Guy's Neurological Disability Scale Research Articles

Proxy measurements in multiple sclerosis: agreement on different patient-reported outcome scales

Background: Patient-reported outcome (PRO) scales are often used in multiple sclerosis (MS) research. Full understanding of items can be influenced by disease worsening, mood disturbances and cognitive problems of the MS patient. Earlier research with the Multiple Sclerosis Impact Scale (MSIS-29) showed that proxy respondents (i.e. partners of patients) can provide useful information. Objective: To determine agreement between patients and proxy respondents on different MS PRO scales. Methods: 139 Patients and partners completed the MSIS-29 (Physical and Psychological scale), Multiple Sclerosis Walking Scale (MSWS-12), Multiple Sclerosis Neuropsychological Screening Questionnaire (MSNQ) and Guy’s Neurological Disability Scale (GNDS). We calculated the mean difference and intra-class correlation coefficients (ICC) on scale level and weighted kappas (κw) on item level. Results: On all scales, except MSNQ, the partner score was higher. ICCs were good for MSWS, GNDS and MSIS Physical, and moderate for MSNQ and MSIS Psychological. κw was excellent for MSWS items, fair to good for GNDS, MSIS Physical and MSIS Psychological items, and poor for MSNQ items. Conclusion: Partners of patients with MS can be a useful source of information for several PRO scales, especially when the focus is on physical functioning. For psychological functioning this seems to be less reliable.

Clinical scales in progressive MS: predicting long-term disability

Background: To determine which short-term changes on clinical scales including the Expanded Disability Status Scale (EDSS), Timed 25-Foot Walk (T25FW), 9-Hole Peg test (9HPT) and Guy’s Neurological Disability Scale (GNDS) are most predictive of long-term outcome of disability as rated by the EDSS in progressive multiple sclerosis (MS). Methods: From a longitudinal database, all progressive patients, both primary (PP) and secondary (SP), were selected on the basis of at least two complete examinations being available within a time interval of 1–2 years (short-term change). All patients who fulfilled the selection criteria were invited for a third visit after an interval of at least 3 years (long-term outcome). We used ordinal logistic regression to see which early changes were most predictive of the long-term EDSS. Results: 181 patients fulfilled the selection criteria. Early change on EDSS and T25FW were the best predictors of long-term EDSS; both were significant predictors in a ‘single predictor’ model. Early EDSS change was a slightly stronger single predictor (R2 0.38, Wald χ2 42.65, p < 0.001) compared with early T25FW change (R2 0.27, Wald χ2 12.35, p < 0.001). Adding early T25FW change to early EDSS change in a ‘combined predictor’ model improved prediction (p = 0.036). Conclusion: Both early change on EDSS and T25FW predict long-term EDSS with comparable strength. Early change on T25FW adds significant independent information and improves the prediction model with early EDSS change only. Therefore we support the use of early T25FW examinations in future clinical trials in progressive MS.

Factor structure of Guy’s Neurological Disability Scale in a sample of Dutch patients with multiple sclerosis

Background: Guy’s Neurological Disability Scale (GNDS) is designed to assess disability (i.e. activity limitations) in patients with multiple sclerosis. It contains 12 functional domains, each indicating a level of disability. Four domain scores and a total score can be calculated. Objective: The aim of this study was to evaluate the structural validity of the GNDS in a Dutch population who were definitely diagnosed as having multiple sclerosis. Methods: Data of 974 patients were available. The structural validity of the GNDS was evaluated by confirmatory item factor analysis (CIFA). Two first-order models and two bifactor models were investigated. Results: The best fitted model was a bifactor model with a general factor underlying all items, and 10 items loading on 3 group factors. Cronbach’s alpha on the general factor (0.78) and on the group factor spinal-plus (0.74) were satisfying. Cronbach’s alpha on the group factors mental (0.56) and bulbar (0.48) were low. Reliability based on CIFA was 0.85. Conclusion: Results showed a clear factor structure of the GNDS. It justifies the use of the total score of the GNDS. In addition, three sub-scale scores could be used.

