Japanese and American ALS patient preferences regarding TIV (tracheostomy with invasive ventilation): a cross-national survey.
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.
New York State Psychiatric Institute and Department of Psychiatry, Columbia University , New York , USA.
Judith
J
Rabkin
Mieko
M
Ogino
Raymond
R
Goetz
Martin
M
McElhiney
Jonathan
J
Hupf
Daragh
D
Heitzman
Terry
T
Heiman-Patterson
Robert
R
Miller
Jonathan
J
Katz
Catherine
C
Lomen-Hoerth
Takashi
T
Imai
Naoki
N
Atsuta
Mitsuya
M
Morita
Takahisa
T
Tateishi
Tsuyoshi
T
Matsumura
Hiroshi
H
Mitsumoto
D000328:Adult; D000368:Aged; D000569:Americas / Q000453:epidemiology; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications / Q000523:psychology / Q000628:therapy; D000704:Analysis of Variance; D017028:Caregivers / Q000523:psychology; D003431:Cross-Cultural Comparison; D005260:Female; D006306:Health Surveys; D006801:Humans; D007564:Japan / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D057240:Patient Preference / Q000523:psychology*; D012121:Respiration, Artificial / Q000379:methods / Q000523:psychology / Q000706:statistics & numerical data; D012131:Respiratory Insufficiency / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D011795:Surveys and Questionnaires; D014139:Tracheostomy / Q000379:methods / Q000523:psychology / Q000706:statistics & numerical data
ALS; Japanese/American survey; TIV; end-of-life preferences