Multiple sclerosis (MS) is a chronic, disabling disease affecting approximately 2.5 million people worldwide. Although the impact of the disease varies with the type of MS, with the individual, and often from day-to-day, common symptoms include:
- fatigue,
- bladder, and bowel disorders,
- vision problems,
- tremor,
- spasticity,
- abnormal speech,
- swallowing disorders,
- sexual dysfunction,
- difficulty performing basic everyday activities, (such as eating, bathing, dressing, and housekeeping,)
- cognitive impairment,
- mobility problems,
- pain, and
- depression.
As a result of these symptoms, MS can substantially and adversely affect an individual’s quality of life (QOL). In addition, many people with MS leave the labour force and must depend on relatives or government programmes for financial and other support.
To enhance the lives of people with MS, this report presents “principles” to improve their QOL. While these principles include health care, they reach far beyond medical care to a broad range of other domains. Moreover, these principles are not primarily focused on assessing or measuring QOL. Rather, they are designed to guide the development and evaluation of services and programmes that are provided by governments, for-profit and non-profit health and social service providers, employers, and other organizations for people with MS.
These principles are also designed to be used by:
- international organizations,
- national MS societies,
- people with MS and their families,
- governments,
- health and continuing care providers,
- researchers,
- businesses, and
- others to evaluate existing and proposed services and programmes and to advocate for improvements.
The principles are problem based. As such, they focus on the common issues that affect QOL for 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 coordination between medical and social care. As a result, the principles are not linked to particular types or stages of MS.
It should always be kept in mind that the ultimate goal is a cure for MS. However, until a cure is found and can be broadly implemented, it is important to work to maintain or improve QOL for people with MS, utilizing a broad range of approaches such as those described in these principles. 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 technical Oversight Group organized by the Multiple Sclerosis International Federation (MSIF).
The interviews were conducted with a range of international MS and QOL experts, MS clinical providers, and people with MS; a list of people interviewed is presented in the Acknowledgements. The Oversight Group and Work group includes MS experts and people with MS representing a range of MSIF member countries; the members of the Oversight Group and Work Group are listed in the Acknowledgements.
The literature review included relevant journal articles, MS clinical textbooks, publications of national MS societies, and relevant web-based publications; a list is included in the References section. The References section also includes a level of evidence assigned to each publication.
The level of evidence definitions used in this literature review are as follows:
- 1a Meta-analysis of randomised controlled trials 1b
- Randomised controlled trial 2a
- Controlled study, without randomization 2b
- Quasi-experimental study 3 Non-experimental,
- descriptive study (e.g., comparative study, correlation study, case study) 4
- Expert committee report,
- opinion and/or experience of respected authority
The principles are presented in a way that reflects the state of affairs when they have been fulfilled. This active voice is meant to empower people with MS and move away from passive formulations in which things are done “to” or “for” people with MS. Thus, the principles describe programmes and policies that work well and meet the needs of people with MS rather than being exhortations of what things “should be” done.
The principles are organized into the following ten themed sections:
1 Independence and Empowerment
2 Medical Care
3 Continuing (Long-Term or Social) Care
4 Health Promotion and Disease Prevention
5 Support for Family Members
6 Transportation
7 Employment and Volunteer Activities
8 Disability Benefits and Cash Assistance
9 Education
10 Housing and Accessibility of Buildings in the Community
Development of the principles was guided, in part, by the first five domains included in the World Health Organization’s QOL framework, including physical health, psychological health, level of independence, social relations, and the environment. They were used as references to ensure that the scope of the principles would include all aspects of QOL relevant to people with MS.
Each section begins with a general statement supporting its theme and an introductory discussion of key issues. The principles are then presented in numbered paragraphs. Citations at the end of each principle indicate the references that provide supporting evidence.
With the aid of 15 collaborating centres around the world, WHO developed the WHOQOL- 100 framework. In this, WHO defines Quality of Life as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept, affected by the person’s physical health, psychological state, level of independence, social relationships, and to salient features of their environment.
The WHOQOL-100 framework was intended as a tool for general use in medical practice, research, audit, and policy making.