RESUMEN
OBJECTIVE: Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. METHOD: The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). RESULTS: During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. SIGNIFICANCE OF RESULTS: Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.
Asunto(s)
Consejo/métodos , Líneas Directas/estadística & datos numéricos , Esclerosis Múltiple/terapia , Cuidados Paliativos/métodos , Estudios de Factibilidad , Femenino , Alemania , Humanos , Masculino , Proyectos PilotoRESUMEN
In the last years there has been a growing interest in self assessment of Health-related quality of life (HRQOL). Studies show a reduced HRQOL in patients with Multiple Sclerosis (MS). A sample of n=3 157 members of the German Multiple Sclerosis Association (71.7% women, aged 48.2 years on average) was analyzed regarding the correlation between coping styles and HRQOL in MS patients. The findings show reduced HRQOL in MS patients in comparison to the general population in West Germany. MSQOL-54- and MSIS-29-sumscales and FKV-LIS-scales "depressive coping" and "minimizing importance" correlate significant: a depressive or trivializing coping style accompanies with reduced mental and physical HRQOL.
Asunto(s)
Adaptación Psicológica , Esclerosis Múltiple/psicología , Calidad de Vida , Adulto , Anciano , Depresión/etiología , Depresión/psicología , Femenino , Alemania , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Autoevaluación (Psicología) , Encuestas y CuestionariosRESUMEN
BACKGROUND: Progression in disability as measured by increase in the Expanded Disability Status Scale (EDSS) is commonly used as outcome variable in clinical trials concerning multiple sclerosis (MS). In this study, we addressed the question, whether there is a linear relationship between disability status and health related quality of life (HRQOL) in MS. METHODS: 7305 MS patients were sent a questionnaire containing a German version of the "Multiple Sclerosis Quality of Life (MSQOL)-54" and an assessment of self-reported disability status analogous to the EDSS. 3157 patients participated in the study. Patients were allocated to three groups according to disability status. RESULTS: Regarding the physical health composite and the mental health composite as well as most MSQOL-54 subscales, the differences between EDSS 4.5-6.5 and EDSS > or = 7 were clearly smaller than the differences between EDSS < or = 4 and EDSS 4.5-6.5. CONCLUSION: These results indicate a non-linear relationship between disability status and HRQOL in MS. The EDSS does not seem to be interval scaled as is commonly assumed. Consequently, absolute increase in EDSS does not seem to be a suitable outcome variable in MS studies.
Asunto(s)
Personas con Discapacidad/psicología , Esclerosis Múltiple , Calidad de Vida , Perfil de Impacto de Enfermedad , Adulto , Personas con Discapacidad/clasificación , Femenino , Alemania , Humanos , Masculino , Persona de Mediana Edad , Autoevaluación (Psicología) , Encuestas y CuestionariosRESUMEN
AIM: Research on life circumstances, quality of life (QOL) and coping behavior in mothers with multiple sclerosis (MS). METHOD: Anonymous standardised questionnaire sent to 7,050 members of a section of the German MS Association (response rate 44.8%). Comparison of 482 mothers with MS (children aged < 18 years) with 607 childless women with MS. RESULTS: No statistically significant differences concerning age, MS course, complaints or number of exacerbations. Mothers with MS more frequently had a relationship, a higher monthly net income, were less employed, EDSS-score was lower and disease duration shorter. In QOL mothers with MS showed better social aspects even after multivariate adjustment for sociodemographic and disease-related variables. Influencing parameters on the social area of QOL were employment status, age, monthly household net income and disability. In their coping behavior mothers tended more to "religiosity/search for sense in life". CONCLUSION: There were several differences in sociodemographic data, QOL and coping behavior factors between mothers and childless women with MS. However, if motherhood itself has an influence on QOL and coping can not be derived from our data but there are some hints that motherhood seems to be no potential problem for living with the disease. Further research upon this topic is needed.