Pregnancy in multiple sclerosis: clinical and self-report scales

Relapse rate is decreased during pregnancy in multiple sclerosis (MS). Risk for postpartum relapse is increased in the first 3 months after delivery. We aimed to study clinical course of MS around pregnancy, using clinical as well as self-report scales, including data on quality of life (QoL), and to identify clinical factors predisposing for postpartum relapse. We performed a prospective, longitudinal study among 35 MS patients and 20 controls. In patients we assessed expanded disability status scale (EDSS), the Guy’s neurological disability scale (GNDS) and the multiple sclerosis impact scale 29 (MSIS-29). In patients and controls we assessed the MOS 36 item short form health survey questionnaire (SF36), consisting of eight domains. The previously described surge in relapses after delivery was also obvious in this study (p = 0.005). At group level EDSS and MSIS-29 did not show overt fluctuations over time. The GNDS, however, improved during the third trimester, compared to the first trimester (p = 0.003). A concomitant improvement in the SF36 domains vitality (p < 0.001) and general health (p = 0.001) was found in patients. At the final visit, at least 9 months after delivery, no worsening of EDSS, GNDS, MSIS-29 or SF36 was observed compared with the (for MS, beneficial) third trimester. Duration of disease, relapses in the year preceding pregnancy or relapses during pregnancy were not associated with postpartum relapse. QoL is improved during pregnancy. Although relapse rate was increased directly after delivery, in the mid long term after delivery no adverse effects of pregnancy on MS were found.

A Profiling Study of People with Multiple Sclerosis Who Access Physiotherapy Services in Ireland

In a survey of its members conducted by the MS Society of Ireland, access to physiotherapy was reported as the greatest unmet need. This national multicenter profiling study surveyed people with multiple sclerosis (MS) receiving physiotherapy services at a range of locations to determine their characteristics and the amount of intervention received. A standardized data-collection sheet was developed, and data were collected over a 3-month period. The lower-extremity section of the Guys Neurological Disability Scale was used to classify mobility level, which varied widely. A total of 295 people received physiotherapy at 17 services during the 3-month period. Of these, 72% were female, and most had relapsing-remitting (43%) or secondary progressive MS (39%). Those using walking aids made up the largest proportion of participants (47.5%). On average, participants received 3.6 hours of physiotherapy over the 3-month period, with 36% of participants receiving 1 hour or less and 9.5% of participants receiving more than 8 hours. The main problems cited were balance, fatigue, walking, mobility, and strength. Further research is required to determine whether the small amount of physiotherapy being received by MS patients in Ireland is sufficient to bring about improvement or prevent further deterioration in functional status.

Getting the Balance Right: A randomised controlled trial of physiotherapy and Exercise Interventions for ambulatory people with multiple sclerosis

Background People with Multiple Sclerosis have a life long need for physiotherapy and exercise interventions due to the progressive nature of the disease and their greater risk of the complications of inactivity. The Multiple Sclerosis Society of Ireland run physiotherapy, yoga and exercise classes for their members, however there is little evidence to suggest which form of physical activity optimises outcome for people with the many and varied impairments associated with MS.Methods and design This is a multi-centre, single blind, block randomised, controlled trial. Participants will be recruited via the ten regional offices of MS Ireland. Telephone screening will establish eligibility and stratification according to the mobility section of the Guys Neurological Disability Scale. Once a block of people of the same strand in the same geographical region have given consent, participants will be randomised. Strand A will concern individuals with MS who walk independently or use one stick to walk outside. Participants will be randomised to yoga, physiotherapy led exercise class, fitness instructor led exercise class or to a control group who don't change their exercise habits.Strand B will concern individuals with MS who walk with bilateral support or a rollator, they may use a wheelchair for longer distance outdoors. Participants will be randomised to 1:1 Physiotherapist led intervention, group intervention led by Physiotherapist, group yoga intervention or a control group who don't change their exercise habits. Participants will be assessed by physiotherapist who is blind to the group allocation at week 1, week 12 (following 10 weeks intervention or control), and at 12 week follow up. The primary outcome measure for both strands is the Multiple Sclerosis Impact Scale. Secondary outcomes are Modified Fatigue Impact Scale, 6 Minute Walk test, and muscle strength measured with hand held dynamometry. Strand B will also use Berg Balance Test and the Modified Ashworth Scale. Confounding variables such as sensation, coordination, proprioception, range of motion and other impairments will be recorded at initial assessment.Discussion Data analysis will analyse change in each group, and the differences between groups. Sub group analysis may be performed if sufficient numbers are recruited.Trial registrationISRCTN77610415

Limited upper limb functioning has impact on restrictions in participation and autonomy of patients with hereditary motor and sensory neuropathy 1a

