RESUMO
BACKGROUND: Hand dysfunction is common in multiple sclerosis (MS). Recent interest has focused on incorporating patient-reported outcome (PRO) instruments into clinical trials. Nevertheless, examinations are rare in MS of existing manual ability measures. OBJECTIVES: The objective of this paper is to evaluate the 23-item ABILHAND, developed for use after stroke, in people with MS, comparing the findings from two psychometric approaches. METHODS: We analysed ABILHAND data from 300 people with MS using: 1) traditional psychometric methods (data completeness, scaling assumptions, reliability, internal and external construct validity); and 2) Rasch measurement methods (including targeting, item response category ordering, data fit to the Rasch model, spread of item locations, item scoring bias, item stability, reliability, person response validity). RESULTS: Traditional psychometric methods implied ABILHAND was reliable and valid in this sample. Rasch measurement methods supported this finding. The three-category scoring function worked as intended and item fit to Rasch model expectations was acceptable. The 23 items (location range -3.16 to +2.73 logits) mapped a continuum of manual ability. Reliability was high (Person Separation Index (PSI) = 0.95). CONCLUSION: Both psychometric evaluations supported ABILHAND as a robust manual ability PRO measure for MS. Rasch measurement methods were more informative and, consistent with its role of detecting anomalies, identified ways of advancing further ABILHAND's measurement performance to reduce any potential for type II errors in clinical trials.
Assuntos
Atividades Cotidianas , Avaliação da Deficiência , Mãos/inervação , Destreza Motora , Esclerose Múltipla/diagnóstico , Inquéritos e Questionários , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/psicologia , Valor Preditivo dos Testes , Prognóstico , Psicometria , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Análise e Desempenho de TarefasRESUMO
BACKGROUND: Few upper limb functioning patient rating scales have been used in multiple sclerosis (MS) research and none developed specifically for people with MS. OBJECTIVES: In this study, we examined the Disabilities of the Arm, Shoulder and Hand (DASH) to determine its utility as a useful, scientifically robust and clinically meaningful tool in MS. METHODS: DASH data from 300 people with MS underwent two independent phases of psychometric analyses: (1) a traditional psychometric analysis (including data quality, scaling assumptions, reliability and validity); and (2) a Rasch analysis (including response option thresholds ordering, tests of fit, spread of item locations, residual correlations, and person separation index). RESULTS: Overall, the traditional psychometric analysis supported the DASH as a reliable and valid measure of upper limb function in people with MS. However, several issues were raised by the Rasch analysis that questioned the validity of the DASH, including misfit in 13/30 items, disordered item response option thresholds for 9/30 items, and six pairs of items with high residual correlations (> 0.60). CONCLUSION: Rasch analysis highlights areas for potential improvement for the use of the DASH. Our findings further support our previous arguments that traditional psychometric methods provide weak scale evaluations and can mislead clinicians as to the reliability and validity of outcome measures.
