IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
VOLUME 35, NUMBER 3
JUNE 2021
On June 14, 2021, Philips initiated a voluntary recall notification for specific Philips Respironics models of BiPAP, CPAP and mechanical ventilator devices. The recall is to address potential health risks related to the polyester-based polyurethane (PE-PUR) sound abatement foam used in certain devices.
Philips determined based on testing that there are possible risks to users related to this type of foam. The risks include that the PE-PUR foam may degrade into particles which may enter the device’s air pathway and be ingested or inhaled by the user, and the foam may off-gas certain chemicals. The foam degradation may be exacerbated by use of unapproved cleaning methods, such as ozone, and high heat and high humidity environments may also contribute to foam degradation...........................................................................................MORE
ADDITIONAL SECTIONS
Advocacy
Educate, discuss, take action
Networking
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Educational Opportunities
Conferences and webinars for health professionals and ventilator users
Ventilator-Assisted Living
Vol. 35, No. 3, June 2021
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2021 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at info@post-polio.org.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to info@ventusers.org.
On June 14, 2021, Philips initiated a voluntary recall notification for specific Philips Respironics models of BiPAP, CPAP and mechanical ventilator devices. The recall is to address potential health risks related to the polyester-based polyurethane (PE-PUR) sound abatement foam used in certain devices.
Philips determined based on testing that there are possible risks to users related to this type of foam. The risks include that the PE-PUR foam may degrade into particles which may enter the device’s air pathway and be ingested or inhaled by the user, and the foam may off-gas certain chemicals. The foam degradation may be exacerbated by use of unapproved cleaning methods, such as ozone, and high heat and high humidity environments may also contribute to foam degradation.
The recall affects the following devices:
Philips is notifying users of the affected devices. Currently, they plan to replace devices with a new or refurbished unit that incorporates new, safe material, or repair them by replacing the sound abatement foam in the units.
What should you do if you have a device on the recall list?
Philips has established a registration process for users in the US and Canada that allows patients, users, or caregivers to look up their device serial number and begin a claim if their unit is affected. You may begin the process online here or call 877-907-7508.
Patients are advised to consult with their doctors about next steps. In some cases, patients may be able to switch to an alternate device. If an appropriate device is unavailable, you may be able to use a bacterial filter to trap loose particles from the foam, though this wouldn’t solve the issue of chemical exposure due to off-gassing. For some though, the benefits of continuing to use the devices "may outweigh the risks," Philips said.
Philips has more information online, including answers to some commonly asked questions, as well as links to begin the registration process.
ADVOCACY
Rural Personal Assistant Services Project Wants to Hear from You
The Rural Personal Assistant Services project is expanding its interviews nationwide to collect more information about PAS service delivery and experiences across the country. The project, which studies how personal assistant services are associated with community participation in urban and rural places, is now conducting interviews with rural people who use personal assistance services anywhere in the United States.
Approximately 10 million people with disabilities receive paid personal assistance services (PAS). For many, these services are critical for social and community participation. In many regions, there are not enough PCA workers to meet the needs of people with self-care disabilities.
Are you a rural person with a disability who receives personal assistance services in your home?
Rural PAS is looking for people to be interviewed over the phone or via video chat.
They are interested in:
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the types of personal assistance services you receive
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what your workers are like
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how you train them
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about your general community and health experiences
The interview will last for approximately one hour, and you will be compensated $30 for your time.
For more information, contact Rayna Sage: ruralPAS@mso.umt.edu or 406-243-5233.
Bipartisan Telehealth Modernization Act Aims to Increase Access to Telehealth Services
The Biden Administration's recent proposal to spend $400 billion over eight years on home and community-based services (HCBS) as part of its infrastructure plan has stalled. A bipartisan infrastructure deal that Biden endorsed last week did not include the proposed increase in funding for HCBS.
While increasing funding for home and community based services enjoys broad support, some senators objected to its inclusion an an infrastructure bill. Despite the setback, some advocates speculate that the extra funds for HCBS may be included in a budget reconciliation bill that could be passed later in the year.
NETWORKING
PPMD Webinar: Navigating the College Campus with Duchenne
Parent Project Muscular Dystrophy (PPMD) recently hosted a webinar featuring recent graduates with Duchenne to talk about the college experience and how to plan for success. The participants discussed navigating campus disability services, finding funds for housing, hiring personal care assistants, and post-college life, among other topics.
