RESUMEN
OBJECTIVE: To determine the value of health-related quality of life (HRQoL) to predict change in disability status in patients with multiple sclerosis (MS). METHODS: Over a 5-year period, data were collected on HRQoL (Medical Outcomes Study Short Form-36 Health Survey) and disability status (Expanded Disability Status Scale) from a heterogeneous group of 81 Dutch-speaking patients with MS. RESULTS: Multivariate logistic regression analysis showed that HRQoL in the domains of Physical Functioning and Role-Physical Functioning is a significant predictor of change in disability status. CONCLUSIONS: A patient's subjectively perceived health-related quality of life may not be only a clinically and psychosocially meaningful outcome per se but may also be a predictor of objective outcomes such as change in disability status over a substantial period of time.
Asunto(s)
Esclerosis Múltiple/epidemiología , Calidad de Vida , Adulto , Anciano , Bélgica/epidemiología , Evaluación de la Discapacidad , Progresión de la Enfermedad , Femenino , Estudios de Seguimiento , Predicción , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/psicología , Análisis Multivariante , Países Bajos/epidemiología , Pacientes/psicología , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
OBJECTIVES: To determine the quality of life (QoL) of MS patients during the initial 6 months of treatment with interferon-beta (IFN-beta). Furthermore, to determine whether changes in QoL relate to disability, emotional state, therapeutic expectations or side effect profile. BACKGROUND: IFN-beta has been shown to have beneficial effects on the course of MS. Since the aim of IFN-beta treatment is not to cure but to slow down the disease it is important to know how this treatment affects QoL. Surprisingly, the impact of treatment with IFN-beta on QoL measures has not been extensively studied so far. METHODS: Case report documentation, including EDSS, SF-36 and MADRAS scores, of 51 relapsing-remitting MS patients treated with IFN-beta was obtained at baseline and at months 1, 3 and 6. Patients also filled in a form about their expectations of therapy and a questionnaire on side effects. RESULTS: During treatment there was a significant linear trend indicating improvement in the role-physical functioning (RPF) scale of the SF-36 (F(1,50)=4.9, P=0.032). A transient decrease at month 1 was found in the scale for bodily pain, indicating more experienced pain (F(1,50)=19.8, P<0.001). Subgroup analysis showed that patients with most depressive symptoms on the MADRAS at baseline contributed most to the increase in RPF scores over time (F(1,24)=5,6 P=0.026). Furthermore, we found associations between adverse event scores and several domains of QoL. CONCLUSIONS: Our findings suggest that IFN-beta therapy has an impact on QoL of MS patients in that it improves role-physical functioning and transiently worsens experienced bodily pain. QoL during treatment with IFN-beta is influenced by depressive symptoms at baseline as well as by treatment-associated side-effects. Multiple Sclerosis (2000) 6 338 - 342
Asunto(s)
Adyuvantes Inmunológicos/administración & dosificación , Interferón beta/administración & dosificación , Esclerosis Múltiple Recurrente-Remitente/tratamiento farmacológico , Esclerosis Múltiple Recurrente-Remitente/psicología , Calidad de Vida , Adyuvantes Inmunológicos/efectos adversos , Emociones , Estudios de Seguimiento , Estado de Salud , Humanos , Interferón beta-1a , Interferon beta-1b , Interferón beta/efectos adversos , Estudios LongitudinalesRESUMEN
Responsiveness was measured in a number of health-related quality of life (HRQoL) instruments among which two generic (SF-36 and COOP/WONCA Charts) and one disease-specific instrument, the Disability & Impact Profile (DIP). Subjects were 162 multiple sclerosis patients. The following responsiveness indices were used: effect size, standardised response mean and smallest real difference (SRD). The latter measure gives an indication of the magnitude of real change, i.e. change not attributable to 'noise' or 'error' and can thus be used for the interpretation of change scores in clinical practice whereby change scores larger than the SRD value indicate real change. It is assumed that low SRD values indicate high responsiveness. The results confirmed our expectation that the effect size and standardised response mean are probably less suitable for use in slowly progressive diseases, since they use the average change as the numerator. Therefore, the article focused on the SRD. Compared to scales, items measured on a visual analogue scale show high SRD values. The DIP scales generally show lower SRD values compared to scales of other questionnaires. The SRD seems to be a promising new measure to study responsiveness. More research into the interpretation of this measure is necessary.