Assuntos
Avaliação da Deficiência , Esclerose Múltipla/diagnóstico , Psicometria , Perfil de Impacto da Doença , Extremidade Superior/fisiopatologia , Atividades Cotidianas , Adulto , Braço/fisiopatologia , Inglaterra , Feminino , Mãos/fisiopatologia , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/psicologia , Valor Preditivo dos Testes , Estudos Prospectivos , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Ombro/fisiopatologia , Inquéritos e QuestionáriosRESUMO
Spasticity is most commonly defined as an inappropriate, velocity dependent, increase in muscle tonic stretch reflexes, due to the amplified reactivity of motor segments to sensory input. It forms one component of the upper motor neuron syndrome and often leads to muscle stiffness and disability. Spasticity can, therefore, be measured through electrophysiological, biomechanical and clinical evaluation, the last most commonly using the Ashworth scale. None of these techniques incorporate the patient experience of spasticity, nor how it affects people's daily lives. Consequently, we set out to construct a rating scale to quantify the perspectives of the impact of spasticity on people with multiple sclerosis. Qualitative methods (in-depth patient interviews and focus groups, expert opinion and literature review) were used to develop a conceptual framework of spasticity impact, and to generate a pool of items with the potential to convert this framework into a rating scale with multiple dimensions. This item pool was administered, in the form of a questionnaire, to a sample of people with multiple sclerosis and spasticity. Guided by Rasch analysis, we constructed and validated a rating scale for each component of the conceptual framework. Decisions regarding item selection were based on the integration and assimilation of seven specific analyses including clinical meaning, ordering of thresholds, fit statistics and differential item functioning. The qualitative phase (17 patient interviews, 3 focus groups) generated 144 potential scale items and a conceptual model with eight components addressing symptoms (muscle stiffness, pain and discomfort and muscle spasms,), physical impact (activities of daily living, walking and body movements) and psychosocial impact (emotional health, social functioning). The first postal survey was sent to 272 people with multiple sclerosis and had a response rate of 88%. Findings supported the development of scales for each component but demonstrated that five item response options were too many. The 144-item questionnaire, reformatted with four-item response options, was administered with four validating instruments to an independent sample of 259 people with multiple sclerosis (response rate 78%). From the responses, an 88-item instrument with eight subscales was developed that satisfied criteria for reliable and valid measurement. Correlations with other measures were consistent with predictions. The 88-item Multiple Sclerosis Spasticity Scale (MSSS-88) is a reliable and valid, patient-based, interval-level measure of the impact of spasticity in multiple sclerosis. It has the potential to advance outcomes measurement in clinical trials and clinical practice, and provides a new perspective in the clinical evaluation of spasticity.
Assuntos
Avaliação da Deficiência , Esclerose Múltipla/diagnóstico , Espasticidade Muscular , Atividades Cotidianas , Adulto , Idoso , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/psicologia , Psicometria , Perfil de Impacto da Doença , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The use of self-report measurements in clinical settings has increased. The underlying assumption for self-report measurements is that the patient understands the questions fully and is able to give a reliable assessment of his or her own health status. This might be problematic in patients with limitations that interfere with reliable self-assessment such as cognitive impairment or serious mood disturbances, as may be the case in multiple sclerosis. In these situations proxies may provide valuable information, provided we can be certain that proxies and patients give consistent ratings. OBJECTIVE: To examine whether patients with multiple sclerosis and their partners agree on the impact of multiple sclerosis on the daily life of the patient by using the Multiple Sclerosis Impact Scale (MSIS-29). METHODS: 59 patients with multiple sclerosis and their partners completed the MSIS-29. Agreement was examined, comprehensively at scale score levels and item functioning, using both traditional and less conventional psychometric methods (Rasch analysis). RESULTS: Agreement between patients and partners was good for the physical scale, and slightly less but still adequate for the psychological scale. Mean directional differences did not show considerable systematic bias between patients and proxies. Intraclass correlation coefficients (ICCs) satisfied the requirements for agreement, but were higher for the physical scale (0.81) than for the psychological scale (0.72). These findings were supported by Rasch analyses. CONCLUSION: In this sample, albeit small, partners provided accurate estimates of the impact of multiple sclerosis. This supports the value of self-rating scales and indicates that partners might be useful sources of information when assessing the impact of multiple sclerosis on the daily life of patients.
