doi: 10.1542/peds.2021- 052580. 49. Lin P, Daly AT, Olchanski N, et al. Dementia diagnosis disparities by race and ethnicity. Medical care. 2021;59(8):679-686. https://search.proquest.com/docview/2549684438. doi: 10.1097/MLR.0000000000001577. 50. Gallegos A, Dudovitz R, Biely C, et al. Racial disparities in developmental delay diagnosis and services received in early childhood. Academic pediatrics. 2021;21(7):1230-1238. https://dx.doi.org/10.1016/j.acap.2021.05.008. doi: 10.1016/j.acap.2021.05.008. 51. Goyal MK, Chamberlain JM, Webb M, et al. Racial and ethnic disparities in the delayed diagnosis of appendicitis among children. Academic emergency medicine. 2021;28(9):949-956. https://onlinelibrary.wiley.com/doi/abs/10.1111/acem.14142. doi: 10.1111/acem.14142. 52. Cho HL. Can intersectionality help lead to more accurate diagnosis? American journal of bioethics. 2019;19(2):37-39. https://www.tandfonline.com/doi/abs/10.1080/15265161.2018.1557279. doi: 10.1080/15265161.2

  RESULT

• 38. Bewick T, Simmonds M, Chikhani M, Meyer J, Lim WS. Pneumonia in the context of severe sepsis: A significant diagnostic problem. The European respiratory journal. 2008;32(5):1417- 1418. https://www.ncbi.nlm.nih.gov/pubmed/18978148. doi: 10.1183/09031936.00104808. 39. New chronic pain findings reported from national institute on aging (the silent epidemic of chronic pain in older adults)Mental Health Weekly Digest. Jul 15 2019:381. Version 5/21/25 Page 42 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 40. Rikard SM, Strahan AE, Schmit KM, Guy J, Gery P. Chronic pain among adults - united states, 2019-2021. MMWR. Morbidity and mortality weekly report. 2023;72(15):379-385. https://www.ncbi.nlm.nih.gov/pubmed/37053114. doi: 10.15585/mmwr.mm7215a1. 41. Flentje KM, Knight CL, Stromfeldt I, Chakrabarti A, Friedman ND. Recording patient bodyweight in hospitals: Are we doing well enough? Internal medicine journal. 2018;48(2):124- 128. https://onlinelibrary.wiley.com/doi/abs/10.1111/imj.13519. doi: 10.1111/imj.13519. 42. Yasinski E. For many disabled patients, the doctor is often not in. undark Web site. https://undark.org/2022/11/07/for-many-disabled-patients-the-doctor-is-often-not-in/. Updated 2022. Accessed November 21, 2023. 43. Landes SD, Stevens JD, Turk MA. Postmortem diagnostic overshadowing: Reporting cerebral palsy on death certificates. Journal of health and social behavior. 2022;63(4):525-542. https://journals.sagepub.com/doi/full/10.1177/00221465221078313. doi: 10.1177/00221465221078313. 44. Landes SD, Turk MA, Finan JM. Factors associated with the reporting of down syndrome as the underlying cause of death on US death certificates. Journal of intellectual disability research. 2022;66(5):454-470. https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12926. doi: 10.1111/jir.12926.

