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Developing patient-centered care for multiple sclerosis (MS). Learning from patient perspectives on the process of MS diagnosis Learning from Patient Perspectives on the process of MS diagnosis.

Arhie de Ceuninck van Capelle, Leo H Visser, Frans Vosman


Rationale, aims and objectives: The recent history of practices of disclosure of MS diagnoses reflects the transition from paternalistic to patient-centred care (PCC). Numerous concepts have been developed to implement this model of medicine in clinical practice. In PCC, the importance of the patient perspective is paramount. This paper aims to provide a phenomenological examination of the patient perspective on testing for MS.

Methods: Ten people diagnosed with MS were interviewed in open, in-depth interviews. Transcriptions were analysed using a phenomenological approach.

Results: One main theme “Varying perceptions of the diagnosis” and 4 subthemes were identified. The subthemes are: (a) increased awareness of the body, (b) alienating spaces, (c) intensified perceptions of time and (d) intensified perceptions of medical personnel.

Conclusions: The analysis of the patient perspective on the process of MS diagnosis shows intensified and wavering perceptions of body, place, time and medical employees. Accepting patient perceptions as constitutive elements of the doctor-patient relationship may help clinicians make care for persons that are being tested for MS more patient-centred. As a concrete proposal for improvement of current practices we suggest avoiding the transmission of the test results at the first meeting of patient and doctor. Doctor and patient should get acquainted with each other and each other’s perspectives at the beginning of the diagnostic trajectory and together journey towards its conclusion.


Diagnostic techniques and procedures, disclosure, ethics, patient-centered care, perception, person-centered healthcare, qualitative research, relapsing-remitting multiple sclerosis

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