Assuntos
Esclerose Múltipla/complicações , Procurador , Adulto , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Variações Dependentes do Observador , Reprodutibilidade dos Testes , Autoavaliação (Psicologia) , Índice de Gravidade de DoençaRESUMO
BACKGROUND: The Multiple Sclerosis Walking Scale (MSWS-12) was developed to measure the impact of multiple sclerosis on walking. Many other disabling neurological conditions affect patients' ability to walk, and a generic measure of walking could provide valuable insights into patients' perceptions in clinical trials and epidemiological studies as well as routine clinical practice. OBJECTIVE: To evaluate the clinical usefulness and psychometric properties of the Walking Impact Scale (Walk-12), a modified version of the MSWS-12, in patients with neurological conditions. DESIGN: A prospective, observational study of 120 consecutive patients admitted for rehabilitation. The Walk-12 was used to measure the impact of neurological disability on walking. Traditional psychometric methods (data quality, scaling assumptions, targeting, reliability, validity and responsiveness) were used to assess the Walk-12. Transition questions were used on discharge to measure perception of change. Outcome was also measured using the timed walk test (TWT), Barthel Index (BI) and Functional Independence Measure (FIM). RESULTS: For the total group, missing data were few, scaling assumptions were satisfied, and internal consistency was 0.94. Correlations between the Walk-12 and TWT, BI and FIM motor score were moderate (r=-0.58, -0.26, -0.31). Responsiveness of the Walk-12 was high (effect size=1.12). Relationships between effect size and patients' and physiotherapists' opinion of change in walking demonstrated good concordance. Preliminary subgroup analyses indicate satisfactory psychometric properties across different neurological conditions; however, sample numbers in these analyses are small. CONCLUSIONS: In this sample of neurologically disabled patients the Walk-12 was clinically useful and satisfied standard psychometric criteria. This provides preliminary evidence that it may be suitable as a generic measure of walking ability.
Assuntos
Técnicas de Diagnóstico Neurológico/normas , Doenças do Sistema Nervoso/fisiopatologia , Psicometria/métodos , Caminhada , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Avaliação da Deficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Estudos Prospectivos , Reprodutibilidade dos Testes , Estudos Retrospectivos , Índice de Gravidade de DoençaRESUMO
OBJECTIVE: The 36-item Short Form Health Survey Questionnaire (SF-36) is a widely used generic health status measure. Recently it has been adapted to produce a disease-specific measure for MS-the 54-item Multiple Sclerosis Quality of Life Scale (MSQOL-54)-composed of five unchanged SF-36 scales; three altered SF-36 scales (one item added to each scale); and five new scales incorporating 15 additional items. This study evaluates the impact of these additions by comparing the measurement properties of the MSQOL-54 with the SF-36. METHODS: A total of 150 patients with MS, representing a broad spectrum of disease severity, completed a range of questionnaires, which included the MSQOL-54 (from which the SF-36 score was computed). Of these, 44 people completed the measures before and after inpatient rehabilitation to evaluate responsiveness. Standard psychometric methods were used to evaluate the measurement properties. RESULTS: The measurement properties of the unchanged scales, inevitably, remain identical. Those of the three altered scales are virtually identical. Of the five new scales, the validity of the two sexual scales is questioned because of the high percentage of missing data, and the validity of the overall quality-of-life scale is limited as demonstrated by the low to moderate correlations with other related and unrelated measures. Responsiveness of the new scales also appears limited. CONCLUSION: Modifying existing measures by simply adding clinically chosen items may not be as useful as anticipated in improving the measurement properties of an instrument.
Assuntos
Nível de Saúde , Inquéritos Epidemiológicos , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/reabilitação , Psicometria/métodosRESUMO
OBJECTIVE: To determine the duration and pattern of carry-over of benefits gained after a short period of multidisciplinary inpatient rehabilitation. BACKGROUND: Few studies have evaluated the outcome of rehabilitation after discharge. Long-term follow-up is required to establish whether gains made during the inpatient stay are sustained over time and in the patient's own environment. METHODS: Prospective single-group longitudinal study. Fifty consecutive patients with progressive MS undergoing inpatient rehabilitation were followed for 12 months after discharge. Assessments were undertaken on admission (A), at discharge, and subsequently at 3-month intervals for 1 year (1Y) with a battery of measures addressing neurologic status, disability, handicap, quality of life, and emotional well-being. The time taken to return to baseline level was calculated using summary measures, and trends in performance levels were plotted. RESULTS: Twelve-month data were collected for 92% of patients. Although neurologic status declined (median Expanded Disability Status Scale scores: A = 6.8, 1Y = 8.0), improvements were maintained in disability and handicap for 6 months, emotional well-being for 7 months, and health-related quality of life (physical component) for 10 months. CONCLUSIONS: The benefits gained from rehabilitation were partly maintained after discharge despite worsening neurologic status. Carry-over of benefits, however, declined over time, reinforcing the need for continuity of care between the inpatient setting and the community.
