Co-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease.

Background: Parkinson's disease is a complex progressive neurodegenerative disease increasing globally. Self-management interventions have shown promise in improving the quality of life for people with chronic conditions. This paper aims to describe the development processes and the core components of a facilitated self-management toolkit to support people with Parkinson's disease to self-manage their condition.

External Factors Modulating Pain and Pain-Related Functional Impairment in Cervical Dystonia.

Background: Little is known about factors modulating pain and pain-related functional impairment in isolated cervical dystonia (CD).

Objective: The aim was to assess the prevalence and interrelationship between pain-modulating factors and pain-related determinants of functional impairment and quality of life in CD.

Methods: We analyzed pain-aggravating and pain-relieving external factors, the degree of pain-related functional impact on routine activities, and the relationship between these and pain severity, using cross-sectional data collected using the Pain in Dystonia Scale (PIDS) from 85 participants with CD.

Quick MSA-QoL: A validated, abbreviated health-related quality of life questionnaire for use in Multiple System Atrophy.

Background: Health-related quality of life is an important patient-reported outcome, which can be assessed using instruments such as the Multiple System Atrophy (MSA) Quality of Life (MSA-QoL) scale. However, at 40-items its length can prove burdensome, particularly to patients with a disease such as MSA. This can contribute to respondent burden and poor-quality response data.

End-of-life care in multiple system atrophy: UK survey of patients and families.

Objectives: People with multiple system atrophy (MSA) and their carers may have many concerns about their disease and the future. This survey of people with MSA and their carers aimed to increase understanding of end-of-life care and palliative care for this group.

Methods: A survey was undertaken by the MSA Trust of people living with MSA and carers of those with the condition between August and October 2022.