Disaster preparedness insufficient among patients, caregivers in Japan
About 25% of patients used a ventilator; half said power supply inadequate
Disaster preparedness, including stockpiling goods, owning and knowing how to use emergency equipment, and being aware of community resources, is lacking among amyotrophic lateral sclerosis (ALS) patients and caregivers, a recent Japanese study suggests.
While patients who needed a ventilator were generally found to be better prepared during power outages or emergency evacuations than those who didn’t, their awareness was still insufficient, the researchers said.
“Academic societies and local governments have been responding to disaster preparedness for patients with intractable diseases,” Osamu Kano, MD, PhD, a professor at Toho University in Tokyo, Japan, and the study’s senior author, said in a press release. “We have taken better measures than before, but it is still not enough. We believe that our paper has the potential to provoke and advance further discussion on disaster preparedness for patients with ALS.”
In ALS, the loss of nerve cells needed for muscle function leads to progressive weakness that affects mobility and breathing. Many ALS patients are wheelchair-bound and require external respiratory support.
Disasters, such as earthquakes, snowstorms, typhoons, or even war, can lead to power blackouts, a big concern for people with ALS, whose life-sustaining equipment relies on electricity. It may also be difficult to transport patients to evacuation centers.
Patients not prepared for a disaster
Because of these, disaster preparedness is critical for ALS patients and may require extra planning. Few reports have investigated how prepared patients are, leading Kano and his colleagues to investigate disaster preparedness among 48 ALS patients and 23 caregivers in Japan where several earthquakes in the last few decades have impacted people receiving at-home respiratory care. The patients (27 men, 21 women; mean age, 60) and the caregivers (mean age, 55.7) responded to a questionnaire.
A quarter of the patients were on a ventilator for respiratory support and 56.5% of the caregivers cared for patients on a ventilator. No patient lived alone — two were hospitalized and the rest lived with caregivers.
Only 28% of survey respondents indicated they were generally prepared for disasters. A significantly lower proportion of those not using a ventilator (10.9%) said they were prepared relative to those that did use one (60%).
About 86% didn’t have plans for communication if phone lines were down. Fewer than half of the responders indicated they had secured transportation (36.6%), had an emergency contact list (28.2%), had human resources for transport (23.9%), were registered with the government as needing support in an evacuation (23.9%), or had contacted local support centers (12.7%).
There was a general lack of awareness about available resources, such as local government support or intractable disease consultation and support centers, the researchers noted.
About a quarter of participants indicated they didn’t stockpile food, water, or medical products, but those who used ventilators were significantly more likely to stockpile medicines and sanitary materials than those who didn’t.
Among those using a ventilator, 52.4% indicated their power supply wouldn’t be maintained for a half a day or longer after an outage.
In the event of an emergency, the government recommends having backup emergency equipment such as an external ventilator battery and a bag-valve mask, which can be used to manually assist breathing. Of those using a ventilator, 60% had a bag-valve mask and 68% had an external battery. About 12% didn’t have any of this equipment. For those who did have it, 75% didn’t know how to use the bag-valve mask and 41% had insufficiently charged external batteries.
“It is necessary not only to have emergency equipment but also to ensure that it can be used,” wrote the researchers, who said their study “shows that patients with ALS and their families without ventilators have a low awareness of disaster preparedness and even the level of awareness among patients with ALS and their families with ventilators is insufficient.”
Efforts are needed to increase preparedness, they said, noting these could include establishing evacuation centers in communities for patients who need ventilation and maintaining a list of people who would require it.
“Support from the government and academic societies is essential for these efforts, and the activities of the Disaster Counter-measures Committee, which is currently underway, should be used to further raise awareness of disaster preparedness,” the researchers said.