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Indicadores de Salud , Esclerosis Múltiple , Calidad de Vida , Adulto , Femenino , Humanos , Masculino , PsicometríaRESUMEN
OBJECTIVE: The construction of a brief, valid and reliable HRQoL questionnaire for use in multiple sclerosis patients based on generic and disease-specific HRQoL measures. MATERIAL AND METHODS: The Medical Outcomes Study 36-item Short Form Health Survey (SF-36), COOP/ WONCA Charts, and Disability & Impact Profile (DIP) were used in a longitudinal study in 162 patients with multiple sclerosis. RESULTS: Factor analyses identified 2 underlying dimensions of HRQoL, relating to "physical functioning" and "psychological functioning". Selection of the 3 highest loading reliable scales on each factor resulted in a final questionnaire consisting of 3 scales of the SF-36 and 3 scales of the DIP. In total 40 items were selected; completion time is about 10 min. CONCLUSION: The final questionnaire adequately measured 2 dimensions of HRQoL. The length of the questionnaire is acceptable for patients with MS in view of respondent burden.
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Esclerosis Múltiple/psicología , Calidad de Vida , Encuestas y Cuestionarios/normas , Adulto , Evaluación de la Discapacidad , Femenino , Encuestas Epidemiológicas , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/rehabilitación , Psicometría , Reproducibilidad de los Resultados , Autocuidado , Índice de Severidad de la EnfermedadRESUMEN
The Disability and Impact Profile (DIP) is used for the measurement of quality of life in multiple sclerosis (MS) patients. Data from 211 persons with definite MS from Belgium, Denmark and the Netherlands were used to address three questions. To what extent do the impairment ratings and their complementary weighted scores share common variance? What is the factor structure of the weighted scores? To what extent do disease-related information and information from psychological questionnaires offer concurrent validity for the factors? Correlations between impairment ratings and the weighted item scores were high; for most items the complementary ratings of impact do not supplement information provided by impairment ratings. The DIP weighted scores can be represented to some extent by three independent dimensions: a motor (skeletal movement) or displacement ability factor, a factor relating to sensory-cognitive intactness and a psychological well-being factor. A two-factor solution provides a first factor identical to that of the three-factor solution and a second factor representing psychological well-being. The two factors correlate well with instruments measuring disability and with satisfaction versus emotional distress. Provisional scales based on the factors were constructed.
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Personas con Discapacidad/psicología , Esclerosis Múltiple/psicología , Calidad de Vida , Perfil de Impacto de Enfermedad , Encuestas y Cuestionarios/normas , Actividades Cotidianas , Adulto , Anciano , Bélgica , Dinamarca , Análisis Factorial , Femenino , Humanos , Masculino , Salud Mental , Persona de Mediana Edad , Esclerosis Múltiple/fisiopatología , Países Bajos , Reproducibilidad de los ResultadosRESUMEN
Seventy-three Dutch and Flemish patients with definite multiple sclerosis (MS) were assessed by means of the Disability and Impact Profile (DIP), which is a 2 x 39 item, self-administered questionnaire with parallel questions about disabilities and their importance for or impact on the patient, resulting in a profile of weighted scores. It was designed as a tool for clinical assessment of quality of life (QoL) domains in MS patients. Group data showed more than 50% loss on weighted scores for "walk", "clean home", "work" and "worry about deterioration". In individual patients a median of 7 (range 0-23) major disruptions of quality of life (MD-QoL: loss on weighted score more than 50%) was found. Prevalence of MD-QoL in more than 10% of the patients was found for as many as 31 disabilities and > 50% for 3 ("clean home", "work" and "worry about deterioration"). Results in the MS group were compared with available data from 25 patients with rheumatoid arthritis (RA) and 25 patients with a spinal cord lesion (SCl). Weighted scores of "read", "memory" and "concentration" were significantly lower in the MS group than in the RA and SCl groups. Significantly lower weighted scores in both the MS and RA groups were found for "worry about deterioration", "physical endurance", "clean home", "work", "see" and "write". In conclusion, major disruptions in many domains of QoL were found in MS patients. Weighted score profiles for MS were in accordance with clinical manifestations. Unlike Kurtzke's Extended Disability Status Scale, DIP assesses a wide range of potentially MS-affected human activities, and also takes into account the subjective perception of disabilities.