Assessing patient cognition and behaviour in specialised ALS multidisciplinary care: a study protocol

Background: Awareness of cognitive and behavioural change in deteriorating conditions informs patient and carer approaches to managing their future needs, and assists health professionals to facilitate timely decision-making for care (1). This research proposes a means to identify changes in amyotrophic lateral sclerosis (ALS) patient cognition and behaviour, and determine their impact on patient psychological wellbeing and caregiver burden.
Objectives: The study will evaluate the feasibility of an assessment package developed for use in specialised ALS multidisciplinary clinics, and the contribution the resulting information makes to patient care.
Method: The project examines the following research questions: 1) How can cognitive and behavioural changes associated with ‘ALS plus’ be detected in the specialised ALS multidisciplinary clinic setting? 2) What is the impact of cognitive and behavioural change on patient wellbeing and caregiver burden? 3) How do the results of ‘ALS plus’ assessments contribute to patient care?
The project will be being conducted during 2014 - 2015, as a mixed method study in two phases. Phase 1 is the implementation of the cognitive and behavioural assessment package. Phase 2 is the evaluation of the feasibility of the package. Data collection will take place in three ALS multidisciplinary clinics. Participants are ALS patient and carer pairs, and health professionals. Components of the assessment package are: Addenbrooke's Cognitive Examination-Revised (ACE-R) (2); McGill Quality of Life Questionnaire-Single Item Scale (MQOL-SIS) (3); Kessler Psychological Distress Scale (K10)(4); Motor Neuron Disease Behavioural Scale (MiND-B) (5); and the Caregiver Burden Inventory (CBI)(6).
Conclusions: Psychological and social factors play an important role in ALS patients' wellbeing and quality of life (7). Patient cognition and behaviour should be as comprehensively and proactively assessed as physical status, to identify early changes and provide holistic care. The assessment package seeks to meet these aims, and address a significant deficit in ALS patient care. Information gained from the assessment supports patient and caregiver understanding of ALS, and promotes their engagement in decision-making for symptom
management and quality of life (8). This protocol may have wider application to other conditions involving changes to patient cognition and behaviour. The package has the potential to enhance decision-making, improve service planning and management, and influence policy framing.