Albert Einstein College of Medicine
The Bronx, New York, 10461, United States
NCT Number: NCT07220837
This study will measure the effects of a brief one-time eLearning intervention on researcher Knowledge, Attitudes, and Perceptions (KAP) of including people with disabilities (PWDs) in biomedical & behavioral research. Researchers will be recruited from across the Einstein/Montefiore network, and other medical centers with a focus on CTSAs.
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Notify Me18 year and older
All sexes
Interventional
Not applicable
The Bronx, New York, 10461, United States
According to the Centers for Disease Control and Prevention (CDC), 1 in 4 adults in the U.S. has a disability, approximately 29% of the overall population. Adults with (vs. without) disabilities have higher rates of obesity (41.6% v. 29.6%), smoking (21.9% v. 10.9%), heart disease (9.6% v. 3.4%), and diabetes (15.9% v. 7.6%), and lower rates of preventive care (e.g., mammograms, cervical cancer screening).
Disability may present as salient to others or be non-visible (e.g., autism, Long COVID). Non-visible disabilities comprise 70-80% of all disabilities; robust data finds stronger negative attitudes towards non-visible (vs. visible) disabilities.
People with Disabilities (PWDs) are under-represented in health research. Reasons include: a) structural elements of research: poorly justified exclusion criteria, PWDs not designated as a vulnerable group, b) access barriers: physical, sensory, literacy; and c) PWDs skepticism due to researcher bias, lack of perceived benefit, focus on cure vs. quality of life. Data on provider attitudes towards people with disabilities (PWDs) is scant.
KAP of barriers and benefits are modifiable roadblocks to including PWDs in research. The research team will develop and test tools to increase researcher motivation and capacity to mitigate perceived barriers. For Aims 1 and 2 of D2/R3, the research team engaged the 10 US sites (Einstein is one) that are Clinical and Translational Science Awards (CTSAs) and Intellectual and Developmental Disabilities Research Centers (IDDRCs) for basic/clinical research and University Centers of Excellence in Developmental Disabilities (UCEDDs).
Timeliness - This study is timely and novel as the perception of disability in research settings has shifted in recent years. Made apparent by the NIHs designation of PWDs as a health disparities population and changes to the Research, Condition, and Disease Categories (RCDCs) (i.e., disability research is now included on the list).
This registration is exclusive to Aim 3 of the D2/R3 study.
Healthy volunteers accepted: Yes
Only the study team can determine whether someone qualifies for participation.
Inclusion criteria
Exclusion criteria
Components of KAP survey:
Demographics-research experience/role, disability status, exposure to PWDs, etc. (baseline pre-survey only; e.g. not asked at post follow-up survey) Knowledge-short-answer, clinical scenarios, items focused on historical/legislative context, etc.
Attitudes-validated "Attitudes to Disability Scale" (ADS) developed by a World Health Organization (WHO) working group Perceptions-questions developed by Prosci's Awareness, Desire, Knowledge, Ability, Reinforcement (ADKAR) framework.
Disability Statistics Training (University of New Hampshire Link). Modules identify disability data sources via US surveys and measurement hurdles in disability research:
A) Module 2/Topic 1 (13m:44s):
Operationalization of Disability in Surveys- covers the two common operationalization methods, the 6 Question Sequence (6QS) and the Washington Group Short Set (WGSS), and the challenges of collecting disability data
B) Module 3/Topic 1 (13m:48s):
Disablement Models- conceptually defines models, such as Nagi's Disablement Model, Work Disability, Verbrugge and Jette, and WHO's Definition.
Other names: Disability Statistics Training
Time frame: Pre-intervention at baseline and 3-4 weeks post intervention
Change in Attitudes will be assessed using the 16 item Attitudes to Disability Scale (ADS). Scoring range on a 5-point Likert scale ranging from 1-5, yielding an overall possible scoring range of 16-80. Participants for whom a single item is inapplicable (i.e., N/A) will have data removed for that item. Lower scores indicate less favorable attitudes towards people with disabilities, while higher scores indicate more favorable attitudes.
*Note: Questions 1-6 & 11-16 are reverse coded.
Time frame: Pre-intervention at baseline and 3-4 weeks post intervention
Change in Knowledge scores from baseline will be assessed using a 10 item multiple choice scale which assesses how disability is conceptualized, historical and legislative context, etc. Scoring range: 0%-100%, whereby the percentage correct indicates comprehension towards factual items and best practices for engaging people with disabilities. Questions 4, 8, and 10 can be scored for partial credit. Percentage correct scores will be summarized by study arm.
Time frame: Pre-intervention at baseline, and 3-4 weeks post intervention
Change in Perception from baseline will be assessed using a 17 item Change in Perception scale. Scores are based on 5 domains (i.e. Awareness, Desire, Knowledge, Ability, Reinforcement). Scoring range for each domain includes: Awareness (1-5), Desire (2-10), Knowledge (4-20), Ability (4-20), Reinforcement (6-30). An overall composite score of 17-85 for all 5 of these domains. Participants for whom a single item is inapplicable (i.e., N/A) will have data removed for that item. Higher scores indicate greater awareness of, willingness and motivation to include, understanding about, ability to include, and reinforcement of inclusive behavior, respectively, regarding inclusion of people with disabilities in research.
Albert Einstein College of Medicine
Other
Randomized Control Trial (RCT) of Online Learning Module to Advance Research Related to People With Disabilities (D2/R3)
Acronym: D2/R3
OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.
View the official ClinicalTrials.gov record (opens in a new tab)This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.
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