Assuntos
Continuidade da Assistência ao Paciente , Pacientes Internados/psicologia , Esclerose Múltipla/psicologia , Esclerose Múltipla/reabilitação , Alta do Paciente , Adulto , Idoso , Serviços de Saúde Comunitária , Avaliação da Deficiência , Emoções , Feminino , Seguimentos , Nível de Saúde , Humanos , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Resultado do TratamentoRESUMO
OBJECTIVE: To compare the 10-item Barthel Index (BI), 18-item Functional Independence Measure (FIM), and 30-item Functional Independence Measure + Functional Assessment Measure (FIM+FAM) as measures of disability outcomes for neurologic rehabilitation. METHODS: A total of 149 inpatients from two rehabilitation units in South England specializing in neurologic disorders were studied. Traditional psychometric methods were used to evaluate and compare acceptability (score distributions), reliability (internal consistency, intrarater reproducibility), validity (concurrent, convergent and discriminant construct), and responsiveness (standardized response mean). RESULTS: All three rating scales satisfied recommended criteria for reliable and valid measurement of disability, and are acceptable and responsive in this study sample. The FIM and FIM+FAM total scales are psychometrically similar measures of global disability. The BI, FIM, and FIM+FAM motor scales are psychometrically similar measures of physical disability. The FIM and FIM+FAM cognitive scales are psychometrically similar measures of physical disability. CONCLUSIONS: In the sample studied, the BI, FIM, FIM+FAM have similar measurement properties, when examined using traditional psychometric analyses. Although instruments with more items and item response categories generate more qualitative information about an outcome, they may not improve its measurement. Results highlight the importance of using recognized techniques of scale construction to develop health outcome measures.
Assuntos
Medicina Baseada em Evidências/métodos , Doenças do Sistema Nervoso/reabilitação , Avaliação de Resultados em Cuidados de Saúde/métodos , Adolescente , Adulto , Idoso , Avaliação da Deficiência , Análise Discriminante , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doenças do Sistema Nervoso/psicologia , Escalas de Graduação Psiquiátrica/estatística & dados numéricos , Psicometria , Reprodutibilidade dos TestesRESUMO
OBJECTIVES: To develop a patient-based, disease-specific measure of the health impact of multiple sclerosis (MS) for use in clinical trials and clinical practice. DATA SOURCES: People with MS. Members of the MS Society of Great Britain and Northern Ireland. METHODS: Standard psychometric methods were used to develop the Multiple Sclerosis Impact Scale (MSIS-29) in three stages. Stage 1 (item generation): questionnaire items were generated from 30 patient interviews on the impact of MS on their lives, expert opinion and literature review. Stage 2 (item reduction and scale generation): the questionnaire developed in stage 1 was administered by postal survey to 1530 randomly selected members of the MS Society. Standard item reduction techniques were used to develop a rating scale from the pool of questionnaire items. Stage 3 (psychometric evaluation): the questionnaire was evaluated for data quality, scaling assumptions, acceptability, reliability and validity in a separate postal survey of 1250 MS Society members. Responsiveness was evaluated in 55 people admitted to hospital for rehabilitation and intravenous steroid treatment of MS relapses. RESULTS: Stage 1 resulted in a 129-item questionnaire. Stage 2 resulted in a 29-item rating scale measuring the physical and psychological impact of MS. The MSIS-29 satisfied all recommended psychometric criteria for rigorous measurement. Data quality was excellent: missing data were low, item test-retest reliability was high and scale scores could be generated for over 98% of respondents. Item descriptive statistics, item convergent and discriminant validity, and factor analysis supported summing items to produce two summary scores. MSIS-29 physical and psychological scale scores showed good variability, low floor and ceiling effects, good internal consistency and test-retest reliability. Correlations with other measures and confirmation of hypotheses about group differences provided evidence for the validity of the MSIS-29 as a measure of the physical and psychological impact of multiple sclerosis. Effect sizes provided preliminary evidence for responsiveness. CONCLUSIONS: The 29-item MSIS-29 is a rigorous new measure of the physical and psychological impact of MS. All psychometric criteria were satisfied and there is preliminary evidence of responsiveness. The MSIS-29 is particularly appropriate for use in clinical trials to evaluate therapeutic effectiveness from the patient's perspective. Further critical evaluations of the MSIS-29 completed by people with neurologist-confirmed MS in different settings are suggested. Head-to-head comparisons of the psychometric properties of the MSIS-29 and other outcome measures for MS will help to determine the relative advantages of different instruments so that the choice of measures for studies can be evidence based.
