Impairment, activity, participation, life satisfaction, and survival in persons with locked-in syndrome for over a decade: follow-up on a previously reported cohort

Abstract

Objective: To determine the long-term outcome of patients with stable locked-in syndrome.

Setting: The community.

Design: Retrospective phone survey. This study was further follow-up on a previously reported cohort.

Participants: Twenty-nine persons with locked-in syndrome were included in an initial cohort 11 years prior to the current study. Records or contact with family showed that 16 were deceased. Telephone interviews were made with 1 living patient and the caregivers of 11 others. Public records documented survival of 1 nonrespondent.

Outcome measures: Survival, codified responses regarding functional activities, social activities, and satisfaction with life.

Results: Five-, 10-, and 20-year survival were 83%, 83%, and 40%, respectively. Ten subjects had not been hospitalized in the previous year. Eight lived with family. Little change in impairment occurred, but care was simplified. Improvements in communication related to technology, including computer and Internet access. Eleven left home at least monthly. Caregivers reported seven expressed satisfaction with life; five were occasionally depressed. No deaths could be attributed to euthanasia and no survivor had a "no code" status. One patient wished to die, seven had never considered euthanasia, six had considered and rejected it.

Conclusions: Persons with initially stable locked-in syndrome can have prolonged survival, can live in the community if there is enough support, and have some measure of quality of life.