Does Experience Matter? Examining the Relationships between Disease Experience and Perceptions of Research in Emergency Settings Open Access

Abstract

Abstract

Does Experience Matter? Examining the Relationships between Disease Experience and Perceptions of Research in Emergency Settings
By Victoria A. Mah

Objective: To determine how attitudes towards emergency research, exception from informed consent (EFIC) and a specific proposed clinical trial using EFIC (ProTECT III) are shaped by an individual's experience with illness.
Methods: ProTECT III is a randomized trial of progesterone for the treatment of traumatic brain injury (TBI). Data was collected from over 2,000 participants attending ProTECT III community consultation events hosted by 12 academic and medical centers around the country. Participants answered a survey during community consultations that gathered demographic data as well as opinions on specific consent circumstances in emergency research. Analysis was performed using chi-square test for proportions, t-test for means, and stratification to determine the impact of personal experience with TBI on attitudes towards ProTECT III and whether additional participant characteristics modulated the effect of personal experience.
Results: Among those participants who have either experienced a TBI themselves or have had a family member or friend suffer a TBI, there was a slightly higher level of acceptance of ProTECT III and EFIC than among those who did not have personal TBI experience. Age, race, and knowledge of ProTECT III all influenced the way in which personal TBI experience affected attitudes toward ProTECT III and EFIC. Among those participants who were 35 years and older, identified with a race other than Black, and had an incomplete understanding of the risks and benefits of ProTECT III, personal TBI experience appeared to be associated particularly strongly with favorable attitudes toward EFIC and the ProTECT III study.
Conclusion: These findings of differences in attitudes between those with personal TBI experience and those without may guide institutional review boards and investigators in setting standards or guidelines for the community consultation component of emergency research. Further studies on this relationship between disease experience and views of EFIC are needed to deepen our understanding of how different types of experience with a disease influence participants' attitudes towards emergency research.

Table of Contents

Table of Contents

Chapter 1: Introduction .......................................................................................................... 1
Chapter 2: Comprehensive Review of the Literature ..................................................................... 8
Introduction ......................................................................................................................... 8
Perceptions of Medical Research...................................................................................,............ 8
Perceptions of Emergency Research ......................................................................................... 11
Illness Experience and Perceptions ........................................................................................... 13
Summary and Study Relevance ................................................................................................ 16
Chapter 3: Project Content ..................................................................................................... 18
Methods .............................................................................................................................. 18
Results ................................................................................................................................ 23
Study Population ................................................................................................................... 23
Attitudes towards ProTECTTM III and EFIC Research .................................................................... 25
Factors That Influence the TBI Experience and EFIC Attitudes Relationship ....................................... 28
Chapter 4: Discussion, Conclusion and Recommendations ............................................................... 32
Discussion ............................................................................................................................ 32
Conclusion ............................................................................................................................ 42
Recommendations .................................................................................................................. 42
References ........................................................................................................................... 45
Tables and Figures ................................................................................................................. 48
Figure 1: NETT Hubs and Centers10 ........................................................................................... 48
Table 1: Geographic Distribution of Participants (n= 2620) ............................................................. 48
Table 2: Study Population Characteristics ................................................................................... 49
Table 3: Personal Experience with TBI among Participants (n= 2578, 42 missing) ................................ 50
Table 4: Characteristics Analyzed for Differences between Those with Personal

TBI Experience and Those Without ............................................................................................. 51
Table 5: Attitudes toward ProTECTTM III .................................................................................... 53
Table 6: Attitudes toward ProTECTTM III by Personal TBI Experience ................................................ 54
Table 7: Types of Personal TBI Experience and Attitudes towards ProTECTTM III ................................ 55
Table 8: Types of Personal TBI Experience and Knowledge about ProTECTTM III .................................. 56
Table 9: Types of Personal TBI Experience and Knowledge about ProTECTTM III Using Means ................. 57
Table 10: Stratification on Age Groups of Under 35 and 35 and Up .................................................... 58
Table 11: Non-Stratified and Stratified Differences in Favorable Response to Inclusion of Patients in

General in ProTECTTM III without Consent between Those with and Those without Personal

TBI Experience ......................................................................................................................... 60
Table 12: Stratification on Race by Black and Non-Black .................................................................. 61
Table 13: Stratification on Levels of Understanding ......................................................................... 63
Appendices .............................................................................................................................. 65
IRB Approval ............................................................................................................................ 65
Finalized ProTECTTM III Community Consultation Survey .................................................................. 66

About this Master's Thesis

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School	Rollins School of Public Health
Department	Hubert Department of Global Health
Degree	MPH
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health Health Sciences, Medicine and Surgery
Keyword	Exception from informed consent Perceptions of research Research in emergency settings Emergency research Disease experience Illness experience Attitudes towards research EFIC
Committee Chair / Thesis Advisor	Pentz, Rebecca, Emory University
Committee Members	Ali, Mohammed, Emory University
Partnering Agencies	Emory University schools, faculty or affiliated programs University, college or educational institution (other than Emory) Hospital or other health care provider

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