Cancer survivors' exercise barriers, facilitators and preferences in the context of fatigue, quality of life and physical activity participation: a questionnaire-survey.

OBJECTIVE: To investigate the exercise barriers, facilitators and preferences of a mixed sample of cancer survivors as well as fatigue levels, quality of life (QoL) and the frequency and intensity of exercise that cancer survivors typically engage in. METHODS: An anonymous, postal questionnaire-survey with a convenience sample of 975 cancer survivors was used. Standardised measures were used to establish fatigue (Multidimensional Fatigue Symptom Inventory-Short Form), QoL (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30), exercise frequency and intensity (Leisure Score Index). RESULTS: A 52.3% response rate (n = 456) was achieved. A total of 76.0% were female, with stage I (18.3%) or stage II (21.0%) breast cancer (64.4%), and 62.3% were ≥ 3 years post treatment. A total of 73.5% reported fatigue with 57.2% experiencing fatigue on a daily basis. A total of 68.1% had never been given any advice on how to manage fatigue. A total of 9.4% reported to engage in strenuous physical activity, 43.5% in moderate physical activity and 65.5% in mild physical activity. Respondents experienced difficulties with emotional, cognitive and social functioning and the symptoms of fatigue, insomnia and pain. Barriers that interfered with exercise 'often/very often' were mainly related to respondents' health and environmental factors. A total of 50.2% were interested in exercise and 52.5% felt able to exercise. Exercise facilitators, preferences and motivators provide some insight into cancer survivors' needs in terms of becoming more physically active. CONCLUSIONS: Although cancer survivors continue to experience fatigue and QoL issues long after treatment completion, over half are willing and feel able to participate in exercise. Exercise barriers were mainly health related or environmental issues, however, the main barriers reported were those that had the potential to be alleviated by exercise.

A focus group study exploring gynecological cancer survivors' experiences and perceptions of participating in a RCT testing the efficacy of a home-based physical activity intervention.

PURPOSE: This study aims to explore gynecological cancer survivors' perceptions and experiences following participation in a randomised controlled trial (RCT) testing the efficacy of a home-based physical activity behavioral change intervention (Donnelly et al., Gynecol Oncol 122:618-624, 2011). METHODS: All participants completing a two-armed parallel RCT were invited to participate in the study (31/33) (Donnelly et al., Gynecol Oncol 122:618-624, 2011). Sixteen participants took part (16/31; physical activity (PA) group n = 9, contact control (CC) group n = 7). Four qualitative group interviews were conducted (focus group size 3-5). A structured interview guide was followed by an independent moderator. Groups were audio recorded, transcribed verbatim, and analyzed using the framework approach (Ritchie and Spencer 2001), a five-stage qualitative method of analysis. RESULTS: One of the most unanimously perceived benefits of taking part in the programme regarded participants' psychological well-being. Additional benefits included improved physical fitness and functioning. Important programme features included the weekly telephone calls from a physiotherapist, the patient-professional relationship, and goal setting. Participants' own motivation and programme timing were also identified as important factors. Suggestions for improvements include: opportunities for social interaction with other gynecological cancer survivors and greater exercise choice. CONCLUSION: Findings suggest that women diagnosed with gynecological cancer perceive participation in physical activity as important and participation provides benefits in terms of psychological well-being and improved physical functioning. Support for continuation of many of the current features of the home-based programme was provided. Findings provide insight and rationale for the selection of components for future home-based physical activity interventions. Findings also support further research into the development of multidimensional interventions for the gynecological cancer population.

A randomised controlled trial testing the feasibility and efficacy of a physical activity behavioural change intervention in managing fatigue with gynaecological cancer survivors.

