Japanese and American ALS patient preferences regarding TIV (tracheostomy with invasive ventilation): A cross-national survey

Abstract

Substantial disparities in TIV utilization rates among ALS patients have been observed, with rates in Japan far exceeding rates in the United States. Our objective was to elicit national preferences and their determinants. We predicted more Japanese than American patients would desire TIV, as would sicker patients, those already using non-invasive interventions, and those with more positive mood and outlook. Patients were enrolled in five U.S. states and six Japanese regions. Eligible patients completed surveys during clinic visits (U.S.) or at home (Japan). Survey responses were in multiple-choice format and took about 15 min to complete. One hundred and fifty-six Americans and 66 Japanese patients participated. Contrary to expectations, Japanese patients were more likely to oppose TIV, as were those on 24-h NIV and patients who knew someone using TIV. Most Japanese and American patients with advanced respiratory impairment were undecided or opposed to TIV, while nearly 20% in both countries were in favor. Finally, patients who favored TIV or who were undecided had more energy, greater wish to live, and more sense of control over ALS management. In conclusion, factors other than patient preferences, such as neurologist preferences, caregiver attitudes and perhaps lack of advance planning, may influence probability of TIV utilization.

Key words::

• ALS
• TIV
• Japanese/American survey
• end-of-life preferences

Acknowledgements

We thank Wings Over Wall Street for a grant to support this project in the United States. M. Ogino received a Health and Labor Sciences Research Grant on Intractable Diseases from the Ministry of Health, Labor and Welfare of Japan to support the project in Japan. We thank Koko Muraoka, Toho University School of Nursing, for her assistance with translation, and most of all we thank the patients who so generously took the time to participate in this study.

Study sites and site coordinators:

United States: Columbia University (NY): Meredith Pasmantier Kim, Maria Albir

Drexel University (PA): Christine Barr, Mary Paolone

California Pacific Medical Center (CA): Dallas Forshew, Will Harris

University of California, San Francisco (CA): Claudia Villerme

Texas Neurology (TX): Wendy Rodriquez, Shari Hand

Japan: Kitasato University (Kanagawa, Central Honshu, Main island of Japan), Miyagi National Hospital (Miyagi, Northern Honshu), Nagoya University (Aichi, West Central Honshu), Jichi Medical University (Tochigi, East Central Honshu), Kyushu University (Fukuoka, South Japan), Toneyama National Hospital (Osaka, Western Honshu).

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.