Experiences of diagnosis and treatment among people with multiple sclerosis

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Abstract

Rationale, aims and objectives

The aim of this qualitative study was to examine patients' experiences of being diagnosed with multiple sclerosis (MS), the information that they were given at this time, subsequent treatment and its impact on their lives.

Method

Data were collected through semi-structured interviews with 24 people with MS. The use of interviews allowed participants' experiences to be explored in depth. Participants were recruited by the MS Society through membership details and through a press release in a local newspaper. Telephone interviews lasted between 30 and 60 minutes, were tape-recorded and transcribed verbatim. Data were analysed using thematic content analysis.

Results

The majority of participants were female (n = 17), with ages ranging from 35 to 72 years. Disease duration ranged from 1 to 37 years. Many participants' diagnosed before and after 2000 had experienced long delays in diagnosis. At the point of diagnosis, participants had to make sense of and understand their diagnosis often with insufficient support. Some participants expressed anger about the way they had been given their diagnosis. Many felt they had not received sufficient information about their illness at this time and had responded by conducting their own searches for information to satisfy this need.

Conclusion

Improving the way in which doctors communicate with patients experiencing diagnostic delay and at the point of diagnosis deserves further study, in order to avoid later adjustment problems.

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