A longitudinal Discrete Choice Experiment of the preferences for health services of ALS patients and their carers

Background Discrete Choice Experiments (DCEs) are increasingly used in healthcare research to assess service user preferences. The DCE method involves asking participants to state their preference over alternative hypothetical... [ view full abstract ]

Background
Discrete Choice Experiments (DCEs) are increasingly used in healthcare research to assess service user preferences. The DCE method involves asking participants to state their preference over alternative hypothetical scenarios. To our knowledge, this is the first study to apply the DCE methodology longitudinally. Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease with an unknown cause. Annual incidence in Ireland is approximately 2.6 per 100,000.

Aims and Objectives
The study aimed to describe the preferences for health services of ALS patients and their carers accessing a national multidisciplinary clinic and to determine how these preferences change with disease progression.

Methods
Participants were presented with sets of hypothetical health service packages and asked to choose which package they preferred. Alternatives were described by several attributes and responses were used to determine the relative importance of these attributes.
Attributes included price of services, waiting times at the ALS clinic, who makes decisions on care, and emotional support. A fractional factorial design was constructed and results were analysed using random effects probit models. This experiment was repeated on two more occasions as disease progressed. Separate analyses were carried out for each time point, followed by a longitudinal analysis. For time one 100 patients and 60 carers participated, at time two 60 patients and 32 carers and at time three 45 patients and 24 carers. Ethical approval for this study was granted by the author’s institution.

Findings
Patients and carers differ in their preferences for health services at time 1. These preferences changed at times 2 and 3 as disease progressed. Patients and carers differed in their preferred attributes, with carers focussing on the attributes regarding place of care and who provides personal care. Both patients and carers felt strongly about receiving emotional support from a counsellor in time 3. Patients strongly disliked this, while carers showed a strong preference for receiving this support.

Conclusions and Implications
For the first time, we present the results of a DCE applied longitudinally and conclude that the preferences of ALS patients and their carers change as disease progresses, and both prioritise different aspects of care.