The recording is available to view on their website, which also features some frequently asked questions and a checklist for hiring a personal care assistant (PCA).
CHEST Foundation Launches New Initiative to Address Health Disparities
The CHEST Foundation has embarked on a new initiative to "build trust, identify barriers, and promote health care access for all". The centerpiece of this effort, the CHEST Foundation Listening Tour, will attempt to give a voice to patients who live in historically undeserved communities, building trust and understanding between patients, their families, their caregivers, and their clinicians. At the conclusion of the listening tour, the foundations hopes to create a designated fund that will help transform some of their ideas into action. Learn more about the effort here.
Global Tracheostomy Collaborative
The Global Tracheostomy Collaborative has a collection of webinars it has held in the past available for viewing on its website. Titles include "The Voice of Patients and Families in Tracheostomy," "Thriving with a Tracheostomy in the Community," and others.
RECENT RELEVANT
PUBLICATIONS
Tracheostomy Decision-making Communication among Patients Receiving Prolonged Mechanical Ventilation
Xu L, El-Jawahri AR, Rubin EB.
“Of the 241 patients included, 191 (79.2%) had at least one documented conversation regarding tracheostomy decision-making, and 148 (61.4%) required further discussions before reaching a decision. We identified the following four themes related to tracheostomy decision-making: patient’s previously expressed preferences, patient’s baseline condition and functional status, long-term complications, and long-term prognosis. Of the documented conversations, 45.3% addressed none of the identified themes. Patients who did not undergo tracheostomy placement were more likely to have documented discussion of one or more themes compared with those who did (74.6% vs. 41.6%). In multivariate analysis, age ≥75, female sex, significant preadmission functional dependence, home oxygen requirement, and involvement of palliative care were associated with more documented discussion of one or more themes.”
Annals of the American Thoracic Society. 2021 May;18(5):848-856. doi: 10.1513/AnnalsATS.202009-1217OC.
Kaminska M, et al.
Long-term non-invasive ventilation in patients with chronic obstructive pulmonary disease (COPD): 2021 Canadian Thoracic Society Clinical Practice Guideline update
“This 2021 guideline update represents an important shift from the previous recommendation against the use of long-term NIV in most patients with COPD and chronic hypercapnia, toward its suggested use. Based on the reported survival and hospital readmission rate benefits, we suggest long-term NIV in highly selected patients with COPD and chronic hypercapnic respiratory failure along with the use of specific and closely monitored ventilatory strategies.”
Canadian Journal of Respiratory, Critical Care, and Sleep Medicine. Published online: 07 May 2021. doi:10.1080/24745332.2021.1911218
Amin R, Pizzuti R, Buchanan F, Rose L.
A virtual care innovation for home mechanical ventilation
“In other settings, virtual care for HMV users has been found to promote the efficiency of scarce health care resources by reducing emergent health care use and the cost of care to patients, family members, and the health system.10–13 To date, patients and family caregivers enrolled in LIVE report that the program engenders feelings of being “connected, empowered and safe.” Qualitative feedback from HMV teams show the ease of connection with families, as well as the time-saving and clinical benefits of ventilator telemonitoring.”
Canadian Medical Association Journal. 2021;193(17):E607-E611. doi:10.1503/cmaj.202584
EDUCATIONAL
OPPORTUNITIES
European Respiratory Congress 2021
The European Respiratory Society will hold their 2021 International Congress from September 5-8, 2021. This year's congress will fully virtual. Additional details are available online. Registration opens May 10.
CHEST 2021
CHEST 2021 will be both an in-person and a livestreamed event. It will take place October 17-20, 2021, online and in Orlando, Florida. For more information, go to https://chestmeeting.chestnet.org/.
JIVD/ERCA Conference in 2022
The 4th International Joint Meeting of the JIVD (Journes Internationales de Ventilation Domicile) and ERCA (European Respiratory Care Association) will be held March 3-5, 2022, at Cité Centre de Congrès, Lyon, France. For more information, go to www.jivd-erca2022.com.
CCHS Network Family Conference 2022
Next year's CCHS Network Family Conference will take place July 19-22, 2022, in Newport Beach, California. Family conferences foster a supportive and collaborative CCHS union between professionals and families, all with the intent of improving outcomes for CCHS patients. Registration for the conference and hotel reservations with our discounted group rate should be set up by the end of April 2021.