Validity of physical activity measures in ambulatory individuals with multiple sclerosis

Purpose. The literature suggests that individuals with multiple sclerosis (MS) engage in less physical activity than non-diseased individuals. That conclusion, however, depends upon the validity of scores from measures of physical activity among the MS population. This study evaluated the validity of scores from two self-report surveys, a pedometer, and an accelerometer and during seven days of free-living conditions among individuals with MS.

Method. Participants were 30 individuals (28 females, two males) with an established definite diagnosis of MS. The participants wore a pedometer and a single-axis accelerometer during the waking hours of a 7-day period. After the 7-day period, participants returned to the lab and completed a self-administered physical activity questionnaire and then underwent a 7-day physical activity recall.

Results. There were strong correlations (a) between scores from the two self-report measures of physical activity and (b) between scores from the two objective measures of physical activity, and (c) weaker, but moderate-to-strong correlations between scores from the self-report and objective measures of physical activity.

Conclusion. Our results support the quantification of physical activity among those with MS using validated self-report and objective measures.     

Measuring fatigue in people with multiple sclerosis

Objective: To compare methods of assessing fatigue.

Design: Cross sectional.

Setting: Community.

Subjects: Forty Multile Sclerosis (MS) patients and 20 healthy controls.

Main outcome measures: Fatigue questionnaires, SDSA dot cancellation test, finger tapping test, TEA Lottery.

Results: The MS patients had significantly higher levels of fatigue than the controls on the Task Induced Fatigue Scale, Fatigue Severity Scale and Fatigue Impact Scale. The Task Induced Fatigue Scale completed whilst imagining oneself driving and the Fatigue Assessment Instrument did not differentiate between MS patients and controls. Finger tapping differentiated between MS patients and controls but there was no significant difference between MS patients and controls on visual and auditory concentration tests. A factor analysis indicated that questionnaire measures of fatigue were inter-related but independent of objective test performance.

Conclusions: Questionnaire measures can be used to assess fatigue in people with MS. The FSS differentiated MS patients from controls and is relatively short. It was therefore recommended for clinical use.     

Increasing physical activity in multiple sclerosis: replicating Internet intervention effects using objective and self-report outcomes

Our previous research indicated that an Internet intervention was effective in increasing self-reported physical activity in persons with multiple sclerosis (MS). The present study examined the efficacy of the same Internet intervention in persons with MS by using both objective and self-report measures of physical activity. Participants (N = 21) wore an accelerometer around the waist for 7 days and then completed the International Physical Activity Questionnaire (IPAQ) and Godin Leisure-Time Exercise Questionnaire (GLTEQ) before and after receiving the 12-week Internet intervention. The Internet intervention resulted in moderate increases in accelerometer activity counts (d = 0.68) and steps counts (d = 0.60), and this was paralleled by small increases in IPAQ (d = 0.43) and GLTEQ (d = 0.34) scores. The number of weeks that persons logged on was correlated with change in accelerometer activity counts (r = 0.42) and step counts (r = 0.37) but not change in IPAQ (r = 0.10) or GLTEQ (r = 0.08) scores. The novel contribution of this study was the observation that an Internet intervention was efficacious for increasing physical activity in persons with MS by using both objective and self-report measures.     

Smoking rates and smoking cessation among individuals with multiple sclerosis

Purpose. Adults with physical disabilities tend to smoke at higher rates than smokers in the general population. No study to date, however, has assessed smoking prevalence and cessation among individuals with multiple sclerosis (MS). Such information is critically needed because smoking is more deleterious for individuals with MS than for smokers without MS and increases MS risk.

Method. Questionnaires were sent to 700 National Multiple Sclerosis Society Rhode Island Chapter members.

Results. Based on a 50% response rate, results demonstrated a 15.2% current smoker prevalence rate, which is lower than USA and Rhode Island general adult population averages. Individuals who smoked, however, tended to be heavy smokers, consuming 20 - 30 cigarettes daily, and had been smoking 10 years or longer. Smokers varied in their interest in quitting but seemed confident in their ability to do so. Respondents reported that it was difficult to quit because smoking was pleasurable; smoking was helpful in coping with boredom and with having MS; withdrawal symptoms were unpleasant; and treatment for tobacco dependence was expensive.

