What people with multiple sclerosis perceive to be important to meeting their needs

Abstract

This paper is a report of the findings of a survey in which people with multiple sclerosis identified what they believed would be helpful in meeting their current needs. People with multiple sclerosis have low levels of satisfaction with the health and social care that they receive, but previous studies suggest that they have a broad range of physical, psychological and social needs. A total of 714 people with different levels of disease impact who were participating in a prospective study evaluating multiple sclerosis specialist nurses were asked, 'What one thing would be most helpful in meeting your current needs?' The question was included in the postal questionnaire used for the study (mailed in 2001 and 2002). The overall response rate for usable returns (at both time points) was 42%. Descriptive statistics on the frequency of codes and categories generated by content analysis were compiled and compared in relation to demographic and disease characteristics. A total of 445 people responded to the question. Seven categories were identified: medical treatment (29%, n = 126); socio-environmental support and adaptation (19%, n = 81); enhanced care provision (18%, n = 79); information provision (9%, n = 38); rehabilitation therapies (7%, n = 29); non-professional care (6%, n = 28); and psychological support (3%, n = 15). Nine per cent of responses (n = 39) were not coded as their meanings were unclear. Socio-environmental support, rehabilitation and non-professional care were more frequently identified by those with greater disease impact. Information was identified as a stronger need for those in lower disease impact groups. The findings could provide the basis for developing a multiple sclerosis-specific service satisfaction tool. This could be helpful in assessing the quality of provision, given current variations in the coverage and quality of care provided. Nurses could use such a tool to assess the quality of care in a given population, thereby highlighting gaps in service provision.