Communicating the diagnosis of a multiple sclerosis - A qualitative study

Alessandra Solani, N. Aquarone, E. Pucci, V. Martinelli, M. G. Marrosu, M. Trojano, C. Borreani, M. Messmer Uccelli

Research output: Contribution to journalArticlepeer-review

Abstract

Studies on communicating the diagnosis of multiple sclerosis (MS) are few, and all reveal communication and information deficits. We explored the personal experience of diagnosis communication of people with MS and health professionals, using a qualitative methodology. Data were obtained from two sets of focus group meetings (FGM) with people with MS (total 23; 16 females; age range: 23-70) and one FGMs with health professionals (four neurologists, three psychologists, two nurses). The methods of framework analysis were applied to meeting transcripts to identify key topics and categories. The experience of communicating/ receiving an MS diagnosis was highly varied; all patients reported the moment as powerfully evocative and unforgettable. Very poor levels of support and information were sometimes given. Although diagnosis communication had improved in more recent experience, all felt it should be further improved with appropriate setting (privacy, no interruptions, sufficient time), information tailored to the individual, and continuity of care. Such improvements imply a more meaningful patient-neurologist relationship, and also structural and organisational changes.

Original languageEnglish
Pages (from-to)763-769
Number of pages7
JournalMultiple Sclerosis Journal
Volume13
Issue number6
DOIs
Publication statusPublished - Jul 2007

Keywords

  • Communication
  • Diagnosis
  • Focus group
  • Multiple sclerosis
  • Qualitative research
  • Shared decision-making

ASJC Scopus subject areas

  • Clinical Neurology

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