Experiences of Diagnosis and Treatment Among People With MS
The aim of this qualitative study performed by the Applied Research Centre in Health and Lifestyle Interventions in Coventry, UK, was to examine patients’ experiences of being diagnosed with MS, the information that they were given at this time, subsequent treatment, and its impact on their lives. 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. 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. The article concludes that 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.
Available from: http://www.pubmed.gov PMID: 18373567)
July 25th, 2008 at 4:33 pm
My doctor entered the examining room and told me without delay that I had MS. He gave me a printout of material about MS and told me to call with questions. That was it. I called my local MS society and cried into the phone that I was just diagnosed, was I going to die? I’ll never foeget what the director said: “Take a few deep breaths. We’ll help get you through this.” That was March 13, 2002. I’m still working, walking, enjoying life. The National MS Society would be the contact I’d recommend to anyone who’s just been diagnosed. Mot husband, friend, but a clear voice who deals with clients every day, who has some people on staff who have MS, too. It made all the difference in the world. And that doctor? He works in research, now.