OBJECTIVE: To determine the feasibility and efficacy of a physical activity behavioural change intervention in managing cancer-related fatigue among gynaecological cancer survivors during and post anti-cancer treatments. METHODS: A two arm, single blind, randomised controlled trial was conducted within the Northern Ireland regional Cancer Centre. Thirty three sedentary gynaecological cancer survivors (stage I-III; ≤3 years post diagnosis), experiencing cancer-related fatigue (mild-severe) took part. Participants were randomly assigned to a behavioural change, moderate intensity physical activity intervention (n=16) or a Contact Control group (n=17). The primary outcome was fatigue (Multidimensional Fatigue Symptom Inventory-Short Form and Functional Assessment in Chronic Illness Therapy-Fatigue subscale). Secondary outcomes included quality of life, physical functioning, positive and negative affect, depression, body composition, sleep dysfunction and self-reported physical activity. Feasibility was assessed based on the recruitment rate, programme and physical activity adherence and participants' programme evaluation, including optional focus groups (n=16). RESULTS: Twenty five percent of eligible women took part (33/134). Participants were 8.7 (SD=9.1) months post diagnosis, with a mean age of 53 (SD=10.3) years. The majority of the sample had a diagnosis of ovarian (n=12) or endometrial cancer (n=11). Significant differences favouring the intervention group were observed for fatigue at 12 weeks and 6 months follow-up (12 week: mean difference=-11.06; 95% confidence interval (CI)=-21.89 to -0.23; effect size (d)=0.13; p=0.046; 6 month: mean difference=-19.48; 95% CI=-19.67 to -19.15; effect size (d)=0.20; p=0.01). A mean of 10 calls (SD=1.2 calls) were delivered to the Physical Activity Group, and 10 (SD=1.6 calls) to the CC group. The intervention was positively perceived based on exit questionnaire and focus group findings. CONCLUSIONS: A physical activity behavioural change intervention for gynaecological cancer survivors is feasible in terms of participants' programme adherence and evaluation, and the intervention demonstrates improvements in fatigue. However, confirmation in the form of a larger fully powered RCT is warranted.

Reflexology for the treatment of pain in people with multiple sclerosis: a double-blind randomised sham-controlled clinical trial.

Multiple sclerosis (MS) results in pain and other symptoms which may be modified by conventional treatment, however, MS is still not curable. Several studies have reported positive effects of reflexology in the treatment of pain, however, no randomised controlled clinical trials for the treatment of pain have been conducted within this population. The objective of this study was to investigate the effectiveness of reflexology on pain in and MS population. We randomly allocated 73 participants to receive either precision or sham reflexology weekly for 10 weeks. Outcome measures were taken pre-and post-treatment with follow-up at 6 and 12 weeks by a researcher blinded to group allocation. The primary outcome measure recorded pain using a Visual Analogue Scale (VAS). A significant (p < 0.0001) and clinically important decrease in pain intensity was observed in both groups compared with baseline. Median VAS scores were reduced by 50% following treatment, and maintained for up to 12 weeks. Significant decreases were also observed for fatigue, depression, disability, spasm and quality of life. In conclusion, precision reflexology was not superior to sham, however, both treatments offer clinically significant improvements for MS symptoms via a possible placebo effect or stimulation of reflex points in the feet using non-specific massage.

Psychosocial adjustment to multiple sclerosis: exploration of identity redefinition.

PURPOSE: As multiple sclerosis (MS) often occurs in the prime of life and is unpredictable in nature, there is likely to be a strong psychological effect, with changes in values and beliefs and how the individual sees him or her self. This article presents the findings of a focus group study which aimed to explore the subjective experiences of living with, and adjusting to, MS. METHOD: Seven individuals who had been diagnosed with MS for at least 5 years reflected on their reactions to being diagnosed, how they cope with the day to day challenges of the disease, and the changes that they have experienced. Data were transcribed verbatim and analysed using interpretative phenomenological analysis. RESULTS: Diagnosis was met with negative reactions: denial, concealment and diminished confidence. However, the majority reported that, over time, there were positive changes in terms of their values and outlook. It would appear that the functional difficulties and psychological challenges, such as uncertainty and depression, are ameliorated to some extent by an increased appreciation for life and spirituality. CONCLUSIONS: The findings provide insight into the psychological process of identity redefinition associated with adjusting to MS. Given this, interventions should target role/identity re-examination to assist individuals with MS in better managing the disease and enjoying life.

The impact of fatigue on communication in multiple sclerosis. The insider's perspective.

