A novel tool to detect behavioural symptoms in ALS

Abstract

There is need for a valid, sensitive and short instrument capable of detecting and quantifying behavioural changes in ALS, which can be utilized in clinical and research settings. This study aimed to 1) develop and validate such an instrument; 2) verify the most common behavioural symptoms; and 3) investigate longitudinal changes over a six-month period.

Two hundred and nineteen patients were included. The development sample (n = 140) was used to determine the most appropriate items to include in the new tool, the Motor Neuron Disease Behavioural Instrument (MiND-B), via a data-driven approach. An independent sample (n = 79) validated the tool. A more comprehensive sample (n = 50, sub-classified into ALS and ALS plus) was utilized to verify if the MiND-B could detect ALS plus patients. Finally, 20 ALS patients completed the MiND-B after a six-month period.

Apathy, disinhibition and stereotypical behaviour were all found to be very common symptoms in ALS occurring in 75%, 66% and 58%, respectively, of cases. Notably, the MiND-B could identify ALS plus patients without standard cognitive assessments. In conclusion, the MiND-B tool can detect patients with ALS plus reliably, by means of questions to the informant. This test could enable ALS centres to evaluate non-motor symptoms and adapt management and decision-making approaches as necessary.

*only available in the online version of the journal. Please find this material with the following direct link to the article: http://www.informahealthcare.com/(DOI: 10.3109/21678421.2014.896927)

Key words::

• Neuropsychiatric symptoms
• behavioural changes
• assessment
• evaluation
• ALS plus

Acknowledgements

We are grateful to all patients and families who took part in the present study. EM is supported by a National Health and Medical Research Council (NHMRC) Early Career Fellowship; SH is supported by an Early Career Fellowship from the Motor Neurone Disease Research Institute of Australia (MNDRIA); NS is supported by a PhD Scholarship from the MNDRIA; SV, EM and JC are recipients of a Grant-in-Aid from the MNDRIA; MH is a recipient of an Australian Research Council Research Fellowship; JRH and MK are supported by the NHMRC.

The MiND-B is available free for use in clinical and research settings – please contact the corresponding author.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Notes

*only available in the online version of the journal. Please find this material with the following direct link to the article: http://www.informahealthcare.com/(DOI: 10.3109/21678421.2014.896927)