To evaluate upper limb functioning, restrictions on participation and the independent contribution of upper and lower limb disability to participation in hereditary motor and sensory neuropathy 1a. Descriptive cross-sectional study. Forty-nine patients with hereditary motor and sensory neuropathy 1a. Perceived upper limb functioning was evaluated using the Michigan Hand Outcomes Questionnaire and participation restrictions with the Impact on Participation and Autonomy Questionnaire. Upper and lower limb domains of Guy's Neurological Disability Scale were used to determine their impact on participation restrictions. Limitations in upper limb functioning were perceived by 98% of the patients. Median scores ranged between 70 points for overall hand function and 100 points for aesthetics (scale 0-100). Patients were least satisfied with dominant hand performance. Most patients (46-78%) reported their participation to be sufficient. Restrictions were reported in the domains work, family roles, and autonomy outdoors. Minor problems with restricted participation were indicated by 22-55%, severe problems by 2-12%. Upper limb functioning correlated significantly with all participation subscales. Upper limb disability was independently associated with participation restrictions, whereas lower limb disability was not. Limitations in upper limb functioning were perceived by the majority of patients with hereditary motor and sensory neuropathy 1a and strongly related to restricted participation.

Correlates of Sexual Dysfunction in Men and Women with Multiple Sclerosis

Sexual dysfunction (SD) is an often overlooked disability in multiple sclerosis (MS). The purpose of this study was to investigate the relationship between SD and other disabilities in men and women with MS. The sample included 32 men and 219 women. The men ranged in age from 32 to 65 years with a mean of 47.6 years. The women ranged in age from 22 to 77 years with a mean of 45.4 years. Data were collected using Guy's Neurological Disability Scale and a demographic questionnaire. In men, a significant positive relationship was found between SD and lower-limb and bladder disability. No relationship was found between SD and other MS disabilities. The most common problems for men involved erection and ejaculation. For women, a significant positive relationship was found between SD and all other MS disabilities. The strongest correlation was between SD and fatigue. The most common problems for women involved vaginal lubrication and orgasm. No relationship was found between SD and number of years with MS or age in either men or women. An open dialogue about SD may improve quality of life for people with MS. Interventions may include symptomatic treatment, referral of the couple for sexual counseling, and other approaches that may include sensory body mapping to enhance communication and pleasure for the couple living with MS.

Multiple Sclerosis in the UK

Multiple sclerosis (MS) is a chronic condition that affects quality of life (QOL), leads to disability and requires ongoing care inputs. Few studies have examined the impact of QOL, disability and demographic characteristics on treatment costs. To investigate the links between service use, costs, QOL and disability for people with MS. A cross-sectional study was conducted in people with MS who were members of the Multiple Sclerosis Society of Great Britain and Northern Ireland. A questionnaire, consisting of sociodemographic questions, the Client Service Receipt Inventory, EQ-5D and Guy's Neurological Disability Scale (GNDS), was sent to 4000 members of the Society. Service and lost employment costs were calculated. Regression models were developed to identify the participant characteristics that were associated with costs, QOL and disability. All costs are presented in year 2006-7 values. Questionnaires were returned by 1942 members (48.9%). The mean (SD) EQ-5D QOL score was 0.41 (0.34), whilst the GNDS disability score was 20.8 (8.9). The mean (SD) service cost over the preceding 6 months was pound8397 ( pound10,404), and most of this (71.6%) was due to informal care. Only a small amount of cost (8.1%) was due to the use of disease-modifying drugs and drugs for spasticity. Lost employment costs amounted to a mean of pound4240. Higher costs were associated with higher levels of disability and lower levels of health-related QOL. This study showed that MS participants had high levels of service use, and that QOL was low in comparison with other conditions. There were significant associations between costs, QOL and disability.

