The Research Fund's First Award

Reports and updates from the first grant recipient.
Final Report: Ventilator Users' Perspectives on the Important Elements of Health-Related Quality of Life

The final 115-page report, in pdf format, presents the perceptions of the health-related quality of life of 26 individuals living in the community (Toronto and Edmonton, Canada) with long-term use of home mechanical ventilation due to neuromuscular disability or traumatic injury.

The researchers presented a poster at the 2003 Chest annual meeting in June 2003. For more information, contact Dina Brooks at

PHI welcomes your comments ...

"While I agree with the researchers that sample bias may have influenced the findings of this study, the excerpts from the participant interviews adds an important dimension to our understanding of what life is like for persons who require this supportive technology. As with all research, the findings of this study will lead to new questions and opportunities for further investigation."
-Michele T. Lahey, Chief Operating Officer, University of Alberta Hospital's Stollery Children's Hospital

Research Grant to Examine Ventilator Users' Quality of Life

Post-Polio Health International (formerly Gazette International Networking Institute), awarded its first Research Grant to a multi-disciplinary research team in Toronto, Canada.

The recipients of the $20,000 award, funded by the Thomas Wallace Rogers Memorial Respiratory Research Grant, seek to expand knowledge about the factors that impact the health and well-being of people with neuromuscular diseases and conditions affecting breathing (polio, ALS, muscular dystrophy, etc.) who live at home with their ventilators.

The study will be conducted through the Clinical Evaluation and Research Unit and the Respiratory Rehabilitation Program at West Park Health Care Centre. Qualitative research methods will be utilized to document long-term ventilator user perspectives on what they consider to be important for the attainment and maintenance of health-related quality of life. In addition, the team will describe how consumers perceive their quality of life changing as personal living circumstances evolve over time and how this relates to independent living. This knowledge can be used to influence service delivery to reflect consumer priorities as well as enhance the system's ability to meet the expectations of long-term ventilator users.

"Even though mechanical ventilation has been available since the polio epidemics of the 1940s, new knowledge about the consequences of long-term ventilation on the quality of life of ventilator users will provide more insight into these individuals' care," stated Martin B. Wice, MD, Medical Director of St. John's Mercy Rehabilitation Center in Saint Louis and President of GINI's Board of Directors.

Members of the research team, led by Mark Tonack, MA, Senior Researcher, Toronto Rehabilitation Institute, and Research Associate, West Park Health Care Centre, are polio survivor and ventilator user Audrey King, MA, Vice Chair, The Center for Independent Living in Toronto; Dina Brooks, PhD, Assistant Professor, Department of Physical Therapy, University of Toronto, and Research Associate at West Park Health Care Centre; and Roger Goldstein, MD, Professor of Medicine and Physical Therapy, University of Toronto, and Director of Respiratory Medicine, West Park Health Care Centre.

"This study reflects GINI's mission of collaboration among ventilator users, health professionals, and researchers through every phase of the project," says Joan L. Headley, Executive Director, GINI (now PHI). "The outcome promises to provide a crucial link between the ventilator user's perspective and future clinical practice."

Launched in 1995 with a bequest from polio survivor and investment advisor Thomas Wallace Rogers, The Research Fund supports the work of researchers and clinicians investigating the late effects of poliomyelitis or neuromuscular respiratory disease through one of two grants:

The grant award is based on a competitive review of proposals by a panel of research experts, health care professionals, and persons with disabilities.

"Tom would be proud that the first grant recipients are exploring home mechanical ventilation," states Oscar A. Schwartz, MD, Tom's physician for many years. "He demonstrated to me that long-term ventilator users live active, involved lives, but there is more to learn."

Additional contributions are needed to increase the corpus of The Research Fund so larger grants can be awarded.

"Contributing to the Fund is an excellent way to honor loved ones," says Joan Headley, Executive Director of PHI & IVUN.

Tax-deductible donations can be sent to:

Post-Polio Health International (PHI)
4207 Lindell Boulevard, #110, Saint Louis, Missouri 63108-2915 USA

Checks should be made payable to "Post-Polio Health International" (US dollars only).
PHI also accepts VISA, MasterCard and Discover.

Connect here for ways to donate to The Research Fund

To offer "Gifts-in-Kind" sponsorships, or to ask about the needs of PHI, contact Joan L. Headley, Executive Director, at 314-534-0475 or

PHI's Federal I.D. No. 34-0961952

The Research Fund

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