Conclusions. Efficacious smoking cessation interventions for smokers with MS should be developed to address a critical health need for a population of highly nicotine-dependent smokers who face numerous obstacles to quitting.     

Adaptation of a seated postural control measure for adult wheelchair users

Purpose. Clinical measures of seated postural control in adults are not standardized and most are derived from in-house tools. The purpose of this study is to adapt a pediatric instrument to evaluate seated postural control in adult wheelchair users.

Method. The new instrument is called the Seated Postural Control Measure for Adults (SPCMA) 1.0. Five preliminary versions were pretested with some 20 adults by two raters and a group of experts.

Results. This instrument comprises three sections: Section 1, level of sitting scale for adults (1 item, 7-point ordinal scale); Section 2, static postural alignment (22 items, 7-point ordinal scale); and Section 3, postural alignment after a dynamic activity, propulsion of the wheelchair on flat terrain and an incline (22 items, 7-point ordinal scale).

Conclusions. The SPCMA for Adults 1.0 improves the quality and uniformity of evaluations done by different raters, which facilitates more rigorous follow-up of clients over time, communication between professionals, and objective verification of the attainment of intervention objectives.     

Evaluation of gross motor abilities and self perception in children with amblyopia

Purpose. The present study evaluates gross motor abilities and self perception about the physical abilities of pre-school children with amblyopia, in comparison to their unaffected peers.

Method. Twenty-two children with amblyopia, and 25 children with normal vision, aged 4 - 7, were included in this study. Gross motor abilities were evaluated by the Movement Assessment Battery for Children (MABC). The Pictorial Scale of Perceived Competence and Social Acceptance for Young Children were used to measure physical self perception. Parents completed a questionnaire about everyday situations revolving around the child's balance and posture abilities.

Results. Amblyopic children performed significantly worse than the controls according to the MABC subtests and the parents' questionnaire total score. In the scale of perceived competence evaluation the amblyopic children had lower scores in half of the items as well as in the total mean score, but the differences between the groups were not significant. Among the study group, significant correlations were found between several items in the parents' questionnaire and the children's' mean balance score in MABC.

Conclusions. Amblyopia may negatively impact children's motor abilities as expressed by the objective measures in daily living, while self perception is less affected.     

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.     

A pilot study of a web-based physical activity motivational program for adults with physical disabilities

Purpose. Develop, deliver, and assess the efficacy of a 4-week web-based leisure-time physical activity (LTPA) motivational program based on the Transtheoretical Model and tailored to inactive adults with physical disabilities.

Method. This was a pilot-based study incorporating a true experimental design with one treatment and one control group. The intervention program was delivered on the web and was based on the constructs of the Transtheoretical Model. From the 151 individuals who completed the LTPA standardized questionnaire at baseline, 75 people participated in the 1-month post-test assessment.

Results. The results of the analysis confirmed the pretest LTPA scores as the study covariate for the post-test assessment (F (1,72) = 16.06, p = 0.001, η² = 0.18). Based on the one-way ANCOVA, there were no statistically significant differences in LTPA scores between the treatment and control groups at post-test. However, the corresponding effect size and variance explained by the treatment approached a moderate level of significance (d = 0.34 and η² = 0.04).

Conclusions. Although conclusive statements about program effectiveness cannot be secured, several 'lessons learned' from this project may be 'key factors' for program improvement. Given the pilot nature of the study and the limited resources for program development and monitoring, continued examination of such motivational materials and delivery mechanisms for people with physical disabilities appear warranted.     

Secondary conditions in spinal cord injury: results from a prospective survey

Study design. Prospective, self-report mail survey with two points of measurement one year apart.

Objectives. To determine significant predictors of pressure ulcers (PU) and urinary tract infections (UTI) in adults with spinal cord injury (SCI) over 2 years.

Setting. Non-institutionalized adults with SCI living in the United States of America.

Methods. Secondary data analysis from 2 consecutive years. Independent variables included demographic, healthcare-related, functional, access to care, and health behavior measures. Dependent variables were the occurrence of PU and UTI at Time 2.