PURPOSE: The aim of this study was to investigate the relationship between fatigue and communication in people with MS. METHOD: A phenomenological approach was used in in-depth interviews with 10 people with MS to gain insight into the lived experience of the interaction between MS fatigue and communication. Themes were derived from inductive analysis of verbatim transcripts of the interviews. RESULTS: Participants framed their observations around three major themes. In the first 'revealing communication changes' an increase in the severity of communication symptoms and the onset of new communications symptoms when experiencing fatigue were reported. In the second 'concealing and coping' a range of covert and overt strategies employed to manage fatigue and communication changes were described. Finally the complex interplay between symptoms of fatigue and communication, strategies employed to manage these symptoms and societal attitudes was reported in 'barriers to participation'. CONCLUSIONS: Fatigue impacts on communication impairment, activity and participation. Self reports have an important role to play in clinical assessment of fatigue and communication in MS. Multidisciplinary team input is vital for the effective management of clients with MS fatigue and communication change. Further research into the impact of fatigue on different aspects of communication is required.

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.

Neuromuscular electrical stimulation and the treatment of lower urinary tract dysfunction in multiple sclerosis--a double blind, placebo controlled, randomised clinical trial.

AIMS: Lower urinary tract dysfunction affects up to 75% of the multiple sclerosis population. Results from our recent Pilot Study (McClurg et al., 2006) indicated that a combined programme of pelvic floor muscle training, electromyography biofeedback and neuromuscular electrical stimulation modalities may alleviate some of the distressing symptoms within this population. This clinical trial aimed to evaluate further the efficacy of these interventions and to establish the benefit of neuromuscular electrical stimulation above and beyond that of EMG biofeedback and pelvic floor muscle training. METHODS: 74 multiple sclerosis patients who presented with lower urinary tract dysfunction were randomly allocated to one of two groups - Group 1 received Pelvic Floor Muscle Training, Electromyography Biofeedback and Placebo Neuromuscular Electrical Stimulation (n=37), and Group 2 which received Pelvic Floor Muscle Training, Electromyography Biofeedback, and Active Neuromuscular Electrical Stimulation (n=37). Treatment was for nine weeks with outcome measures recorded at weeks 0, 9, 16 and 24. The Primary Outcome Measure was the number of leakage episodes. Within group analysis was by Paired Samples t-test. Group differences were analysed using Repeated Measures Analysis of Variance and Post-hoc tests were used to determine the significance of differences between Groups at each time point. RESULTS: The mean number of incontinence episodes were reduced in Group 2 by 85% (p=0.001) whereas in Group 1 a lesser reduction of 47% (p=0.001) was observed. However, there was a statistically superior benefit in Group 2 when compared to Group 1 (p=0.0028). This superior benefit was evident in all other outcome measures. CONCLUSIONS: The addition of Active Neuromuscular Electrical Stimulation to a programme of Pelvic Floor Muscle Training and Electromyography Biofeedback should be considered as a first-line option in alleviating some of the symptoms of lower urinary tract dysfunction associated with multiple sclerosis.

Assessment of 25-hydroxyvitamin D and 1,25-dihydroxyvitamin D3 concentrations in male and female multiple sclerosis patients and control volunteers.

Populations with insufficient ultraviolet exposure and who consume diets low in vitamin D have low vitamin D status (plasma 25-hydroxyvitamin D (25(OH)D) concentrations) and a reported higher incidence of multiple sclerosis (MS). The active form of vitamin D, 1,25-dihydroxyvitamin D3 (1,25(OH)2D3), is an effective anti-inflammatory molecule. No research to date has assessed 1,25(OH)2D3 concentrations in individuals with MS. In this study, plasma concentrations of 25(OH)D, 1,25(OH)2D3 and parathyroid hormone (PTH) were measured in 29 individuals with MS and 22 age- and sex-matched control volunteers. There were no significant differences in plasma PTH, 25(OH)D and 1,25(OH)2D3 concentrations between individuals with MS and control volunteers. Women with MS had significantly higher 25(OH)D and 1,25(OH)2D3 concentrations than men with MS (79.1+/-45.4 versus 50.2+/-15.3 nmol/L, P=0.019 and 103.8+/-36.8 versus 70.4+/-28.7 pmol/L, P=0.019, respectively). There was a significant positive correlation between 25(OH)D and 1,25(OH)2D3 concentrations in all subjects (r=0.564, P=0.000), but secondary analysis revealed that the correlation was driven by women with MS (r=0.677, P=0.001). Significant sex differences in vitamin D metabolism were observed and were most marked in individuals with MS, suggesting that vitamin D requirements may differ between the sexes, as well as by underlying disease state.