Validation of the brazilian version of Guy's neurological disability scale

The Guy's neurological disability scale (GNDS) has recently been introduced as a new measure of disability in multiple sclerosis. It is patient-oriented, multidimensional, and not biased towards any particular disability. The purpose of the present study was to validate the Brazilian version of the GNDS. The adaptation of the scale was based on the translation/back-translation methodology. Sixty-two patients with clinically definite multiple sclerosis (CDMS) according to Poser's criteria were recruited for this study. GNDS was administered individually to each subject. The EDSS and the ambulation index (AI) scores were assigned by a neurologist. The intraclass correlation coefficient and the Cronbach's alpha values of the Brazilian version of GNDS (0.94 and 0.83, respectively) were comparable to the original one (0.98 and 0.79, respectively). Furthermore, the factor analysis of the Brazilian version of GNDS suggested, as the original article, a four-factor solution which accounted for 68.8% of the total variance. The Brazilian version of GNDS was found to be clinically relevant as it correlated significantly with the EDSS and AI. In conclusion, the Brazilian version of GNDS can be considered an important tool to evaluate the disability in MS patients, with clinical usefulness and psychometrics soundness.

Psychometric Testing of the Americanized Version of the Guyʼs Neurological Disability Scale

The Guy's Neurological Disability Scale (GNDS) was originally developed in the United Kingdom to measure disability in multiple sclerosis (MS). The purpose of this study was to test the reliability, validity, and sensitivity of the Americanized version of the GNDS. The following five research questions were considered: (1) Is there convergent validity of the Americanized version of the GNDS as evidenced by a significant relationship with the Short Form 36 (SF-36) and Activities of Daily Living Self-Care for MS Scale? (2) Does the Americanized version of the GNDS have the same four-factor structure as reported in the psychometric testing of the original GNDS? (3) Is the Americanized version of the GNDS a reliable measure when examined with a 2-week retest? (4) Does the Americanized version of the GNDS have internal consistency? (5) Is the Americanized version of the GNDS sensitive to changes in neurological disability from MS over time? Participants were diagnosed with relapsing-remitting MS and a history of one or more relapses in the previous 2 years. The sample included 253 participants--87% were women (n = 219), 13% were men (n = 32), and two participants did not indicate their sex. They ranged in age from 22 to 77 years (M = 46, SD = 9). The Americanized version of the GNDS was found to be a reliable, valid, and sensitive multidimensional measure of neurological disability for individuals with MS.

Reduction in disability in a randomized controlled trial of telephone-administered cognitive-behavioral therapy.

The authors examined the efficacy of telephone-administered cognitive-behavioral therapy (T-CBT) and telephone-administered supportive emotion-focused therapy (T-SEFT) in reducing disability among disabled patients with multiple sclerosis and depression. Telephone administration of therapy allowed care to be delivered to a more disabled population. This is a secondary analysis of a randomized controlled trial; the primary outcome results for depression are reported in D. C. Mohr, S. L. Hart, L. Julian, C. Catledge, L. Honos-Webb, L. Vella, et al. (2005). A randomized controlled trial, comparing 16 weeks of T-CBT with T-SEFT. Disability was measured using Guy's Neurological Disability Scale; fatigue was measured using the Fatigue Impact Scale; depression was measured using the Hamilton Depression Rating Scale and the Beck Depression Inventory-II. Patients in both treatments showed significant improvements in disability and fatigue. These improvements were related to reductions in depression. T-CBT produced significantly greater decreases in disability and fatigue, compared with T-SEFT, even after controlling for depression. The greater benefit of T-CBT on disability was mediated by physical fatigue. These findings support the hypothesis that significant reductions in disability can be achieved by reducing depression in patients with multiple sclerosis. There was also evidence that further reductions could be achieved through CBT-specific interventions that include a focus on symptoms such as fatigue management.

How similar are commonly combined criteria for EDSS progression in multiple sclerosis?

Introduction Measuring disease progression is an important aspect of multiple sclerosis (MS) clinical trials. Commonly applied disability endpoints include time to clinically meaningful Expanded Disability Status Scale (EDSS) change, or the number of patients in whom such a change has occurred. Typically, clinically meaningful EDSS change has been defined as a change of 1.0 point on Kurtzke’s EDSS in patients with an entry EDSS score of 5.5 or lower, or 0.5 point in patients with a higher EDSS score. Our goal was to evaluate whether these changes can be considered as similar. Therefore, we compared EDSS changes to corresponding changes in the Guy’s Neurological Disability Scale (GNDS), which is a measure of patient perceived disability, and the Multiple Sclerosis Functional Composite (MSFC), which is an examination-based quantitative scoring of neurological impairment. Methods From a large longitudinal database, we selected two groups of patients with a clinically meaningful change in EDSS score according to the usual criteria: patients with EDSS change]/1.0 for baseline EDSS 5/5.5 and patients with EDSS change]/0.5 for baseline EDSS]/6.0. We compared changes in GNDS sum score and in MSFC score between both groups. Results In the group with baseline EDSS]/6.0, GNDS and MSFC changes were higher than in patients with baseline EDSS 5/5.5. The difference in change was 1.00 (95% confidence interval (CI): / 0.35 to 2.36) for the GNDS and 0.412 (95% CI: 0.300-0.525) for the MSFC. Conclusion Our results indicate that a 0.5 point EDSS change in patients with baseline EDSS / 6.0 cannot be considered equal to a 1.0 point change in patients with baseline EDSS 5/5.5.

