For Persons with IDD, Higher Risk for Prolonged Hospital Stays: Solutions Needed

Why is it important to look at psychiatric inpatients who have lengthy hospitalizations? Are there any particular challenges for long-stay patients who have intellectual and developmental disabilities? 

Lengthy hospital stays can lead to serious harms for patients, families and the healthcare system. Though there are some patients who may require longer hospital stays, lengthy stays can also occur because hospitals lack the resources to provide the necessary care or because the community resources necessary to allow the person to transition out of hospital are not available. Prolonged hospital stays can lead to the deterioration of patients’ physical health, mental health and social connections, as well as create treatment delays and increased pressure across the healthcare system. Prolonged hospital stays can be particularly challenging for patients with IDD who communicate differently, have unique sensory needs, or rely on others for their day-to-day support. Although remaining in hospital for longer than needed is a problem for any patient, there are unique planning considerations for those with IDD, including the need for intersectoral collaboration between the health and disability sectors.  

 What motivated this research? 

We know from prior work that adults with IDD have a higher risk of becoming hospitalized and having long hospital stays but we wanted to understand the extent to which this group is occupying psychiatric hospital beds in Ontario, to inform system planning and efforts to transition these patients out of hospital.  We were concerned the number of long stay patients with IDD was being underestimated, leading to insufficient resources to support this population while in hospital and to support their transition back to the community.  

 What was the most important finding of this study, in your opinion? 

We found that more than 1 in 5 patients (22%) who had been in a psychiatric hospital bed in Ontario for over one year had an IDD. We also compared long-stay patients with IDD to long-stay patients without IDD and found that they are different in several ways. Long-stay patients with IDD were more likely to have difficulty taking care of themselves, have moderate/severe cognitive impairment and have fewer social supports in the community. These are characteristics that may make it more difficult for patients with IDD to transition out of hospital and they most likely require supports from both the community health and developmental services sectors to allow them to live successfully in the community. Finally, it is important to note that most long-stay patients with IDD in our study were not staying in specialized units for people with IDD. This is because we don’t have very many specialized units in Ontario and it may mean that the health care providers caring for them in the hospital lack the specialized training, resources or physical environments necessary to provide the highest quality care.  This is very relevant to how we train inpatient psychiatrists and other members of inpatient mental health teams, as well as how inpatient spaces are designed. 

How does this change service delivery in the future? 

Given the high prevalence of long-stay patients with IDD, increased capacity is needed within hospital inpatient settings to provide appropriate care for patients with IDD. This includes trained multi-disciplinary providers as well as the built environment necessary to provide appropriate care. Additionally, greater investment is needed in building the community resources necessary for these individuals to leave hospitals, including individualized housing solutions and community mental health care. We already have Ontario Practice Guidance which outlines how to successfully transition long-stay patients with IDD out of hospital and there are great examples of very successful partnerships between hospitals, community health and developmental services to support transitions that could be spread and replicated.  

Any next steps? 

 We are continuing to use health administrative data at the Institute for Clinical Evaluative Sciences (ICES) to better understand this patient group, including how they end up in hospital and their trajectory post discharge. The Ontario Ombudsman has just completed an investigation on patients with IDD who are inappropriately housed in hospitals and is calling for joint efforts by the Ministry of Children, Community and Social Services and the Ministry of Health to address these system gaps. We hope that continued research can help to improve care for patients with IDD. 

What is the major take home message for the public? 

While most of the conversation on prolonged or alternate level of care hospitalizations has focused on older adults, little attention has been given to the personal and systemic challenges faced by patients with IDD who spend years or even decades occupying psychiatric hospital beds. In this study, patients in both groups (with and without an IDD) had been hospitalized for an average of 5 years, some of them for over 20 years. A hospital is not a home. No one should be living in a hospital for decades. We have the solutions to this problem, we just need to implement them. 

We’d like to thank our co-athors Michael Campitelli, Anjie Huang, Dr. Robert Balogh and Dr. Paul Kurdyak.