Author(s): Young C.A.; Mills R.J.; Tennant A.
Source: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; 2018; vol. 19 ; p. 38-39
Publication Date: 2018
Publication Type(s): Conference Abstract
Abstract:Background: Given our current inability to cure ALS/ MND or to halt its progression, optimisation of the patient’s quality of life (QoL) remains a key focus of care. Many physical and psychological factors have been reported to influence QoL in ALS/MND, but less is known about how these inter-relate and where interventions should be targeted. Conceptual models can provide clarity, the influential Wilson and Cleary model proposes a causal pathway from symptoms, through functioning and health perceptions, to QoL (1). Objective(s): To examine the relationships between onset type, physical and psychological factors, health perceptions, and QoL in ALS/MND. Method(s): The ongoing UK wide Trajectories of Outcomes in Neurological Conditions (TONiC) study includes patient-reported outcomes on fatigue, dyspnoea, anxiety, disability, and QoL using published measures, which were all transformed to interval-scaled estimates through Rasch analysis. Clinicians recorded demographic information, including onset type and disease duration. These data were modelled, along with a numeric rating scale for perceived health. Result(s): 636 participants contributed to this analysis, 61.3% male, mean age 65.1 years and median duration since diagnosis 11.2 months; 67.3% had limb onset, 27.3% bulbar onset. The first linear model examining fatigue, dyspnoea, disability, perceived health and QoL was miss-specified and required addition of a direct effect from fatigue to perceived health and from disability to QoL. In the amended model, disability is the main contributor to QoL followed by perceived health; fatigue and dyspnoea contribute indirectly (R2=0.53). The second model added anxiety, due to symptoms and disability and in turn affecting perceived health and QoL. This model showed that while disability still plays the major role, anxiety has the second greatest influence (R2=0.57). Both models are invariant for gender, duration and onset type. Discussion and conclusions: These data offer a unique opportunity to explore the lived experience of those with ALS/MND from a quantitative perspective, revealing potential areas for clinical intervention. The results emphasise the importance of optimising functional status, and suggest that targeting anxiety may be an effective means to maintain QoL in the context of a declining physical condition. Symptoms such as breathlessness and fatigue are on the causal pathway to QoL and need active clinical management. The models show that symptoms, disability, perceived health and anxiety all need intervention to enhance QoL for those with ALS/MND, thus highlighting the necessity of multidisciplinary care for this patient group.