Assuntos
Esclerose Múltipla/terapia , Resultado do Tratamento , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/estatística & dados numéricos , Distribuição Aleatória , Inquéritos e Questionários , Reino UnidoRESUMO
Attempting to measure the impact of multiple sclerosis (MS) on the individuals patients has become a major issue stimulated by both the emergence of new therapeutic agents and the increasing demand to incorporate the patient's perspective. Disability has been the main focus. Recently, new disability scales have been developed and generic scales evaluated in an attempt to replace or complement the constantly used and much criticized Expanded Disability Status Scale (EDSS). There is, however, the growing realization that it is important to incorporate broader aspects of disease input such as are contained within the concepts of health-related quality of life. Current scales in this area are limited in either their scientific soundness and/or clinical usefulness, and it may be appropriate to consider the development of a new MS-specific measure of disease impact for use in clinical trials.
Assuntos
Pessoas com Deficiência/classificação , Esclerose Múltipla/classificação , Avaliação de Resultados em Cuidados de Saúde , Avaliação da Deficiência , Humanos , Psicometria , Índice de Gravidade de DoençaRESUMO
There is a need for the evaluation of neurorehabilitation to reflect the integrated multidisciplinary input which is fundamental to the intervention process. The importance of multidisciplinary involvement in achieving this is discussed with particular reference to multiple sclerosis, which exemplifies the many problems inherent in chronic neurological disease that must be addressed in the evaluation of the rehabilitation programme. Some of the current difficulties of research in this specialty are raised, and suggestions made for the future.
Assuntos
Encefalopatias/reabilitação , Relações Interprofissionais , Avaliação de Resultados em Cuidados de Saúde/normas , Coleta de Dados/métodos , Estudos de Avaliação como Assunto , Humanos , Esclerose Múltipla/reabilitação , Projetos de PesquisaRESUMO
The Barthel Index (BI) may underestimate disability change because its items have few response options. We examined whether a similar scale with more response options (Functional Independence Measure, FIM) was more responsive (n = 1,396). The FIM had greater potential for responsiveness and identified more people who changed. However, its actual responsiveness, measured by effect sizes, equaled that of the BI. This counterintuitive finding suggests that effect sizes may be limited indicators of responsiveness.
Assuntos
Atividades Cotidianas , Avaliação da Deficiência , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/reabilitação , Estudos Retrospectivos , Doenças da Medula Espinal/epidemiologia , Doenças da Medula Espinal/reabilitação , Acidente Vascular Cerebral/epidemiologia , Reabilitação do Acidente Vascular CerebralRESUMO
We compared the responsiveness of the Cervical Dystonia Impact Profile (CDIP-58), Medical Outcome Study Short Form-Health Survey (SF-36), Functional Disability Questionnaire (FDQ), and Pain and Activities of Daily Living subscales of the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) in participants with cervical dystonia treated with botulinum toxin A. Subscales of CDIP-58 were more sensitive in detecting statistical and clinical change than comparable subscales of the SF-36, FDQ, and TWSTRS.
