Description

PWIDD have high rates of ED use and poor quality of experience in EDs compared to the general population. Among a multistate cohort of adults with IDD, the risk of emergency department visits for adults with IDD was more than twice that for other adults, particularly for conditions that can be safely treated in the community (e.g., urinary tract and respiratory infections), and psychiatric conditions.1 PWIDD were more likely than those without IDD to visit the ED in a population based cohort in Ontario, Canada. For both groups, receiving greater continuity of primary care was associated with less ED use, but this relationship was more marked for adults with IDD. Another national study also found that compared to children with IDD with no emergency room visits, those with 3 or more emergency room visits were less likely to report access to a source of outpatient healthcare.

PWIDD have poor experiences in EDs. A large survey of PWIDD recently admitted to a hospital who were recruited from disability service organizations found that 12% did not always get the right medication; 22% didn't get their medication on time or only sometimes; 18% didn't get enough to drink; 13% didn't get enough to eat; 39% could not get to the toilet when they needed to, while 7% could do so only sometimes; and 11% reported not getting help in moving from their bed when needed. A systematic review of hospital experiences of people with intellectual disability found similar findings, citing failures of hospitals and staff to meet patient needs due to limited knowledge and skills of staff, negative attitudes, hospital systems failing to make required adjustments, and reliance on carers for both care and advocacy for appropriate treatment.

There is some evidence that tools like AUM improve PWIDD's experiences and outcomes.

Patient-held medication lists may improve experience by (a) creating the "glue" between disjointed healthcare systems, (b) enhancing situational awareness among clinical teams, (c) support clinical teams in checking for errors, (d) ease challenges in communication, (e) improve patient empowerment, (f) serve as a memory aide during appointments when patients are under stress, (g) serve as a reminder to take medications, and (h) serve as a reminder for clinicians to reorder medications.

Among people with diabetes undergoing surgery, those randomized to use of health passports similar to AUM received more information about their expected diabetes care prior to surgery (92% vs 35%), were more involved in planning their diabetes care, were less anxious while in the hospital, more prepared to manage their diabetes care on discharge, and had a shorter mean length of stay (4.4 vs 6.5 days) compared to controls. Among people with diabetes in New Zealand, use of a health passport was associated with a relative reduction in HbA1c of 0.4% (a measure of diabetes control) and a relative increase in weight of 1.0 kg/m2, but no changes in diabetes knowledge, attitudes to diabetes or risk factors for diabetic tissue damage. In another study of adults with diabetes followed in nine Dutch general hospitals, use of a healthcare passport let to small but significant changes in mean HbA1c levels.

There is no published evidence on the impact of health passports on use of restraints during ED visits in any population. Among individuals with congenital heart disease, a health passport showed initial improvements in disease knowledge or physical activity intensity, but those effects were not sustained at 6 months or 1 year. Among individuals with inflammatory bowel disease, health passports and Standardized routine email interactions between an IBD nurse and patients does not reliably improve most traditional disease outcomes. Among individuals with rheumatoid arthritis, there were no effects on self-efficacy expectations, knowledge, health status, or behavior among those with and without health passports.

Because previous studies have shown mixed results of using health passports and other tools similar to AUM, and no prior studies have examined their impact in particular on the use of restraints during ED visits, it is important to systematically collect new data for analysis to determine whether this tool will meaningfully reduce rates of use of restraints during ED visits, and improve the experience of PWIDD, their care partners.

Compelling data and rigorous evaluation findings will allow clinics, hospitals and health systems, insurers, disability service organizations, and public agencies like Medicaid or departments for developmental disabilities to make informed decisions about whether/how to expand use of the tool. Findings from this evaluation will also support stakeholders in developing business cases for covering use of the tool as a benefit, whether in an insurance product or as part of government or community programs.

The investigators will conduct a two-arm, pragmatic randomized controlled trial (RCT) of PWIDD, who will be randomized 1:1 to either to standard care plus AUM, or to the control group that will receive standard care and will not have access to the tool stratified by PWIDD or proxy respondent status and presence of maladaptive behaviors. This is a non-blinded study because the nature of the intervention prevents participants from being blinded to their study arm. The primary goal of this study is to compare the effectiveness of the AUM mobile app vs. standard care on the use of restraints and experience of PWIDD and their care partners in the ED and in other clinical settings.

The study team will recruit potential participants who have engaged with any Northwell Health emergency department in the previous 12 months. The team's goal is to enroll 1,500 eligible PWIDD. If participants are unable to answer questions on their own, legally authorized representative will be engaged to provide proxy responses. Primary research participants will be asked to identify an individual who assists with medical care (care partner). Care partners will be approached for participation as secondary research subjects and will answer survey questions about their own experience while caring for their PWIDD care recipient in ED and ambulatory settings.