Keeping patients home for the holidays: Innovative virtual care program brings complex ventilator support into the home

When Cristiano, now 7, was born, his parents didn’t think he would be spending the first 18 months of his life in hospital, marking many major milestones, including his first birthday and Christmas, at The Hospital for Sick Children (SickKids). Since he was six months old, Cristiano has needed a ventilator, and when the day finally came to take him home from the hospital, his parents were excited but afraid. They would become his frontline health-care team, monitoring his needs and troubleshooting any issues with his medical equipment. This technology finally gave Cristiano the freedom to live at home, but also posed many challenges for him and his family.

The COVID-19 pandemic has heightened the challenges faced by people like Cristiano, who rely on a ventilator and are at increased risk of complications, as many worry about travelling to hospitals for routine follow-up visits or have had reduced access to in-home care supports available in the community.

A team of clinicians from across Ontario, led by SickKids and the Ventilator Equipment Pool (VEP) operated by Kingston Health Sciences Centre (KHSC), has implemented the Long-Term In-Home Ventilation Engagement (LIVE) program. LIVE is an intensive virtual care management program meant to reduce the need for in-person hospital visits while enhancing access to care from home. The program had been in development prior to the pandemic but as the landscape shifted, the program leads quickly adapted their plans to support this patient population through this difficult time – and beyond.

COVID-19 compounds challenges faced by HMV users

Cristiano is one of 5,000 people in Ontario who require a type of home mechanical ventilation (HMV), which is an advanced, highly specialized, and complex long-term therapy offered to patients of any age who are unable to breathe without assistance.

These patients face increased health challenges compared to the general population, including a higher risk of complications from common respiratory illness and increased hospitalization. Clinicians stress that this year, it will be more important than ever to ensure patients can stay home and remain with family members in their households for the holidays.

HMV users require frequent visits with their specialized health-care providers to monitor their health status and ensure their ventilators are functioning properly. Between these visits, home-care providers, patients’ family members, and sometimes the patients themselves must become the experts on using ventilators at home. While patients and families receive training on how to operate this equipment, they usually don’t have any prior experience.

"The LIVE program provides a virtual safety net for patients using HMV and their families. We accelerated the program’s development to address the significant health and safety risks the HMV population can face during waves of the pandemic,” says Dr. Reshma Amin, Staff Respirologist and Associate Scientist in the Child Health Evaluative Sciences program at SickKids, who co-led the development of the LIVE program. “However, the LIVE program will continue to help HMV users – from babies to seniors and their caregivers – long after the pandemic.”

Partnering with patients and families gives program its strength

Over the past six years, Cristiano’s parents, Francine and Jared Buchanan, have become experts in home ventilation. In 2018, when Francine saw virtual care technology at a conference, she thought about the potential it could have on Cristiano’s care and their family’s confidence managing his medical equipment.

She brought the idea to Amin, who is also Cristiano’s respirologist, and together they worked to develop and customize a virtual care program for research evaluation for individuals using HMV in Ontario. When the COVID-19 pandemic started, Amin partnered with Regina Pizzuti, Manager of VEP operated by KHSC, to roll out a robust virtual clinical program that can meet the specific needs of the HMV community.

“As a leading centre for research and education, KHSC is pleased to partner with families and providers in this excellent example of care, discovery and learning to improve the health of our communities through partnership and innovation,” says Pizzuti.

The LIVE program enables individuals who use HMV to attend routine clinic visits from home, keep their care team updated on their health status, have two-way communication with their health-care providers and have information about ventilator at their fingertips for troubleshooting when technical issues arise. Clinicians can also remotely monitor their patients’ ventilators and have patients and their families fill out digital questionnaires about their ventilator use and symptoms.

“I think the strength of this program stems from it being co-designed by patients and families; it puts their needs first. When there’s an urgent issue with Cristiano’s health, we’re able to manage it ourselves with the help of a team that already knows him. We’re able to do routine appointments from home whereas before we had to travel with all his equipment to the hospital regularly. The program  was designed to build our confidence in our abilities and alleviate the fear that is often associated with using such complex medical equipment, ” adds Buchanan, who was a parent partner throughout the development of the LIVE program and is also a Patient and Family Engagement Coordinator in the Clinical Research Services department at SickKids.

There are currently more than 180 patients from seven Ontario hospitals – including SickKids, CHEO, McMaster Children's Hospital, Children’s Hospital at London Health Sciences Centre, Sunnybrook Health Sciences Centre, West Park Healthcare Centre and The Ottawa Hospital – participating in the LIVE program.

The app used in the LIVE program was developed by Aetonix and customized for the HMV population. The research team hopes to validate their initial success with the LIVE program through a clinical trial, which will launch in early 2021 for individuals in Ontario newly starting on HMV.

The LIVE program has been supported by VEP operated by KHSC and funded by the Ontario Ministry of Health Assistive Devices Program. The clinical trial is supported by the Canadian Institutes of Health Research (CIHR), Muscular Dystrophy Canada, Boehringer Ingelheim, Medigas Praxair Canada, ProResp and VHA Home Healthcare.