Clinical impact of 20% worsening on Timed 25-foot Walk and 9-hole Peg Test in multiple sclerosis

Introduction: Quantitative tests of motor function, like the Timed 25-foot Walk (T25FW) and 9-hole Peg Test (9HPT), are increasingly being applied as outcome measures in multiple sclerosis (MS) clinical trials. The quantitative nature of the data has a favorable impact on responsiveness, but the clinical impact of the changes is uncertain. The goal of this study was to assess whether a change on T25FW and 9HPT does indeed have a clinical meaning. This was accomplished by comparing 20% changes on these quantitative measurements to concomitant changes on the Guy’s Neurological Disability Scale (GNDS), a scale which measures patient-perceived daily life disability. Methods: From a longitudinal database, we selected patients with at least two measurements of T25FW, 9HPT and GNDS with a minimal time interval of 350 days. In those patients who experienced at least a 20% change on T25FW or 9HPT, GNDS score changes were examined more closely. Results: Of 527 patients, 143 experienced a >20% worsening on their T25FW and 71 on their 9HPT, respectively. Patients with a 20% increase in T25FW or 9HPT had more GNDS worsening than patients without such an increase. GNDS worsening associated with an increase in T25FW was mainly due to an increase in perceived disability related to lower extremity function and fatigue; GNDS worsening associated with an increase in 9HPT was more diffuse with respect to domains involved. Conclusion: Worsening on T25FW or 9HPT has a clinical impact on disability, as perceived by MS patients during daily life functioning.

Therapy by Phone Helpful When Office Visit Difficult

Back to table of contents Previous article Next article Clinical & Research NewsFull AccessTherapy by Phone Helpful When Office Visit DifficultEve BenderEve BenderSearch for more papers by this authorPublished Online:7 Oct 2005https://doi.org/10.1176/pn.40.19.00400024For most, the telephone is a way to reach out to friends and family. Now, researchers at the University of California, San Francisco (UCSF), have discovered that the phone may also be an essential tool in depression treatment for some patients.In a study of 120 patients with multiple sclerosis who had been diagnosed with depression, depression symptoms lifted in those who received either telephone-administered cognitive-behavioral therapy (T-CBT) or telephone-administered supportive emotion-focused therapy (T-SEFT).However, a greater percentage of those who received T-CBT experienced a reduction in depressive symptoms when compared with those who received T-SEFT.The results appeared in the September Archives of General Psychiatry.David Mohr, Ph.D., the study's lead investigator and an associate professor of psychiatry at UCSF, recruited 120 patients who had been diagnosed with multiple sclerosis from the Kaiser Permanente Medical Care Group of Northern California and from regional chapters of the National Multiple Sclerosis Society.To be included in the study, patients had to have a score of 3 or higher (of a possible score of 6) on the Guy's Neurological Disability Scale, a score of 16 or higher on the Beck Depression Inventory, and 14 or higher on the Hamilton Depression Rating Scale (HDRS).Researchers used these and other instruments, including the Structured Clinical Interview for DSM-IV and the Positive and Negative Affect Scale, to assess patients for up to a year after the initial assessment.The patients were randomized to receive T-CBT or T-SEFT from a doctoral-level psychologist once a week for 16 weeks. About the same percentage of patients in both groups were taking an antidepressant during the study.According to Mohr, T-CBT is similar to standardized, face-to-face CBT, but is administered over the phone. Therapists taught patients skills to help them manage cognitions and behaviors that can contribute to depression.The goal of T-SEFT was to increase patients' awareness of emotions such as anger that, when unacknowledged, could contribute to depression, according to proponents of the therapy.The authors said that “patients showed significant improvements in depression and positive affect during the 16 weeks of telephone-administered treatment” but that T-CBT brought about greater improvement in depression than did T-SEFT.For instance, at week 16, patients in the T-CBT group had significantly improved scores compared with those of the T-SEFT group on the HDRS (p=.02) and the Positive and Negative Affect Scale (p=.008).In addition, at the week 16 assessment, just eight patients in the T-CBT group still met criteria for a diagnosis of depression, while 18 in the T-SEFT group did (p=.02).Despite recognizing that telephone-administered psychotherapy is not ideal in all circumstances, Mohr told Psychiatric News that he believes that “patients and therapists can form meaningful, therapeutic relationships over the phone” and that telephone-administered psychotherapy may be the only way to reach some patients who have no access to traditional psychotherapy provided in an office or clinic.Some patients, for example, may have problems getting to a therapist's office due to physical disabilities, as is the case with some people with multiple sclerosis. Others may face a range of treatment barriers including difficulties related to transportation, time, stigma, and child- or elder-care issues, Mohr noted.The study's very low attrition rate—5 percent as compared with 25 percent in trials of face-to-face psychotherapy, according to the report—may support the belief that telephone-administered psychotherapy reduces the barriers that keep some individuals from receiving psychotherapy in person, Mohr noted.However, the report pointed out that T-CBT may not be indicated for all patients and that “it will be important to examine if the outcomes of telephone-administered therapies are equivalent to face-to-face interventions....”Future research should also investigate whether telephone-administered psychotherapy may be helpful to people with depression who have little or no access to treatment in the wake of a disaster such as Hurricane Katrina, he said.“What has not been studied is the use of these treatments in disaster situations, where there may be a sudden need for counseling and intervention” for survivors.An abstract of “Telephone-Administered Psychotherapy for Depression” is posted at<http://archpsyc.ama-assn.org/cgi/content/abstract/62/9/1007>.▪ Arch Gen Psychiatry 2005 62 1007 ISSUES NewArchived