Results. Bivariate analyses showed significant associations between various independent variables and the occurrence of PU and UTI at Time 2. Separate logistic regression analyses for PU and UTI at Time 2 as dependent variables showed that PU at Time 1, not being married or cohabiting, not having access to primary care services when needed, and reporting a greater number of activities of daily living (ADL) requiring assistance were significant predictors of PU at Time 2. UTI at Time 1, a greater number of ADLs requiring assistance, and not engaging in weekly exercise are significant predictors of subsequent occurrence of UTI.

Conclusions. Findings support previous research, and indicate the need for increased efforts to provide SCI self-management education to at-risk subpopulations, including individuals with greater personal assistance needs and functional limitations.     

What can we learn from the personal insights of individuals living and coping with multiple sclerosis?

Purpose. The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life.

Methods. Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions.

Results. Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed.

Conclusion. The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.     

Assessing quality of life in people with multiple sclerosis

Purpose : The quality of life of multiple sclerosis (MS) patients was assessed using two MS specific quality of life measures (FAMS and SF-54) and a short generic measure (EuroQol) in order to make recommendations for routine assessment. Factors contributing to quality of life within this population were also considered.

Method : Questionnaires were either sent by post or completed at interview. Ninety-six MS patients known to a consultant in rehabilitation medicine completed the questionnaires.

Results : Patients scored very low on subscales related to physical health. Correlations were high between the FAMS and SF-54 but low with the EuroQoL. Stepwise multiple linear regressions showed mood measures to account for the most variance on all quality of life composite scores. The MS patients within the study had much lower SF-36 quality of life scores than the general population and other illness groups.

Conclusions : The EuroQol did not measure the same aspects of quality of life as the FAMS and SF-54 and was not found to be a sensitive measure within this sample. The SF-54 suffered from floor effects on physical health subscales and therefore the FAMS was recommended.     

Comparing self-report, clinical examination and functional testing in the assessment of work-related limitations in patients with chronic low back pain

Purpose. To compare the work-related limitations assessed using self-report, clinical examination and functional testing in patients with chronic low back pain (CLBP).

Methods. Work-related limitations of 92 patients were assessed using self-report, clinical examination and functional testing. To obtain the assessed limitations the patient (self-report), the physician (clinical examination) and a trained evaluator (functional testing) completed a scorings form about the work-related limitations of the patient. The Isernhagen Work Systems Functional Capacity Evaluation (IWS FCE) was used to obtain the functional testing results. A κ value of more than 0.60, absolute agreement of more than 80% and ICC of more than 0.75 were considered as acceptable.

Results. Little agreement and correlation among self-report, clinical examination and functional testing were found for the assessment of work-related limitations. Self-reported limitations were considerably higher than from those derived from clinical examination or functional testing. Additionally, the limitations derived from the clinical examination were higher than those derived from the IWS FCE.

Conclusion. Comparing self-report, clinical examination and functional testing for assessing work-related limitations in CLBP patients showed large considerable differences in limitations. Professional health care workers should be aware of these differences when using them in daily practice.     

Cognitive functioning of adolescents and young adults with meningomyelocele and level of everyday physical activity

Purpose. To explore whether cognitive functioning in patients with meningomyelocele (MMC) is related to level of everyday physical activity.

Method. In a cross-sectional study in 14 patients with MMC (aged 14 - 26 years) a neuropsychological test battery was administered to each patient. Everyday physical activity of the patients was measured with an accelerometry-based Activity Monitor (AM), and compared to 14 healthy comparison subjects.

Results. Intellectual ability of 10 patients was in the normal range. For memory and verbal learning, executive functioning, divided attention and reaction speed subnormal scores were present in six or more patients. Time spent on dynamic activities was low in patients with MMC as compared to healthy subjects. After controlling for intellectual ability, we found that in patients with MMC (i) executive functioning was positively related, and (ii) word production was negatively related to everyday physical activity.

Conclusion. We found some indication that specific impairments in executive functioning might be related to everyday physical activity of adolescents and young adults with MMC.     

Leisure-time physical activity and secondary conditions in women with physical disabilities

Purpose: To examine the relationship between secondary conditions and leisure-time physical activity participation (LTPA) in women with physical disabilities.

Method: A survey was conducted in a metropolitan urban USA area of women (n = 170) with physical disabilities including MS, CP, polio, arthritis, TBI, and CVA among others and aged 21 - 65 years. Outcome measures were LTPA, secondary conditions (numbers and severity), and functional status.