Psychosocial interventions in people with multiple sclerosis: a review.

BACKGROUND: Upon diagnosis individuals with Multiple Sclerosis (MS) must cope with both day to day and disease-related stressors in addition to unpredictable, fluctuating and confusing symptoms. Furthermore, disease progression may interfere with employment, family life, relationships and social activities. Psychosocial interventions aim to help individuals manage these psychological, social and emotional challenges. However, there are no specific guidelines available regarding the most effective intervention content, format or delivery. Therefore, a review of the research that has utilised these interventions, specifically those which, by definition, aimed to improve quality of life (QoL) and/or well-being in people with MS, was considered essential in order to identify which aspects of these interventions may help alleviate the psychosocial challenges associated with MS. OBJECTIVES: To identify all randomised controlled trials (RCTs), quasi-experimental, cohort, case control and case series studies that have investigated psychosocial interventions in people with MS which aimed to improve QoL and/or well-being, to establish the methodological quality of such studies, and to determine the effectiveness of the interventions. SEARCH STRATEGY: Searches were carried out using computerised databases with predefined search terms; this was supplemented by manual searches of reference lists of all retrieved articles. Relevant journals were also hand searched. SELECTION CRITERIA: Studies written in English and published before January 2006, investigating the effectiveness of psychosocial interventions on QoL and/or well-being in people with MS, were eligible for inclusion. DATA COLLECTION AND ANALYSIS: Methodological quality was independently assessed by two reviewers using the Downs and Black quality scoring checklist. The qualitative and quantitative characteristics of studies were extracted using a data extraction sheet. MAIN RESULTS: Thirty-three studies fulfilled the inclusion criteria; however, interventions varied widely in content, delivery and duration. Furthermore, failure to report full methodological details, as well as weaknesses in study design, reduced the strength of inferences that could be drawn from these studies. These notwithstanding, there were three studies of sufficient quality to provide some evidence regarding the value of education/information, goal setting, homework assignments, exercise, discussion forums and multidisciplinary team support. Thus, this review has identified the potential benefit of the aforementioned activities in the psychosocial management of this population. However, further well designed clinical trials are warranted to determine, definitively, the effectiveness, or otherwise, of these components.

Comparison of pelvic floor muscle training, electromyography biofeedback, and neuromuscular electrical stimulation for bladder dysfunction in people with multiple sclerosis: a randomized pilot study.

AIM: Bladder dysfunction affects up to 90% of the multiple sclerosis (MS) population. Interventions such as Pelvic Floor Training and Advice (PFTA), Electromyography (EMG) Biofeedback, and Neuromuscular Electrical Stimulation (NMES) have received limited research attention within this population. This study aimed to determine the effectiveness of a combined programme of PFTA, EMG Biofeedback, and NMES for bladder dysfunction in MS. METHODS: Females (n = 30) who fulfilled strict inclusion/exclusion criteria were recruited. Outcome measures (weeks 0, 9, 16, and 24) included: 3-day Voiding Diary; 24 hr Pad-Test; Uroflowmetry; Pelvic Floor Muscle Assessment; Incontinence Impact Questionnaire (IIQ); Urogenital Distress Inventory (UDI); King's Health Questionnaire (KHQ), and the Multiple Sclerosis Quality of Life-54 Instrument (MSQoL-54). Following baseline (week 0) assessment, participants were randomly allocated, under double blind conditions, to one of the three groups: Group 1 (PFTA); Group 2 (PFTA and EMG Biofeedback); and Group 3 (PFTA, EMG Biofeedback, and NMES). Treatment was for 9 weeks. RESULTS: Baseline severity (measured by number of leaks and pad weight) showed some variation between groups, although not statistically significant (P > 0.05); with the caveat that this baseline imbalance makes interpretation difficult, a picture emerges that at week 9, Group 3 demonstrated superior benefit as measured by the number of leaks and pad test than Group 2, with Group 1 showing less improvement when compared to week 0; this was statistically significant between Groups 1 and 3 for number of leaks (P = 0.014) and pad tests (P = 0.001), and Groups 1 and 2 for pad tests (P = 0.001). A similar pattern was evident for all other outcome measures. CONCLUSION: Results suggest that these treatments, used in combination, may reduce urinary symptoms in MS. Further research will establish the effectiveness of these interventions.