Assuntos
Toxinas Botulínicas Tipo A/uso terapêutico , Cervicalgia/epidemiologia , Cervicalgia/prevenção & controle , Avaliação de Resultados em Cuidados de Saúde/métodos , Perfil de Impacto da Doença , Torcicolo/tratamento farmacológico , Torcicolo/epidemiologia , Adulto , Idoso , Inglaterra/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cervicalgia/diagnóstico , Prevalência , Prognóstico , Psicometria/métodos , Qualidade de Vida , Reprodutibilidade dos Testes , Medição de Risco/métodos , Fatores de Risco , Sensibilidade e Especificidade , Torcicolo/diagnóstico , Resultado do TratamentoRESUMO
OBJECTIVES: To compare the responsiveness of the Multiple Sclerosis Impact Scale (MSIS-29) with other self report scales in three multiple sclerosis (MS) samples using a range of methods. To estimate the impact on clinical trials of differing scale responsiveness. METHODS: We studied three discrete MS samples: consecutive admissions for rehabilitation; consecutive admissions for steroid treatment of relapses; and a cohort with primary progressive MS (PPMS). All patients completed four scales at two time points: MSIS-29; Short Form 36 (SF-36); Functional Assessment of MS (FAMS); and General Health Questionnaire (GHQ-12). We determined: (1) the responsiveness of each scale in each sample (effect sizes): (2) the relative responsiveness of competing scales within each sample (relative efficiency): (3) the differential responsiveness of competing scales across the three samples (relative precision); and (4) the implications for clinical trials (samples size estimates scales to produce the same effect size). RESULTS: We studied 245 people (64 rehabilitation; 77 steroids; 104 PPMS). The most responsive physical and psychological scales in both rehabilitation and steroids samples were the MSIS-29 physical scale and the GHQ-12. However, the relative ability of different scales to detect change in the two samples was variable. Differing responsiveness implied more than a twofold impact on sample size estimates. CONCLUSIONS: The MSIS-29 was the most responsive physical and second most responsive psychological scale. Scale responsiveness differs notably within and across samples, which affects sample size calculations. Results of clinical trials are scale dependent.
Assuntos
Esclerose Múltipla/diagnóstico , Esclerose Múltipla/fisiopatologia , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos TestesRESUMO
Data from a clinical study presented an opportunity to examine the psychometric properties of the Leeds Multiple Sclerosis Quality of Life scale (LMSQoL), which has undergone limited psychometric evaluation. LMSQoL and Multiple Sclerosis Quality of Life-54 (MSQoL-54) data were collected from 90 people with multiple sclerosis (MS) living in the community. Standard psychometric methods to examine data quality, scaling assumptions, scale to sample targeting, reliability, validity, and responsiveness were employed. The LMSQoL satisfied criteria for data quality (no missing data), scaling assumptions (item-total correlations: 0.24-0.56), reliability (Cronbach's alpha: 0.71), and demonstrated responsiveness (effect size: 0.34). Correlations between the LMSQoL and MSQoL-54 physical (range: -0.02 to -0.50) and emotional subscales (range: -0.38 to -0.65) were similar; the magnitude and pattern was not consistent with predictions based on the construct purported to be measured by the LMSQoL. The LMSQoL satisfied many psychometric criteria in this small study, however, it was difficult to interpret the validity data. From this, two fundamental measurement issues are highlighted. Firstly, current methods of examining rating scales provide only circumstantial evidence of validity; secondly, health-rating scales should be developed on the basis of clear conceptual definitions.