  RESULT

• 31. Epner, Pauk. Diagnostic error: Common, catastrophic, and costly . 2021. https://thepathologist.com/outside-the-lab/diagnostic-error-common-catastrophic-and-costly. 32. Kim Y, Shin DW, Kim HW, et al. Disparities in gastric cancer screening among people with disabilities: A national registry-linkage study in south korea. Gastric Cancer. 2020;23(3):497- 509. https://link.springer.com/article/10.1007/s10120-019-01017-8. doi: 10.1007/s10120-019- 01017-8. 33. McMahon M, McCallion P, McCarron M. An invisible population: Late-stage cancer diagnosis for people with intellectual or developmental disability. Cancer. 2024;130(5):668-670. Version 5/21/25 Page 41 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=175446967&authtype=sso& custid=cls59&site=ehost-live. doi: 10.1002/cncr.35132. 34. The joint commission issues sentinel event alert on diagnostic overshadowingTargeted News Service. Jun 24 2022. Available from: https://search.proquest.com/docview/2680211091.. 35. Boonman AJ, Cuypers M, Leusink GL, Naaldenberg J, Bloemendal HJ. Cancer treatment and decision making in individuals with intellectual disabilities: A scoping literature review. The lancet oncology. 2022;23(4):e174-e183. https://www.ncbi.nlm.nih.gov/pubmed/35358466. doi: 10.1016/S1470-2045(21)00694-X. 36. Newman-Toker DE, Wang Z, Zhu Y, et al. Rate of diagnostic errors and serious misdiagnosis-related harms for major vascular events, infections, and cancers: Toward a national incidence estimate using the "big three". Diagnosis (Berlin, Germany). 2021;8(1):67-84. http://www.degruyter.com/doi/10.1515/dx-2019-0104. doi: 10.1515/dx-2019-0104. 37. Hanna TP, King WD, Thibodeau S, et al. Mortality due to cancer treatment delay: Systematic review and meta-analysis. BMJ (Online). 2020;371:m4087. http://dx.doi.org/10.1136/bmj.m4087. doi: 10.1136/bmj.m4087

  RESULT

• 22. Bogart KR, Dunn DS. Ableism special issue introduction. Journal of social issues. 2019;75(3):650-664. https://onlinelibrary.wiley.com/doi/abs/10.1111/josi.12354. doi: 10.1111/josi.12354. 23. Friedman C. Mapping ableism: A two-dimensional model of explicit and implicit disability attitudes. Canadian journal of disability studies. 2019;8(3):95-120. doi: 10.15353/cjds.v8i3.509. 24. VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabilitation psychology. 2020;65(2):101-112. http://psycnet.apa.org/journals/rep/65/2/101. doi: 10.1037/rep0000317. 25. Valdez RS, Swenor BK. Structural ableism - essential steps for abolishing disability injustice. The New England journal of medicine. 2023;388(20):1827-1829. https://nejm.org/doi/full/10.1056/NEJMp2302561. doi: 10.1056/NEJMp2302561. 26. Iezzoni LI, Rao SR, Ressalam J, et al. Physicians' perceptions of people with disability and their health care . Health affairs (Millwood, Va.). 2021;40(2):297-12. https://www.ncbi.nlm.nih.gov/pubmed/33523739. doi: 10.1377/hlthaff.2020.01452. Version 5/21/25 Page 40 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 27. McMahon MA, Dluhy NM. Ambiguity within nursing practice: An evolutionary concept analysis. Research and theory for nursing practice. 2017;31(1):56-74. https://dx.doi.org/10.1891/1541-6577.31.1.56. doi: 10.1891/1541-6577.31.1.56. 28. Codish S, Shiffman RN. A model of ambiguity and vagueness in clinical practice guideline recommendations. AMIA ... Annual Symposium proceedings. 2005;2005:146-150. https://www.ncbi.nlm.nih.gov/pubmed/16779019. 29. Balogh EP, Miller BT, Ball JR. Improving diagnosis in healthcare. Committee on Diagnostic Error in Health Care; Board on Health Care Services; Institute of Medicine; National Academies of Sciences, Engineering, and Medicine. 2015. 30. Singh H, Graber ML. Improving diagnosis in health care. The New England journal of medicine. 2015;373(26):2493-2495

