VOLUME 36, NUMBER 1

FINDINGS

Part 1: We conducted 28 interviews, including 14 new and 14 established cough assist users and caregivers. Both new and established users were highly confident in use of cough assist, with average scores of 8.8 and 8.3 respectively. Overall, interview participants were satisfied with their initial education which generally comprised a 1–2-hour one-on-one session at home or in clinic with device demonstration and hands-on practice. They viewed hands-on practice and teaching of caregivers as more beneficial than written materials.

Participants reported ongoing support for cough assist use was variable. Most indicated a lack of specific follow-up resulting in uncertainty if they were using cough assist correctly, or if it was effective.

Things that made interview participants more likely to use cough assist were that it was easy use, the initial training, support from formal/informal caregivers, and that they experienced symptom relief. Barriers to use were inadequate education on why cough assist was needed, technique and benefit, lack of follow-up, and inadequate knowledge of cough assist by community/non-specialist providers.

Part 2: We recruited 106 adults and children using a cough assist device. We found no difference in emergency department visit or hospital admission rates in the 12 months before and 12 months after receiving a cough assist device. However fewer days were spent in hospital (P=0.03). We also found the number of physician specialist visits decreased from seven to four visits on average (P<0.0001). Conversely, the use of homecare nursing and homemaking/ personal support visits increased.

We found that the difference in healthcare costs before and after commencing cough assist differed.

For most (59%) participants these were lower, for 13% they were not different, and for 27% they were higher. The most important predictor of costs after cough assist approval was the healthcare costs in the 12 months before receiving a device. At 12 months, 23 (22%) participants had died, with the risk of death highest for those using more medical devices in the home.

Part 3: We recruited 108 cough assist users, with most common diagnoses being ALS (40%) and muscular, myopathic and myotonic dystrophies (25%). Daily cough assist device use was 51% of study days on average. We found no change in health-related quality of life overall over the nine-month study duration. The average self-reported breathlessness worsened from a score of 2.1 at baseline to 3.1 at nine months. The average monthly cost of publicly or privately funded healthcare was $1,195 CAD, although costs were substantially higher in some participants. Higher costs were associated with an ALS diagnosis, requiring mechanical ventilation, being non-ambulatory and using the cough assist device on more study days.

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OVERALL CONCLUSIONS

Part 1: The current Ontario model of education for the use of cough assist in the home on initiation meets cough assist user and family caregiver needs. Improvements to follow-up education are needed to sustain device benefit and maintain confidence in technique.

Part 2: Provision of publicly funded cough assist devices did not change the number of emergency department visits or hospital admissions but did reduce the number of days in hospital and specialist doctor visits. This resulted in a shift of healthcare utilization and costs from the acute care to community sector. The risk of death was highest in individuals requiring multiple medical technologies in the home that included cough assist.

Part 3: We found no change in health-related quality of life in the first nine months of using a cough assist device but a small worsening in self-perceived breathlessness. Similar to our previous work in home ventilated patients, costs were highest in participants with the greatest disease/symptom severity, including those with ALS, requiring ventilation, non-ambulatory, and also those using cough assist on more study days.

Publications to Date

Dale CM, McKim D, Amin R, Carbone S, Fisher T, Goldstein R, Katz S, Gershon A, Leasa D, Nonoyama M, Pizutti R, Tandon A, Rose L. Education Experiences of Adult Subjects and Caregivers for Mechanical Insufflation-Exsufflation at Home. Respir Care. 2020 Dec;65(12):1889-1896.

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Rose L, Fisher T, Pizzuti R, Amin R, Croxford R, Dale CM, Goldstein R, Katz S, Leasa D, McKim D, Nonoyama M, Tandon A, Gershon A. Health Care Use, Costs, and Survival Trajectory of Home Mechanical Insufflation-Exsufflation: Health Database Case Control Study. Respir Care. 2021 Oct 20:respcare.09263. doi: 10.4187/respcare.09263.
 

Feds Warn Health Providers About Denying Care To Those With Disabilities

Federal officials are reminding the nation’s health care professionals that withholding treatment because a person has a disability is often illegal — even if resources are scarce.

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In guidance issued earlier this year, the U.S. Department of Health and Human Services’ Office for Civil Rights is telling providers that civil rights protections for people with disabilities “remain in full force and effect” amid the COVID-19 pandemic.

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“Our civil rights laws stand no matter what, including during disasters or emergencies, and it is critical that we work together to ensure equity in all that we do for all patients,” said Secretary of Health and Human Services Xavier Becerra. “The pandemic has shone a light on the disparities in our health care system and provided us with a new opportunity to address them in a meaningful way. Protecting people with disabilities from being discriminated against in crisis situations is a critical part of this work, and we are continuing to evaluate our operations department-wide to ensure accessibility.” Full article here.