A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome.

[locked-in syndrome]

Patients with locked-in syndrome often self-report a higher quality of life than generally expected . This study reports third -person attitudes towards several salient issues on locked-in syndrome .Close-ended survey among conference attendees from 33 European countries . Analysis included chi -square tests and logistic regressions .From the 3332 respondents (33 % physicians , 18 % other clinicians , 49 % other professions ; 47 % religious ), 90 % agreed that patients with locked-in syndrome can feel pain . The majority (75 %) disagreed with treatment withdrawal , but 56 % did not wish to be kept alive if they imagined themselves in this condition (p < 0 .001 ). Religious and southern Europeans opposed to treatment withdrawal more often than non-religious (p < 0 .001 ) and participants from the North (p = 0 .001 ). When the locked-in syndrome was compared to disorders of consciousness , more respondents endorsed that being in a chronic locked-in syndrome was worse than being in a vegetative state or minimally conscious state for patients (59 %) than they thought for families (40 %, p < 0 .001 ).Personal characteristics mediate opinions about locked-in syndrome . The dissociation between personal preferences and general opinions underlie the difference in perspective in disability . Ethical responses to dilemmas involving patients with locked-in syndrome should consider the diverging ethical attitudes of stakeholders .

Diseases
Validation

Diseases presenting "pain" symptom

achondroplasia

acute rheumatic fever

adrenal incidentaloma

adrenomyeloneuropathy

aniridia

aromatase deficiency

carcinoma of the gallbladder

cholangiocarcinoma

coats disease

congenital diaphragmatic hernia

congenital toxoplasmosis

cushing syndrome

cutaneous mastocytosis

cystinuria

dedifferentiated liposarcoma

dentin dysplasia

dracunculiasis

dystrophic epidermolysis bullosa

epidermolysis bullosa simplex

erdheim-chester disease

erythropoietic protoporphyria

esophageal adenocarcinoma

esophageal carcinoma

esophageal squamous cell carcinoma

fabry disease

familial mediterranean fever

focal myositis

hirschsprung disease

hodgkin lymphoma, classical

holt-oram syndrome

junctional epidermolysis bullosa

kabuki syndrome

kindler syndrome

lamellar ichthyosis

liposarcoma

locked-in syndrome

lymphangioleiomyomatosis

malignant atrophic papulosis

neuralgic amyotrophy

oligodontia

oral submucous fibrosis

papillon-lefèvre syndrome

phenylketonuria

pleomorphic liposarcoma

primary hyperoxaluria type 1

proteus syndrome

pyomyositis

scrub typhus

sneddon syndrome

systemic capillary leak syndrome

thoracic outlet syndrome

trochlear dysplasia

typhoid

von hippel-lindau disease

waldenström macroglobulinemia

well-differentiated liposarcoma

wolf-hirschhorn syndrome

This symptom has already been validated