  RESULT

• 15. National Institutes of Health. NIH designates people with disabilities as a population with health disparities. https://www.nih.gov/news-events/news-releases/nih-designates-people- disabilities-population-health-disparities. 16. Seervai S, Shah A, Shah T. The challenges of living with a disability in america, and how serious illness can add to them. 2019. 17. McBride-Henry K, Nazari Orakani S, Good G, Roguski M, Officer TN. Disabled people's experiences accessing healthcare services during the COVID-19 pandemic: A scoping review. BMC health services research. 2023;23(1):346. https://www.ncbi.nlm.nih.gov/pubmed/37024832. doi: https://doi.org/10.1186/s12913-023- 09336-4. 18. Courtney-Long EA, Romano SD, Carroll DD, Fox MH. Socioeconomic factors at the intersection of race and ethnicity influencing health risks for people with disabilities. J Racial and Ethnic Health Disparities. 2017;4(2):213-222. https://www.jstor.org/stable/48707792. doi: 10.1007/s40615-016-0220-5. 19. Magana S, Parish S, Morales MA, Li H, Fujiura G. Racial and ethnic health disparities among people with intellectual and developmental disabilities. Intellect Dev Disabil. 2016;54(3):161-172. doi: 10.1352/1934-9556-54.3.161 [doi]. 20. Havercamp SM, Scott HM. National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disabil Health J. 2015;8(2):165-172. Version 5/21/25 Page 39 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 http://ezproxy.rush.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=psyh &AN=2015-12464-006&site=ehost-live. doi: 10.1016/j.dhjo.2014.11.002. 21. Van Dyke ME, Mendoza MCB, Li W, et al. Racial and ethnic disparities in COVID-19 incidence by age, sex, and period among persons aged MMWR. Morbidity and mortality weekly report. 2021;70(11):382-388. https://www.ncbi.nlm.nih.gov/pubmed/33735165. doi: 10.15585/mmwr.mm7011e1.

  RESULT

• 8. Sun M, Oliwa T, Peek ME, Tung EL. Negative patient descriptors: Documenting racial bias in the electronic health record. Health Aff. 2022;41(2):203-211. https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=155210482&authtype=sso& custid=cls59&site=ehost-live. doi: 10.1377/hlthaff.2021.01423. 9. Siems A, Banks R, Holubkov R, et al. Structured chart review: Assessment of a structured chart review methodology. Hospital pediatrics. 2020;10(1):61-69. https://www.ncbi.nlm.nih.gov/pubmed/31879317. doi: 10.1542/hpeds.2019-0225. Version 5/21/25 Page 37 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 10. Sarkar S, Seshadri D. Conducting record review studies in clinical practice. Journal of clinical and diagnostic research. 2014;8(9):JG01-JG04. https://www.ncbi.nlm.nih.gov/pubmed/25386466. doi: 10.7860/JCDR/2014/8301.4806. 11. Steenbruggen RA, Maas MJM, Hoogeboom TJ, Brand PLP, van der Wees PJ. The application of the tracer method with peer observation and formative feedback for professional development in clinical practice: A scoping review. Perspect Med Educ. 2022;11(1):15-21. https://link.springer.com/article/10.1007/s40037-021-00693-6. doi: 10.1007/s40037-021-00693- 6. 12. Murphy DR, Meyer AND, Bhise V, et al. Computerized triggers of big data to detect delays in follow-up of chest imaging results. Chest. 2016;150(3):613-620. https://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=117707565&authtype=sso& custid=cls59&site=ehost-live. doi: 10.1016/j.chest.2016.05.001. 13. Cogswell ME, Coil E, Tian LH, et al. Health needs and use of services among children with developmental disabilities - united states, 2014-2018. MMWR. Morbidity and mortality weekly report. 2022;71(12):453-458. https://www.ncbi.nlm.nih.gov/pubmed/35324879. doi: 10.15585/mmwr.mm7112a3. 14. Centers for Disease Control and Prevention. Disability impacts all of us. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.

  RESULT

• 1. Agaronnik ND, El-Jawahri A, Iezzoni LI. Perspectives of patients with pre-existing mobility disability on the process of diagnosing their cancer. J GEN INTERN MED. 2021;36(5):1250- 1257. https://link.springer.com/article/10.1007/s11606-020-06327-7. doi: 10.1007/s11606-020- 06327-7. 2. Hallyburton A. Diagnostic overshadowing: An evolutionary concept analysis on the misattribution of physical symptoms to pre-existing psychological illnesses. International journal of mental health nursing. 2022;31(6):1360-1372. https://onlinelibrary.wiley.com/doi/abs/10.1111/inm.13034. doi: 10.1111/inm.13034. 3. Schildkrout B. 5 mental health diagnostic challenges: Update on "to err is human". Psychiatric Times. ;33(Feb 18, 2016). https://www.psychiatrictimes.com/view/5-mental-health-diagnostic- challenges-update--err-human. 4. Demmin DL, Silverstein SM. Visual impairment and mental health: Unmet needs and treatment options. Clinical ophthalmology (Auckland, N.Z.). 2020;14:4229-4251. https://www.ncbi.nlm.nih.gov/pubmed/33299297. doi: 10.2147/OPTH.S258783. Version 5/21/25 Page 36 of 64ORA: 23111505-IRB01 Date IRB Approved: 3/15/2026 Amendment Date: 5/20/2026 5. Druel V, Hayet H, Esman L, Clavel M, Rougé Bugat M. Assessment of cancers' diagnostic stage in a deaf community - survey about 4363 deaf patients recorded in french units. BMC Cancer. 2018;18(1):93. https://www.ncbi.nlm.nih.gov/pubmed/29361910. doi: 10.1186/s12885- 017-3972-3. 6. Escude C. Advancing health equity for people with intellectual and developmental disabilities. Health Affiair Forefront. 2022. https://healthaffairs.org/content/forefront/advancing-health- equity-people-intellectual-and-developmental-disabilities. 7. Hendriksen JGM, Peijnenborgh JCAW, Aldenkamp AP, Vles JSH. Diagnostic overshadowing in a population of children with neurological disabilities: A cross sectional descriptive study on acquired ADHD. European journal of paediatric neurology. 2015;19(5):521-524. doi:10.1016/j.ejpn.2015.04.004.

  RESULT

MeSH Terms

Interventions

Educational Status; Standard of Care

Intervention Hierarchy (Ancestors)

Socioeconomic Factors; Population Characteristics; Quality Indicators, Health Care; Quality of Health Care; Health Services Administration; Health Care Quality, Access, and Evaluation

Study Officials

• Sarah H Ailey, PhD RN

  Rush University College of Nursing

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Director Research Affairs

CONTACT

312-942-3554; Jennifer_Garcia@rush.edu

Tricia J Johnson, PhD

CONTACT

312-942-7107; Tricia_J_Johnson@rush.edu

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: PROSPECTIVE
• Target Duration: 4 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Study Record Dates

• First Submitted: September 18, 2024
• First Posted: September 23, 2024
• Study Start: November 22, 2024
• Primary Completion (Estimated): March 31, 2029
• Study Completion (Estimated): July 31, 2029
• Last Updated: August 5, 2026

Record last verified: 2026-07

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL, SAP, CSR
• Time Frame: End Diagnostic Overshadowing program information will be shared on clinicaltrials.gov upon funding. Information will be updated at least yearly. The information will be submitted according to policy in the NIH "Policy on the Dissemination of NIH-Funded Clinical Trial Information." RUSH University Medical Center has policies in place to ensure that research registration and results reporting occur in compliance the NIH policy. Data will be findable and identifiable via standard indexing tools available through clinicaltrials.gov. Data will be made available to other users at least by the time of associated publications or end of the performance period. performance period. Data will be available for a minimum of five years after the last publication. If there is a funded competitive application, data preservation and sharing will continue into the time of the new application and for at least five years after the last associated publication.
• Access Criteria: Completed baseline data are available in a repository at Rush Universoity. All data deposited were stripped of identifying information. Efforts will be made to maximize sharing of data stripped of identifiers. Will need a request for data with justification to PI at Rush University. This research is approved as exempt by the Rush University IRB. Consent will thus not be a consideration in data sharing. If consent is needed for any portion of this research, data sharing will be made clear in the consent.

Locations

US (1)