ALS patients request more information about cognitive symptoms
Version of Record online: 6 MAR 2008
© 2008 The Author(s)
European Journal of Neurology
Volume 15, Issue 5, pages 497–500, May 2008
How to Cite
Wicks, P. and Frost, J. (2008), ALS patients request more information about cognitive symptoms. European Journal of Neurology, 15: 497–500. doi: 10.1111/j.1468-1331.2008.02107.x
- Issue online: 18 MAR 2008
- Version of Record online: 6 MAR 2008
- Received 14 November 2007 Accepted 28 January 2008
- decision making;
- emotional lability;
- frontotemporal dementia;
- informed patient choice
Background and purpose: Once thought to impact only voluntary motor function, ALS/Motor neuron disease (MND) is now seen as a multi-system disorder in which a minority of patients experience mild cognitive dysfunction or frontotemporal dementia. Despite clinical guidelines advocating supplying complete information to patients, educational materials on ALS often state that the mind is unaffected. We sought to establish how much patients and caregivers understand about ALS, what they have been told to expect by their physician, and if they would have appreciated more complete information.
Methods: A two-part survey was administered online. An ‘ALS quiz’ gauged participants’ knowledge of physical and psychological aspects of ALS. A second questionnaire assessed which symptoms patients had discussed with their clinician and explored patients’ desire to receive information on psychological effects.
Results: A total of 247 ALS patients and 87 caregivers participated. Participants knew less about psychological symptoms than physical ones (72% correct responses versus 82%; paired t(333) = −5.04, P < 0.001). Patients commonly reported being told by their doctor about physical symptoms such as problems walking (85%) or stiffness/cramps (74%) but not psychological issues like emotional lability (46%) or cognitive change (11%). The majority of patients (62%) and carers (71%) indicated a desire to be informed that cognitive change or dementia might occur.
Conclusion: ALS is a multi-system disorder. However, despite a desire for more information from patients and their carers, healthcare professionals continue to primarily address only the physical consequences of the disease.