Results: Respondents experienced 11.99 ( ± 6.05) secondary conditions in the past year, self-rated their severity as 'moderate problems', and reported moderate levels of functional impairment. LTPA participation (excluding calisthenics/exercise) was reported to be 2.90 ( ± 5.12) times/week with 39.4% reporting no participation. After controlling for the interaction between severity of secondary conditions and functional status, the secondary conditions of physical deconditioning and isolation were significantly and inversely related to LTPA participation (r = - 0.164, p = 0.036; r = - 0.156, p = 0.045, respectively).

Conclusion: Reported secondary conditions of physical deconditioning and isolation are inversely related to the ability of moderately impaired women with physical disabilities to participate in LTPA when functional status was controlled and should be considered in efforts to increase involvement in this health promoting behaviour.     

Multiple joint pain and lower extremity disability in middle and old age

Purpose. To determine whether the extent of multiple-site lower extremity joint pain contributes to disability in middle and old age and describe patterns of severity in site-specific measures amongst those with multiple-site pain.

Method. Population-based, cross-sectional postal survey. Adults aged 50 years and over registered with three general practices and reporting pain lasting one month or longer in the previous year in at least one hip, knee, or foot were included. Respondents completed a generic measure of physical function and site-specific measures of severity for each relevant joint pain.

Results. Of 2429 eligible participants, 1801 reported multiple-site lower limb joint pain. Lower limb joint pain count was independently associated with reduced physical function after adjusting for a range of covariates. The severity of pain and disability attributed to each site increased as the number of painful sites increased.

Conclusion. Many older people with joint pain in the lower limb have more than one joint affected. Generic and site-specific measures of disability both show the same pattern of reduced physical function. Treatment targeted at a single joint may have only a marginal effect on reducing disability in individuals with multiple joint involvement unless treatment is also conferring benefit at other sites.     

Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life

Purpose. Cognitive changes occur in over 50% of persons diagnosed with multiple sclerosis (MS). Although previous research has provided information of the nature and severity of cognitive changes among persons with MS, it has offered relatively limited insight on the impact of these changes on levels of functioning and disability. The purpose of this study was to explore the impact of cognitive changes on the lives of four individuals with MS with different life roles (worker, parent, retired older adult).

Method. Qualitative methodologies were used in the study and included multiple open-ended interviews with the study participants and the completion of Cognitive Experience Forms in between interviews. In addition, the Perceived Deficits Questionnaire and a demographics form were administered. Thematic analysis was used to analyse the study data.

Results. Participants described the types of cognitive changes they are experiencing and how these changes affect their ability to participate and engage in desired activities and maintain their primary roles. Participants also talked about how cognitive changes affect their quality of life.

Conclusions. This study points to the complexity of cognitive changes and highlight the importance of addressing these changes in rehabilitation.     

Performance of activities of daily living in multiple sclerosis

Purpose: To assess the performance of activities of daily living (ADL) in individuals with moderate to severe multiple sclerosis (MS).

Method: A total of 12 men and 32 women with MS (Expanded Disability Status Scale, EDSS, 6.0 - 8.5) were studied. The performance of personal ADL (P-ADL) and instrumental ADL (I-ADL) was assessed with the Functional Independence Measure (FIM) and the Assessment of Motor and Process Skills (AMPS).

Results: Twenty-four of the 44 individuals were rated dependent in P-ADL by the FIM motor score, mainly due to limitations in some areas of self-care and in transfers and locomotion. Only three individuals were rated dependent by the FIM cognitive score, indicating no or little cognitive disability. Two thirds of the individuals who were rated independent/modified independent in P-ADL by the FIM were rated dependent in I-ADL by the AMPS. Only the FIM motor score was significantly related to the EDSS score, indicating that ADL performance and disease severity is weakly related.

Conclusions: Moderate to severe MS reduces the ability to perform both P-ADL and I-ADL. An individual with MS can be independent in P-ADL but still unable to perform I-ADL satisfactorily. Assessments of both P-ADL and I-ADL are advocated to evaluate ADL performance in order to implement appropriate management strategies for individuals with MS.