What is locked-in syndrome?
Locked-in syndrome is a rare disorder most often due to a stroke in the brain stem, a part of the brain with many nerve fibers concentrated in a small area. A patient with locked-in syndrome is awake and conscious, but unable to respond because the whole body is paralyzed. The person cannot speak and has no body language, while sight, hearing and cognitive abilities are well functioning. Communication is possible by using augmentative and alternative communication tools.
The national unit’s assignment:
- Provide health care for all patients in need of the specialized service. All stroke units in Norway are obliged to refer patients with locked-in syndrome to the National Unit.
- Observe and disseminate treatment results.
- Participate in research and establish research network.
- Contribute to relevant education of health-care professionals.
- Provide counseling and advice for users and for health and other relevant services.
- Ensure equal access to the service.
- Contribute to implementation of national guidelines and evidence-based practice.
How do we define locked-in syndrome?
Which patients do fall under the responsibility of the Norwegian national service?
To define locked-in syndrome, and to diagnose the condition, is not easy.
The national unit has the assignment to serve patients with locked-in due to acquired brain injury, i.e. not as a consequence of a congenital or degenerative condition. We use the following functional criteria for our operational definition of locked-in syndrome. All criteria have to be present:
- Large paralysis in all 4 extremities
- Severe communication impairment
- Normal or close to normal cognition (at the very least oriented for time, place and situation)
- Completely depending on help in activities of daily living
Furthermore, the condition has to be (or expected to be) permanent or long-lasting.
With regard to in-patient services at Sunnaas Rehabilitation Hospital, other relevant factors are the patient’s motivation, medical stability (especially with regard to respiration) and no other severe conditions implying pure prognosis.
An interdisciplinary team including MD, nursing staff, occupational therapist, physiotherapist, speech and language therapist, specialist in augmentative and alternative communication, social worker, and neuropsychologist, provides our rehabilitation services.
The clinical services include:
Counseling of stroke unit personnel by physical visit and/or videoconference; information to personnel, patient and relatives; start-up of rehabilitation measures.
Direct transfer to in-patient rehabilitation at Sunnaas Rehabilitation Hospital as soon as patient is medically stable.
Phase of transfer to community:
Transfer meetings with the local team physically and by videoconferences; teaching and guiding of local team; follow-up visits at the patient’s location after discharge.
Yearly follow-up by phone, videoconference or visit; re-admission to renewed in- or out-patient services as required.
Gathering with overnight stay for a group of patients with locked-in syndrome. The program includes exchange of experiences, information and a variety of activities.
- Educational and counseling services for patients, relatives and health care and other personnel including brochures, website, lectures, media contributions etc.
- Seminars and webinars for local teams and relatives.
- Internal quality register for locked-in syndrome.
As to 2020, a PhD-project (Helle Walseth Nilsen MD; main supervisor Frank Becker MD PhD) is currently being established.
The main aim of the project will be to describe the locked-in population in Norway, both with regard to medical aspects related to the condition and depicting life with locked-in syndrome. We will investigate everyday life with the condition, levels of activity and participation, medical and rehabilitation services received, aids used, and aspects of self-perceived health. As part of this study, we also seek to perform a prospective investigation of in collaboration with colleagues in Denmark and Sweden.