Measuring quality of life in multiple sclerosis: not as simple as it sounds.

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.

Measuring disability in multiple sclerosis: is the Community Dependency Index an improvement on the Barthel Index?

The Community Dependency Index (CDI) was developed due to concerns that the Barthel Index (BI) was limited as a measure of physical function in community settings. However, no studies have compared the two rating scales within multiple sclerosis (MS). The aim of this study was to determine whether, in a community-based sample of people with MS, the CDI is a better measure than the BI. BI and CDI data were collected from 90 people with MS. Four measurement properties were compared: scaling assumptions (item mean scores, corrected item-total correlations), acceptability (score distributions, floor/ceiling effects), reliability (Cronbach's alpha) and validity (concurrent, discriminant, group differences, relative validity). Both scales satisfied recommended criteria for scaling assumptions (indicating it was legitimate to report a summed score) and internal consistency reliability (alpha > 0.85). The scales were highly correlated (r = 0.96), indicating they measured the same construct. Both scales demonstrated good group differences validity, but the BI was marginally superior. Notable ceiling effects (BI > CDI) were demonstrated for both scales, particularly in those less disabled. This study sample had relatively minor levels of disability, with over 70% still being independently mobile. In this sample of people with MS, the measurement properties of the BI and CDI examined were very similar, suggesting the CDI does not appear to have achieved its goal of better measurement.

Structure data entry using graphical input: recording symptoms for multiple sclerosis.

Structured Data Entry provides flexible and efficient input to the computer-based patient record. We have utilized the SDE approach to build a prototype interface for recording common symptoms associated with Multiple Sclerosis (MS). The software provides both graphical input and output, to facilitate efficient data entry and monitoring of data. Graphical input is transformed to textual information, which is stored in a database in a hierarchical tree structure. Pain management in MS may be achieved by careful monitoring of the symptom in response to treatment. Pain location is selected on a body image and severity and other attributes represented using a graphical visual analog scale, leading to more convenient input and a less ambiguous coding than is achievable with narrative text alone. This approach could provide an objective means of monitoring the progress of the disease and management of the symptoms. The intuitive interface may also facilitate self-monitoring.

A pilot investigation of the hypoalgesic effects of transcutaneous electrical nerve stimulation upon low back pain in people with multiple sclerosis.

OBJECTIVE: To investigate the hypoalgesic effects of transcutaneous electrical nerve stimulation (TENS) upon low back pain (LBP) in people with multiple sclerosis (MS). DESIGN: A randomized double-blind placebo controlled clinical pilot study. SUBJECTS AND SETTING: Fifteen people with MS were recruited and randomly allocated to one of the following groups under double blind conditions (n = 5 per group): TENS 1 (4 Hz, 200 micros), TENS 2 (110 Hz, 200 micros), placebo TENS. INTERVENTIONS: Treatment was applied for 45 minutes three times a week for six weeks with a four-week follow-up. OUTCOME MEASURES: The following outcome measures were taken at weeks 1, 6, and 10: visual analogue scale (VAS) (for current LBP, right leg pain, left leg pain); Leeds Multiple Sclerosis Quality of Life Questionnaire; Roland Morris Disability Questionnaire; Short Form-36 (SF-36) Version 1; and the McGill Pain Questionnaire (MPQ). VAS for current LBP, right and left leg pain were also taken before and after treatment, and once a week during the follow-up period. RESULTS: Analysis showed no statistically significant effects for any of the data. However, both active treatment groups showed a trend of improvement in the majority of the outcome measures. CONCLUSION: Active TENS was more effective than placebo TENS in decreasing VAS scores following each treatment although results were not statistically significant. Further work in this area is warranted and should include a larger number of participants in the form of a randomized controlled clinical trial to determine the efficacy of this modality.