The purpose of this research study is to compare the Always Uniquely Me (AUM) mobile application to regular medical care. The investigators want to know if AUM is helpful at decreasing use of restraints and improving experience in the emergency department (ED) for people with intellectual and developmental disabilities (PWIDD). The investigators will also be looking at how certain characteristics of the PWIDD participants may affect those outcomes.
have visited a Northwell Health Emergency Department in the last 12 months
have a confirmed intellectual and/or developmental disability
must be 18 years of age or older at enrollment
have a smart phone or tablet that connects to the internet
None
Parallel
Always Uniquely Me mobile phone application
Other interventionThe app will allow the user to organize their healthcare information and personal needs which can help improve communication with doctors, clinicians and first responders.
Use of physical and/or chemical restraints during ED visits
Measured using electronic medical record data.
Length of stay in the ED
Captured using electronic medical record data.
Experience of care in hospital-based EDs
Measured through the Emergency Department Consumer Assessment of Healthcare Providers and Systems (ED CAHPS). The questions were modified for reading level of the respondent and appropriateness for the study. This includes 17-19 questions that require yes/no, Likert Scale, and select-all-that-apply answers.
Perceptions of self and publicly enacted negativity, prejudice, and discrimination
Measured through the Quality of Life In Neurological Disorders Measurement System - stigma short form (Neuro-QoL stigma SF), a validated survey that includes 8 questions with Likert scale answer choices.
Perceived functional communication abilities
Measured through Quality of Life In Neurological Disorders Measurement System - communication short form (Neuro-QoL communication SF), a validated survey that includes 5 questions with Likert scale answer choices.
Overall health status, including physical, mental, and social health
Measured through the Patient-Reported Outcomes Measurement Information Systems Global Health (PROMIS global health), a validated survey that includes 10 questions with Likert scale answer choices.
Psychological distress and positive well-being
Measured through the Outcomes for Wellbeing and Distress Scale (OWLS-ID) for people with intellectual disability. This includes 27 that ask about positive well-being, emotional and behavioral discomfort, and anxiety on a Likert scale.
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Northwell Health
Lead sponsor
Institute for Exceptional Care
Collaborator
