Living with locked-in syndrome: an explorative study on health care situation, communication and quality of life.
OBJECTIVE
to explore and describe the health care situation, the use of aids, the way of communicating and the quality of life of Locked-in syndrome patients in Flanders (Belgium) and to collect information on their fulfilled and unfulfilled needs.


METHODS
in depth interviews with eight LIS-patients by means of an extensive questionnaire consisting of five parts: (i) general information and medical history, (ii) health care, rehabilitation and follow-up, (iii) speech and communication, (iv) quality of life, (v) needs and problems experienced.


RESULTS
the patients' condition, mostly caused by ischemic stroke, persisted for a mean period of 6 years 8 months. Their mean age was 41;10 years. At the moment of our study all the patients were living at home. Care was provided by an extensive care team. Some recovery of head and neck movements was mentioned, recovery of upper and lower limb mobility however was very limited. Most patients use an alphabet system to communicate, all of them had access to and made use of a PC with internet connection. Except for the domain of physical functioning, the quality of life scores of our patient group are rather high. As for unfulfilled needs, half of the patients experience a lack of information on their condition and a lack of appropriate information on (communication) aids.


CONCLUSIONS
most results seem to be in line with those of other studies, though larger scale and follow-up studies are needed to confirm these findings.
Department of Logopedic and Audiological Sciences, Katholieke Universiteit Leuven, Leuven, Belgium.
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L
Snoeys
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G
Vanhoof
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E
Manders
D000328:Adult; D000368:Aged; D001530:Belgium; D003142:Communication; D003143:Communication Devices for People with Disabilities; D003147:Communication Disorders / Q000209:etiology / Q000534:rehabilitation; D003695:Delivery of Health Care; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D011782:Quadriplegia / Q000523:psychology* / Q000534:rehabilitation*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires