Fary Khan

Effectiveness of rehabilitation intervention in persons with multiple sclerosis: a randomised controlled trial

Objective: A stratified, randomised, waitlist controlled study over 12 months assessed the effectiveness of rehabilitation in persons with multiple sclerosis (MS) in an Australian community cohort. Methods: Patients with definite MS (n = 101) recruited from a tertiary hospital database, randomised to a treatment group (n = 49) for individualised rehabilitation programme or a control waitlist group (n = 52). Functional Independence Measure (FIM) was used to assess “activity” while the Multiple Sclerosis Impact Scale (MSIS-29) and General Health Questionnaire (GHQ-28) assessed “participation” and quality of life (QoL). Assessments were at baseline and 12 months. Results: Analysis of data from 98 patients (treatment n = 48, control n = 50) showed reduced disability in the treatment group, with statistically significant differences in post-treatment FIM motor scores for the two groups (p<0.001). There was a clinical and statistically significant improvement in FIM (motor) total scores (p<0.001), and the FIM motor domains of: transfer (p<0.001), locomotion (p<0.001), self-care (p<0.001) and the FIM cognitive subscale (p<0.016). In the treated group, 70.8% improved compared with 13% of controls. Significantly more patients in the control group deteriorated over the study period (58.7% vs 16.7%; p<0.001). There were no differences between the control and treatment group scores on the MSIS-physical (p = 0.18), MSIS-psychological (p = 0.45) or GHQ subscales. Conclusion: An individualised rehabilitation programme reduces disability in persons with MS compared with no intervention. The impact of rehabilitation on QoL needs further evaluation. More information on the effectiveness of the various components of the multidisciplinary rehabilitation programmes are now needed. Australian clinical trials registry: Trials registration number: ACTRNO12605000676617.

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS). Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress. Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores. Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

Rehabilitation interventions in multiple sclerosis: an overview

Multiple sclerosis is a complex, heterogeneous disease associated with long-term disability. Despite the availability of advanced disease-modifying and symptomatic therapies that may decrease activity and progression of disease and alleviate complaints to a certain extent, there is still a need for comprehensive rehabilitation interventions in order to reduce sequels and symptoms of the disease on personal activities and social participation to achieve the highest possible independence and the best quality of life. Timing and setting of rehabilitation interventions should be selected individually depending on disease phase, functional deficits, personal requirements, as well as specific goals. In addition, limitations and disease-specific characteristics that may influence rehabilitation outcome should be noted. Rehabilitation interventions should be considered early for maintaining functional capacity and reducing risk for losing important abilities or independence. Due to gradual failure of adaptive compensatory mechanisms along the course of disease, benefits of rehabilitation interventions are generally higher in earlier phases of MS. Inpatient and outpatient multidisciplinary rehabilitation has been shown to be beneficial in improving disability, participation and quality of life despite progression of the disease. Good evidence exists for different specific interventions improving physical and cognitive performance. Other important issues responsible for beneficial effects of comprehensive rehabilitation in MS include education, instruction, and information of patients and caregivers. Comprehensive assessment of health domains in MS patients using standardized framework and common language for describing the impact of disease at different levels, using International Classification of Functioning, Disability and Health (ICF) core sets may increase the knowledge of needs of these patients for more efficient and adapted rehabilitation interventions meeting these individual requirements, and promote perception and acceptance of rehabilitation as a valuable treatment option in MS. ICF core sets may increase the knowledge of more efficient and adapted rehabilitation measures meeting more properly individual requirements, and promote perception and acceptance of rehabilitation as a valuable treatment option in MS.

Rasch analysis of the Multiple Sclerosis Impact Scale MSIS-29.

BackgroundMultiple Sclerosis (MS) is a degenerative neurological disease that causes impairments, including spasticity, pain, fatigue, and bladder dysfunction, which negatively impact on quality of life. The Multiple Sclerosis Impact Scale (MSIS-29) is a disease-specific health-related quality of life (HRQoL) instrument, developed using the patients perspective on disease impact. It consists of two subscales assessing the physical (MSIS-29-PHYS) and psychological (MSIS-29-PSYCH) impact of MS. Although previous studies have found support for the psychometric properties of the MSIS-29 using traditional methods of scale evaluation, the scale has not been subjected to a detailed Rasch analysis. Therefore, the objective of this study was to use Rasch analysis to assess the internal validity of the scale, and its response format, item fit, targeting, internal consistency and dimensionality.MethodsNinety-two persons with definite MS residing in the community were recruited from a tertiary hospital database. Patients completed the MSIS-29 as part of a larger study. Rasch analysis was undertaken to assess the psychometric properties of the MSIS-29.ResultsRasch analysis showed overall support for the psychometric properties of the two MSIS-29 subscales, however it was necessary to reduce the response format of the MSIS-29-PHYS to a 3-point response scale. Both subscales were unidimensional, had good internal consistency, and were free from item bias for sex and age. Dimensionality testing indicated it was not appropriate to combine the two subscales to form a total MSIS score.ConclusionIn this first study to use Rasch analysis to fully assess the psychometric properties of the MSIS-29 support was found for the two subscales but not for the use of the total scale. Further use of Rasch analysis on the MSIS-29 in larger and broader samples is recommended to confirm these findings.

The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference.

To systematically and comprehensively describe functioning and disability in Multiple sclerosis (MS), practical tools based on the International Classification of Functioning, Disability and Health (ICF), such as ICF Core Sets, are needed. Objective: to report on the results of an evidence-based International Consensus Conference to develop the Comprehensive and Brief ICF Core Set for MS. A formal and iterative decision-making and consensus process was undertaken, involving the integration of evidence from preparatory studies (expert survey, systematic literature review, qualitative study, empirical cross-sectional study) and expert opinion. The decision-making and consensus process included discussions and voting in working groups and plenary sessions involving selected international experts from different health professions. Twenty-one experts from 16 countries selected 138 ICF categories for the Comprehensive ICF Core for MS (40 Body functions, 7 Body structures, 53 Activities and Participation categories and 38 Environmental factors) and 19 categories for the Brief ICF Core Set for MS (8 Body functions, 2 Body structures, 5 Activities and Participation categories, 4 Environmental factors). An evidence-based and formal decision-making consensus process led to the approval of ICF Core Sets for MS which should be further validated.

Do patient reported outcome measures in hip and knee arthroplasty rehabilitation have robust measurement attributes? A systematic review.

OBJECTIVE The aim of this study was to systematically review and compare the measurement attributes of multidimensional, patient-reported outcome measures used in hip and knee arthroplasty rehabilitation. METHODS A search of PubMed, CINAHL, Cochrane Central Registry, SCOPUS and PEDro databases up to December 2009 identified the validation studies. The quality of the measurement properties were assessed based on the Terwee and Bot criteria, and Scientific Advisory Committee of the Medical Outcomes Trust guidelines. RESULTS A total of 68 studies examining 28 instruments were identified. Three instruments had positive ratings for content validity. None of the instruments satisfied both factor analysis and Cronbachs α criteria for internal consistency. Four measures were positively-rated for agreement. Nine tools had positive ratings for construct validity. Twenty-four of the instruments had indeterminate ratings for responsiveness to clinical change. Only certain subscales of 2 instruments were positively-rated for responsiveness to clinical change. CONCLUSION A wide variety of multidimensional patient-reported instruments has been used to assess rehabilitation outcomes after hip and knee arthroplasty, but information about their measurement attributes in these populations is inadequate. More data are needed to clarify their reproducibility and responsiveness to clinical change. :

Use of Goal Attainment Scaling in Inpatient Rehabilitation for Persons With Multiple Sclerosis

