Interventions to promote oral nutritional behaviours in people living with neurodegenerative disorders of the motor system: A systematic review

Abstract

Background & Aims Weight loss is common in people with neurodegenerative diseases of the motor system (NDMS), such as Parkinson's disease and Amyotrophic Lateral Sclerosis, and is associated with reduced quality of life, functional ability and survival. This systematic review aims to identify interventions and intervention components (i.e. behaviour change techniques [BCTs] and modes of delivery [MoDs]) that are associated with increased effectiveness in promoting oral nutritional behaviours that help people with NDMS to achieve a high-calorie diet. Methods 'human', 'face-to-face' and 'somatic therapy'. However, the robustness of these findings are low due to small number of studies, small sample sizes and large between-study variability. Conclusions Despite the limited evidence, these findings may help inform the development of more effective interventions to promote oral nutritional behaviours in people with NDMS. However, further research is needed to demonstrate which interventions, or intervention components, yield most benefit.

The Current State and Future Directions of Swallowing Care in Amyotrophic Lateral Sclerosis

“…Therefore, when swallowing becomes impaired, individuals with ALS may choose to maintain nutrition orally, artificially through the placement of a feeding tube, or through a combination of both. Before resorting to more invasive means of nutrition, the patient and healthcare team may opt for an oral route [9] with SLP support and individualized counseling through standard care or with a dietitian [8]. However, often these strategies are only effective temporarily.…”

“…When making nutrition recommendations, the healthcare team should consider patient-related factors including psychological adjustment, need for control, understanding of ALS and related complications, and psychosocial aspects of eating [28]. Although artificial nutritional management discussions should begin early in the disease process to reduce weight loss [9], research suggests that individuals have varying positive and negative responses to early discussions on this topic [28]. To encourage patient engagement in the nutritional management plan, healthcare teams should empower the individual through education about ALS and related swallowing impairments.…”

Psychological interventions for people with motor neuron disease: a scoping review

“…In particular, when developing interventions, attention should be paid to the psychosocial, emotional, and physical changes that can occur in pwMND to ensure that the approach is relevant and acceptable. When evaluating interventions, attention should be paid to participants' levels of distress at the beginning of therapy, site of MND onset, emotional perception and regulation difficulties (10,(58)(59)(60)(61), psychosocial issues (65,73,74), cognitive and behavioural change (75), and loss of perceived control (10,(28)(29)(30). It would also be helpful for studies to identify the proposed mechanisms of change that affect outcomes (e.g., alliance, behaviour change, present moment focus) and include consideration of which psychological outcomes are being targeted (e.g., anxiety, depression, quality of life, or other).…”

Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach

“…During the entire disease course, caregivers of patients with ALS could need to acquire management skills for supporting patients in executing cough assistance and using home ventilators, and/or promoting nutritional interventions and enteral feeding ( 17 , 18 ). Therefore, patients with ALS need to have support from informal caregivers ( 10 ).…”