A longitudinal survey of self-assessed health trends in a community cohort of people with multiple sclerosis and their significant others

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Abstract

Background

Studies assessing psychosocial consequences of multiple sclerosis (MS) in the community are scarce; it appears that there are no longitudinal surveys in this area.

Objectives

We prospectively assessed changes in self-perceived health status over 5 years in a community cohort of MS adults.

Methods

The 251 people who participated in a 1999 postal survey were re-assessed in 2004, being sent the Multiple Sclerosis Quality-of-Life-54 (MSQOL-54), the Chicago Multiscale Depression Inventory (CMDI), and a demographic/clinical questionnaire. Health-related quality of life (Short Form-36) and CMDI were also assessed in participants' significant others.

Results

A total of 205 people participated: 14 (5.6%) of the original cohort MS had died and 32 (13%) did not return the questionnaires. A significant other was available for 74% of responders. The proportion requiring constant bilateral walking assistance increased from 16% to 33%. The proportion using housing adaptations increased from 17% to 27%, and the use of daily home care increased from 19% to 28%. Impaired CMDI mood affected 27% of MS and 19% of significant others. Changes in MSQOL-54 were not unidirectional: the domains change in health, physical function, and general health worsened; while social function, mental health, and health distress improved significantly.

Conclusions

MS has a pervasive but inhomogeneous impact on the lives of MS sufferers: the proportion of those severely impaired doubled over the study period; nevertheless in 23% of participants the disease remained mild over a median duration of 11 years. The psychological burden affects not only people with MS but also their significant others.

Introduction

Multiple sclerosis (MS) is a chronic disease of the central nervous system which strikes in the peak years of career and family development and is the commonest cause of neurological activity limitations in young and middle-aged adults. The multiplicity of physical and psychological functions, which can be compromised, and the absence of reliable prognostic indicators have variable effects on individuals' ability to cope. The available treatments have at best a modest benefit on the course of the disease. People with MS are more likely to suffer emotional distress and depression than the general population, are more likely to be unemployed, and more likely to have reduced health-related quality of life [1], [2], [3], [4], [5], [6], [7], [8], [9]. Over the last decade, the importance of outcome assessment from the perspective of the person with MS has been recognised, and the number of publications has increased steadily. Generic health-related quality of life instruments have been applied [3], [10], and several MS-specific instruments have been devised and validated in different languages and cultures [11]. Patients generally welcome the opportunity to provide clinicians with information regarding their health-related quality of life [12], and most postal surveys assessing MS patient-reported health status have high participation rates [9], [10], [12], [13]. Unexpectedly, however, it has been reported that the importance attached to compromise in different health domains may vary considerably between MS sufferers and their neurologists [14].

Most studies assessing the health-related quality of life of people with MS employed convenience samples, which do not provide a picture of the entire spectrum of the disease. However, community-based studies are scarce, and all of cross-sectional design [10], [12], [13], [15], [16], [17]; furthermore, the burden of those who live with MS sufferers has been insufficiently investigated [1], [17].

We carried out a longitudinal assessment of the perceived health status of a cohort of adults with MS living in the Province of Milan, Northern Italy. We also assessed the health status of MS patients' significant others.

Section snippets

Methods

The surveys were approved by the Ethics Committee at the C. Besta National Neurological Institute. Return of a completed questionnaire was taken to indicate informed consent to participate.

Results

Of the 251 patients participating to the 1999 survey, 14 (5.6%) had died over the 5-year period. The causes of death were: MS (4 men and 2 women, mean age 54 years, range 36–67), liver failure (2 men, age 48 and 65 years), sepsis (45-year-old man), prostate cancer (65-year-old man), renal failure (66-year-old woman), diabetes (62-year-old woman), motorcycle accident (30-year-old man), and domestic accident (50-year-old woman).

Thirty-two people with MS (13%) did not return the questionnaires;

Discussion

This is the first study to prospectively assess longitudinal changes in self-perceived health status in a community cohort of people with MS. We found a significant overall deterioration in health status over the 5-year period. The proportion with severe neurological impairment increased from 16% to 33%, and the proportion requiring daily home assistance increased from 19% to 28%. Nevertheless 47 (23%) participants had a mild form of the disease over a median duration of 11 years (range 6–33

Acknowledgments

We thank Dr. Carlo Zocchetti, Director of Information and Quality Control, Lombardy Region, for providing the Regional Health File. We also thank Drs. Roberto Bergamaschi, Angelo Ghezzi, Nerina Mascolo, Clara Milanese, Laura Mendozzi, Alessandra Protti, and Vittorio Martinelli for providing clinical information on their patients, and Don Ward for help with the English. Finally we thank the significant others, general practitioners and above all the people with MS who participated in the study.

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