Dietary responses to a multiple sclerosis diagnosis: a qualitative study

Background/objectives: Multiple sclerosis (MS) is an immune-mediated disease with no known cure and insufficient evidence to support a special therapeutic diet to alter symptom management or disease progression. Several studies have reported dietary changes made by people with MS, but there has been limited investigation into experiences surrounding diet in those recently diagnosed. This study explored responses to diet after a recent diagnosis of MS in people living in Western Australia. Subjects/methods: Eleven adults with MS (mean time since diagnosis 8 months) participated in semi-structured interviews focusing on responses to diet since MS diagnosis. Interviews were transcribed, coded and analysed using grounded theory principles. Results: Three theme responses emerged; (1) the perceived incompatibility of lack of/or generalised dietary advice with disease seriousness at the time of diagnosis; (2) extensive personal research and information seeking with difficulty judging credibility, and (3) self-experimentation with diet to either control MS symptoms or to cure MS. Conclusions: Given the seriousness of the disease, there is a perceived gap in dietary information provided at the time of diagnosis. Healthcare professionals should address concerns with alternative therapeutic diets advertised to treat or cure MS, and clearly convey the reasoning for the general healthy dietary recommendations. This would better align advice with the perceptions about the role of diet in MS, assist people with MS in need of information and minimise dietary self-experimentation. Future research should explore the importance of diet for those who have had MS for a longer period of time

Developing Patient-Centred Care for Multiple Sclerosis (MS). Learning from Patient Perspectives on the process of MS diagnosis

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

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.

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