The Principles to Promote the Quality of Life of People with Multiple Sclerosis (Quality of Life Principles) is a new advocacy tool for people affected by MS (e.g. people with MS, health professionals and MS societies). The aim of the Principles is to support the improvement of the quality of life (QOL) of people with MS.
The Principles are evidence-based international standards that focus on the common issues that affect the QOL of people with MS, for instance the distress and disability caused by the many symptoms of the disease, the inability in some cases to live at home, the loss of paid employment, the loss of mobility, and the lack of co-ordination between medical and social care. As a result, they are not linked to particular types or stages of MS.
The Principles are designed to be used by any individual, group or organisation involved in making decisions that will affect the QOL of people with MS. They will guide the development and evaluation of existing and proposed services and programmes, irrespective of the provider, and will help to advocate for improvements. Users include international organisations, governments, non-profit and forprofit health, social care and continuing care service providers, employers, national MS societies, researchers, businesses and, most importantly, people affected by MS.
MSIF is preparing three practical guides describing how the Principles can support MS Society programme planning, sharing best practice and influencing public policy.
The development of the Principles was based on a series of interviews, a literature review, the clinical, programmatic, and research experience of the authors, and review by a Work Group and a technical Oversight Group organised by MSIF. The interviews were conducted with a range of international MS and QOL experts, MS clinical providers and people with MS, many of whom were from the UK
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