Progression, Symptoms and Psychosocial Concerns among Those Severely Affected by Multiple Sclerosis: A Mixed-Methods Cross-Sectional Study of Black Caribbean and White British PeopleReportar como inadecuado




Progression, Symptoms and Psychosocial Concerns among Those Severely Affected by Multiple Sclerosis: A Mixed-Methods Cross-Sectional Study of Black Caribbean and White British People - Descarga este documento en PDF. Documentación en PDF para descargar gratis. Disponible también para leer online.

Objective

Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean BC and White British WB people severely affected by MS.

Design

Mixed methods study of 43 BC and 43 WB people with MS PwMS with an Expanded Disability Status Scale EDSS ≥6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index PI and Multiple Sclerosis Severity Score MSSS were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach.

Results

Median EDSS for both groups was 6.5; range: 6.0–9.0. Progression Index PI and Multiple Sclerosis Severity Score MSSS based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease PI F = 4.04, p = 0.048, MSSS F = 10.30, p<0.001. Patients’ reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v-s WB 10.2 years U = 258.50, p = 0.013, EDSS 6∶6.1 years BC v-s WB 12.7 years U = 535.500, p = 0.011, EDSS 8: BC 8.7 years v-s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS F = 9.65, p = 0.003. Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss-confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms.

Conclusions

Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.



Autor: Jonathan Koffman , Wei Gao, Cassie Goddard, Rachel Burman, Diana Jackson, Pauline Shaw, Fiona Barnes, Eli Silber, Irene J. Higgin

Fuente: http://plos.srce.hr/



DESCARGAR PDF




Documentos relacionados