A pilot study of the effect of aerobic exercise on people with moderate disability multiple sclerosis

A pilot study to investigate the effect of aerobic exercise on the mobility and function of people with moderate disability multiple sclerosis (MS). A small group, comparative, pre- and post-intervention study. A gymnasium within a general hospital. Eight subjects, all female, average age 45 years (range 33-61) with moderate disability MS (Kurtzke scale 4-6), were recruited; six completed the study. Intervention consisted of bi-weekly sessions of 30 min cycling on a static bike at their maximal level of exertion for 12 weeks. The stability of each individual's condition was established pre-intervention using three baseline assessments over two weeks. A battery of tests (the 10-metre and 6-min walk tests, the Functional Reach, the Gulick and the Guys Neurological Disability Scale) were completed pre and post intervention. Potential negative effects were recorded on the Fatigue Severity Scale and the Modified Ashworth Scale. An independent rater completed assessments post intervention. Inter-rater reliability was found to be acceptable. Comparisons pre and post intervention (Wilcoxon signed ranked test) showed significant improvement on the Guys Neurological Disability Scale (p = 0.026), with the mean score reducing from 13 to 9, and the 6-min walk test (p = 0.046), with the mean distance increasing from 200 m to 261 m. Other measures failed to reach significance. Findings from this pilot study suggest overall disability and mobility improved with the aerobic training. A positive treatment effect in this small study suggests the need for a larger trial. Knowledge of how to establish predictive heart rate and how to monitor the effects of cycling with people with MS will be used to inform future clinical trials.

Relation between objective and subjective measures of bladder dysfunction in multiple sclerosis

The authors studied 297 patients with multiple sclerosis (MS), correlating urinary symptoms (bowel/bladder Functional System [FS] score of the Expanded Disability Status Scale [EDSS] and bladder dysfunction score of the Guy's Neurological Disability Scale [GNDS[) vs objective measurement of bladder dysfunction (postmicturition residual volume). EDSS and GNDS were of no value for predicting the presence of a clinically relevant postvoiding volume. Therefore, the authors recommend ultrasound scanning of residual volume in every patient with MS, even in the absence of subjective urinary symptoms.

Multiple Sclerosis Impact Scale (MSIS-29): relation to established measures of impairment and disability.