Assuntos
Esclerose Múltipla Crônica Progressiva/psicologia , Esclerose Múltipla Recidivante-Remitente/psicologia , Psicometria/normas , Qualidade de Vida , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários/normasRESUMO
BACKGROUND: Clinical databases are being used increasingly to assess outcomes in healthcare services to provide evidence of clinical effectiveness in routine clinical practice. OBJECTIVES: To explore the benefits of a database for routine collection of clinical outcomes within an inpatient neurorehabilitation setting; determine the effectiveness of inpatient neurorehabilitation in a range of neurological conditions; and determine variables influencing change in functional outcome. METHODS: Over a nine year period, demographic and diagnostic characteristics were collected for the 1458 patients admitted consecutively to a neurorehabilitation unit. The level of function was measured on admission and discharge using the Barthel Index (BI) and Functional Independence Measure (FIM). Patient perception of rehabilitation benefit was evaluated using visual analogue scales (VAS). RESULTS: Of the 1413 patients (mean (SD) age 48 (14.8), range 16 to 87) whose length of stay was more than 10 days (mean 34 (24) range 10 to 184), 282 had stroke, 614 multiple sclerosis, 248 spinal cord injuries, 93 a neuromuscular condition, and 176 other brain pathology. Patients improved in functional ability as measured by both BI and the FIM motor subscale (effect sizes 0.93 to 1.44 and 1.01 to 1.48, respectively). VAS ratings demonstrated high levels of patient perceived benefit. Diagnosis, functional activity score on admission, and length of stay were significant predictors of functional gain, explaining 44% of the variability in the change scores. CONCLUSIONS: Systematic collection, analysis, and interpretation of standardised clinical outcomes data are feasible within routine clinical practice, and provide evidence that inpatient rehabilitation is effective in improving functional level in neurologically impaired patients. These data complement those of clinical trials and are useful in informing and developing clinical and research practice.
Assuntos
Encéfalo/fisiopatologia , Doenças do Sistema Nervoso Central/fisiopatologia , Doenças do Sistema Nervoso Central/reabilitação , Coleta de Dados , Periodicidade , Atividades Cotidianas , Cognição , Comunicação , Demografia , Hospitalização , Humanos , Psicometria , Indicadores de Qualidade em Assistência à Saúde , Recuperação de Função Fisiológica , Resultado do TratamentoRESUMO
OBJECTIVES: Routine data collection is now considered mandatory. Therefore, staff rated clinical scales that consist of multiple items should have the minimum number of items necessary for rigorous measurement. This study explores the possibility of developing a short form Barthel index, suitable for use in clinical trials, epidemiological studies, and audit, that satisfies criteria for rigorous measurement and is psychometrically equivalent to the 10 item instrument. METHODS: Data were analysed from 844 consecutive admissions to a neurological rehabilitation unit in London. Random half samples were generated. Short forms were developed in one sample (n=419), by selecting items with the best measurement properties, and tested in the other (n=418). For each of the 10 items of the BI, item total correlations and effect sizes were computed and rank ordered. The best items were defined as those with the lowest cross product of these rank orderings. The acceptability, reliability, validity, and responsiveness of three short form BIs (five, four, and three item) were determined and compared with the 10 item BI. Agreement between scores generated by short forms and 10 item BI was determined using intraclass correlation coefficients and the method of Bland and Altman. RESULTS: The five best items in this sample were transfers, bathing, toilet use, stairs, and mobility. Of the three short forms examined, the five item BI had the best measurement properties and was psychometrically equivalent to the 10 item BI. Agreement between scores generated by the two measures for individual patients was excellent (ICC=0.90) but not identical (limits of agreement=1.84+/-3.84). CONCLUSIONS: The five item short form BI may be a suitable outcome measure for group comparison studies in comparable samples. Further evaluations are needed. Results demonstrate a fundamental difference between assessment and measurement and the importance of incorporating psychometric methods in the development and evaluation of health measures.