OBJECTIVES To use goal attainment scaling (GAS) to measure clinically important functional change in persons with multiple sclerosis (MS) and to assess its responsiveness compared with standard measures used to evaluate progress in rehabilitation. DESIGN Prospective, observational cohort study. SETTING Tertiary inpatient rehabilitation unit in Victoria, Australia. PARTICIPANTS Consecutive sample of 24 persons with MS admitted for comprehensive rehabilitation program. The male-to-female ratio was 10:14, and the mean age +/- standard deviation was 52.0+/-8.3 years (range, 37-62y). Over half (n=14 [58.3%]) had secondary progressive MS. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES GAS scores were calculated for 5 to 10 priority goals set prospectively by each patient in agreement with the multidisciplinary treating team and compared with standard outcome measures-the FIM instrument and Barthel Index-rated on admission and discharge from the program. Patients were categorized into responders and nonresponders based on an overall clinical global impression. RESULTS Of 203 selected goals, 167 were achieved at the predicted level. GAS recorded outcomes for 105 individualized goals not measured by the FIM and Barthel Index. Although all 3 measures showed statistically significant change from admission to discharge (P<.001), only GAS scores strongly correlated with the Clinical Global Impression scale (rho=-.86, P<.001). GAS discharge scores differed significantly between the responder and nonresponder groups (Mann-Whitney, z=-3.78, P<.001). Different measures of effect size gave different results, but GAS was consistently more responsive than either the FIM or Barthel Index. CONCLUSIONS This preliminary study suggests that GAS is a responsive and useful outcome measure for the rehabilitation of persons with MS, providing added value to standardized outcome measurement.

Multidisciplinary rehabilitation for adults with multiple sclerosis

To assess the effectiveness of organised MDR in adults with MS. MDR was defined as an inpatient, outpatient, home or community based programme, delivered by two or more disciplines in conjunction with physician consultation, and targeted towards improvements at the level of activity and/or participation. METHODS The Cochrane MS Group methods search strategy identified all randomised (RCT) and controlled (CCT) clinical trials that compared MDR with routinely available local services or lower levels of intervention, or trials comparing interventions in different settings or at different levels of intensity. Three reviewers selected trials and rated their methodological quality independently. Methodological quality criteria (n = 17) proposed by van Tulder and colleagues 12 were used to assess internal validity, and descriptive and statistical criteria (details are available in the full review). Quantitative analysis was not possible because of the use of diverse outcomes and other clinical heterogeneity. Therefore, qualitative synthesis of ‘‘best evidence’’ was presented based on levels of evidence proposed by van Tulder and colleagues. 2

Management of Fatigue in Persons with Multiple Sclerosis

Fatigue is one of the most common symptoms of multiple sclerosis. Despite advances in pharmacological and non-pharmacological treatment, fatigue continues to be the disabling symptom in persons with MS (pwMS), affecting almost 80% of pwMS. In current practice, both pharmacological and non-pharmacological interventions are used in combination, encompassing a multi-disciplinary approach. The body of research investigating the effect of these interventions is growing. This review systematically evaluated the existing evidence on the effectiveness and safety of different interventions currently applied for the management of fatigue in person with multiple sclerosis in improving patient outcomes, to guide treating clinicians.

Multiple sclerosis: prevalence and factors impacting bladder and bowel function in an Australian community cohort

Purpose. To describe the prevalence and impact of bladder and bowel dysfunction on quality of life (QoL) in persons with multiple sclerosis (pwMS) in an Australian community cohort and to explore the relationships between commonly used continence measures. Methods. Patients (N = 73) recruited from a tertiary hospital database, interviewed using standardised measures, based on the framework of International Classification of Functioning, Disability and Health. Results. Of 73 participants (mean age 50 yrs, 73% female, 56% progressive MS), two thirds were bothered by urinary frequency whereas half reported urinary incontinence, and 14% bowel incontinence. Urinary problems impacted emotional health (31%), ability to perform household chores (22%) and physical recreation (28%), with detrimental impact on QoL. There was a significant relationship between symptoms, level of urogenital distress (rho = 0.74, p < 0.001) and impact of incontinence (rho = 0.68, p < 0.001). The single item of Urological Association Symptom Index assessing impact of bladder symptoms on QoL correlated significantly with all other bladder scales (rho = 0.60–0.74), making it a potential ‘screening tool’ to identify patients for further assessment. Conclusion. Continence issues cause significant disability in pwMS. Improved awareness of currently available treatment options and clinically robust trials are needed to assess outcomes of continence intervention.