To validate the newly developed Multiple Sclerosis Impact Scale (MSIS-29) in a large, well characterized, independent group of MS patients by investigating the relation between the MSIS-29 and the Guy's Neurological Disability Scale (GNDS), the Expanded Disability Status Scale (EDSS) and the MS Functional Composite (MSFC). Two hundred MS patients were recruited at our outpatient department. At the same visit GNDS, EDSS, MSFC and MSIS-29 were assessed. Data obtained from GNDS, EDSS and MSFC assessment were compared to both physical and psychological impact scores of the MSIS-29. In addition the contribution of GNDS subcategories, EDSS functional systems and MSFC components to the physical and psychological impact scores of the MSIS-29 was studied. Median scores were 37.5 for the physical and 22.2 for the psychological impact score of the MSIS-29, 13.0 for GNDS and 4.0 for EDSS. Mean MSFC was 0.07. The physical impact score showed good correlations with both GNDS (0.79) and EDSS (0.68) and a moderate correlation with the MSFC (-0.53). The psychological impact score showed weak correlations with EDSS (0.22) and MSFC (-0.30) and a moderately strong correlation with the GNDS (0.58). In 50 (25%) patients, scores on physical and psychological impact scales diverted, i.e., a relative high score on one scale combined with a relative low score on the other scale. This was related to the clinical disease course. Our study supports the use of the MSIS-29 as a measure for the assessment of physical impact of MS on normal daily life. In addition, our data provides a deeper understanding of the factors that determine both physical and psychological disease impact. Discrepancies between the latter two aspects deserve further attention.

The patient's perception of a (reliable) change in the Multiple Sclerosis Functional Composite.

To prospectively characterize the relation between two-year changes in functional impairment as measured by the Multiple Sclerosis Functional Composite (MSFC) and changes in patient perceived disability as measured by the Guy's Neurological Disability Scale (GNDS). One hundred and eighty-eight patients with multiple sclerosis (MS) were recruited at our outpatient clinic. Impairment and disability were assessed using the MSFC and GNDS at baseline and follow-up. Longitudinal correlations were studied between changes in MSFC and GNDS and their corresponding components. We also studied changes in GNDS in relation to what can be classified as a reliable change in MSFC; for example, 20% change in each MSFC component or a change of 0.5 in total MSFC score. In addition, we studied the change in total number of GNDS subcategories with a score of 3 or higher in relation to the predefined MSFC changes, these subcategories being indicative of the requirement for help by another person. Despite good cross-sectional correlations between MSFC and GNDS, no significant correlation was found between longitudinal changes in MSFC and GNDS. Analysing the change in GNDS in relation to the predefined MSFC changes shows that GNDS changes are nicely rank ordered when more stringent definitions of reliable change were applied. In addition, analysing the number of GNDS subcategories scored 3 or higher indicate that there is a profile of worsening on the MSFC being associated with increase in the amount of help required from others. Our longitudinal data suggest that a reliable change is associated with a likewise change in patient perceived disability, the smallest reliable change being identified by at least 20% change in each MSFC component.

Assessing mood in patients with multiple sclerosis

To assess the validity and reliability of mood measures for use with people with multiple sclerosis (MS). Four mood measures designed for use with people with communication and cognitive problems were completed; two were completed with the patient at interview and two by hospital staff or carers of the patients. This procedure was repeated two weeks later to assess test-retest reliability. People with MS at a rehabilitation unit (n = 22) and living in the community (n = 27). The Stroke Aphasic Depression Questionnaire (SADQ) and Signs of Depression Scale (SODS) were completed by rehabilitation unit staff or by carers of the patients. An assistant psychologist completed the Visual Analogue Self-Esteem Scale (VASES) and the Visual Analogue Mood Scales (VAMS) with each patient. The Guy's Neurological Disability Scale (GNDS) was administered to assess physical disability. Nonprofessional carers were asked to complete the General Health Questionnaire 12 (GHQ-12) about themselves. In both samples there were significant correlations between scores on the two self-report measures (VASES and VAMS) (r(s) = 0.51-0.79) and between scores on the two observational measures (SADQ and SODS) (r(s) = 0.62-0.81) but not between the observational and self-report measures. There was a significant correlation between the SODS and the carer GHQ (r(s) = 0.68, p < 0.01), indicating that carer mood influenced reporting of patients' mood. There was no significant influence of profession on the observational measures, indicating good inter-rater reliability. Test-retest reliability was high for patients in the community but not for patients in hospital. In both the inpatient and community samples, the self-report and observational mood measures appeared to be measuring different aspects of patients' mood. Further investigation is needed to determine which of these is providing the most accurate information.