Assuntos
Avaliação de Resultados em Cuidados de Saúde/métodos , Coleta de Dados , Humanos , Psicometria , Reprodutibilidade dos TestesRESUMO
Self-efficacy is a belief that one can competently cope with a challenging situation. If self-efficacy is a strong predictor of health status in multiple sclerosis (MS), it may be an important area to target in clinical practice, as such beliefs may be modifiable. The aim of this study was to examine the predictive value of self-efficacy on self-reported health status in MS. Eighty-nine people with MS completed the Multiple Sclerosis Self-efficacy Scale (MSSE function and control scales), the Multiple Sclerosis Impact Scale (MSIS-29), and the Multiple Sclerosis Walking Scale (MSWS-12) at two time points: 1) admission to an inpatient rehabilitation unit (n = 43) or for steroid treatment for relapses (n = 46); and 2) discharge (rehabilitation group) or six weeks later (steroid group). Multiple regression analyses examined whether baseline and changes in self-efficacy predict changes in self-reported health status. Both baseline and changes in self-efficacy were strong and independent predictors of changes in health status (P-values ranged from 0.025 to < 0.001). That is, pretreatment self-efficacy scores and increases in self-efficacy scores from baseline to follow-up (improvement), were significantly associated with decreases (improvement) in perceived walking ability and physical and psychological impact of MS. The findings suggest that self-efficacy predicts improvement in health status and that self-efficacy would be an important domain to measure and manage actively in education and rehabilitation programs.
Assuntos
Nível de Saúde , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/psicologia , Autoeficácia , Perfil de Impacto da Doença , Adulto , Estudos de Coortes , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/tratamento farmacológico , Esclerose Múltipla/reabilitação , Valor Preditivo dos Testes , Autoavaliação (Psicologia) , Esteroides/uso terapêutico , Resultado do Tratamento , CaminhadaRESUMO
Outcomes can be described as either physician or patient-oriented depending on whose perspective is adopted. Both perspectives offer different yet complementary information. Traditionally, the effectiveness of interventions has been evaluated in terms of physician-oriented outcomes. recently there has been a growing recognition of the importance of the patient's point of view in assessing the outcomes of medical care. This is now held to be central to the monitoring and evaluation of health care. This review describes these two perspectives and compares the nature of the information provided by each.
Assuntos
Doenças do Sistema Nervoso Central/reabilitação , Avaliação da Deficiência , Exame Neurológico , Qualidade de Vida , Atividades Cotidianas/classificação , Doenças do Sistema Nervoso Central/diagnóstico , Humanos , Resultado do TratamentoRESUMO
BACKGROUND: The importance of evaluating disability outcome measures is well recognised. The Functional Independence Measure (FIM) was developed to be a more comprehensive and "sensitive" measure of disability than the Barthel Index (BI). Although the FIM is widely used and has been shown to be reliable and valid, there is limited information about its responsiveness, particularly in comparison with the BI. This study compares the appropriateness and responsiveness of these two disability measures in patients with multiple sclerosis and stroke. METHODS: Patients with multiple sclerosis (n=201) and poststroke (n=82) patients undergoing inpatient neurorehabilitation were studied. Admission and discharge scores were generated for the BI and the three scales of the FIM (total, motor, and cognitive). Appropriateness of the measures to the study samples was determined by examining score distributions, floor and ceiling effects. Responsiveness was determined using an effect size calculation. RESULTS: The BI, FIM total, and FIM motor scales show good variability and have small floor and ceiling effects in the study samples. The FIM cognitive scale showed a notable ceiling effect in patients with multiple sclerosis. Comparable effect sizes were found for the BI, and two FIM scales (total and motor) in both patients with multiple sclerosis and stroke patients. CONCLUSION: All measures were appropriate to the study sample. The FIM cognitive scale, however, has limited usefulness as an outcome measure in progressive multiple sclerosis. The BI, FIM total, and FIM motor scales show similar responsiveness, suggesting that both the FIM total and FIM motor scales have no advantage over the BI in evaluating change.