Paul Wicks|Jeana Frost
ALS patients request more information about cognitive symptoms
PatientsLikeMe (United States)|PatientsLikeMe (United States)
background purpose thought impact voluntary motor function alsmotor neuron disease mnd seen multisystem disorder minority patients experience mild cognitive dysfunction frontotemporal dementia despite clinical guidelines advocating supplying complete information patients educational materials als often state mind unaffected sought establish much patients caregivers understand als told expect physician would appreciated complete information methods twopart survey administered online als quiz gauged participants knowledge physical psychological aspects als second questionnaire assessed symptoms patients discussed clinician explored patients desire receive information psychological effects results total 247 als patients 87 caregivers participated participants knew less psychological symptoms physical ones 72 correct responses versus 82 paired 333 504 p lt 0001 patients commonly reported told doctor physical symptoms problems walking 85 stiffnesscramps 74 psychological issues like emotional lability 46 cognitive change 11 majority patients 62 carers 71 indicated desire informed cognitive change dementia might occur conclusion als multisystem disorder however despite desire information patients carers healthcare professionals continue primarily address physical consequences disease