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Communicating the diagnosis of multiple sclerosis - a qualitative study

Neuroepidemiology Unit, C Besta National Neurological Institute, Milan, Italy, solari{at}istituto-besta.it

N. Acquarone

Department of Organisation and Development, Province of Genoa, Genoa, Italy

E. Pucci

Department of Neurology, Hospital of Macerata, Macerata, Italy

V. Martinelli

Department of Neuroscience, Scientific Institute and University Ospedale San Raffaele, Milan, Italy

M.G. Marrosu

Department of Neuroscience, University of Cagliari, Cagliari, Italy

M. Trojano

Departments of Neurological and Psychiatric Sciences, University of Bari, Bari, Italy

C. Borreani

Unit of Psychology, Istituto Nazionale per la Cura dei Tumori, Milan, Italy

M. Messmer Uccelli

Department of Social and Health Research, Italian Multiple Sclerosis Society, Genoa, Italy

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 patientneurologist relationship, and also structural and organisational changes. Multiple Sclerosis 2007; 13: 763-769. http://msj.sagepub.com

Key Words: communication • diagnosis • focus group • multiple sclerosis • qualitative research • shared decision-making

This version was published on July 1, 2007

Multiple Sclerosis, Vol. 13, No. 6, 763-769 (2007)
DOI: 10.1177/1352458506074689


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