Problems in evaluating the consequences of disabling illness: the case of multiple sclerosis

Abstract

Synopsis There is a need for a method, useful both to the clinician and to the research worker which can assess both the ‘quantity’ and the ‘quality’ of daily life. In this paper two ‘diary’ methods are described for obtaining accounts of daily activities, social contacts and patterns of interaction from people diagnosed as having multiple sclerosis. The information obtained is compared with that derived from a major decennial national survey of the population aged over 4 years and from a selected group of matched non-patient controls. The paper is divided into two parts, each concentrating on one of the techniques. The first is a postal 24-hour written account; the second a detailed tape-recorded interview known as the ‘Standard Day Interview’. Difficulties and advantages in using these approaches to assess both the quantitative and the qualitative changes during disabling illness are discussed and proposals for developing the methods are presented. Indications of substantive variation in the use of time by samples drawn from the ‘healthy’ and from populations with multiple sclerosis are reported.