A randomised controlled trial of an online fatigue self-management group intervention for adults with chronic neurological conditions

Background: Fatigue is one of the most common symptoms of neurological conditions. Although the literature suggests different approaches to treatment of this pervasive symptom, there is not a single, agreed comprehensive and well-supported approach to manage fatigue. There is strong evidence (Mathiowetz, Finlayson, Matuska, Chen, & Luo, 2005; Mathiowetz, Matuska, Finlayson, Luo, & Chen, 2007) that the face-to-face fatigue self-management program designed by Packer et al (1995) is effective in improving fatigue in people with MS. However, in Australia and many other developed and developing countries this program is not available for those people who have difficulty accessing services due to geographical location, transportation problems, work commitments or who lack confidence to participate in face-to-face programs. Equity of access is an important issue not only for this particular program but also for any self-management program in Australia (and internationally) which has a large rural and remote population. Evidence highlights the need for self-management programs to be delivered in different formats to ensure equity of access. One of the suggested ways is delivering the programs online. There is sufficient evidence that people with a disability have access to the internet. Thus, this project was designed to refine and further develop a pre-designed online fatigue self-management (online FSM) program and to evaluate it in a sample of adults with chronic neurological condition through a randomised controlled trial (RCT). Further, the study intended to explore who and how people with fatigue improve in their health outcomes.Methodology and Results: The aims of the project were fulfilled through four studies: 1) a pilot study; 2) a randomised controlled trial of the online FSM program; 3) a comparison with the face-to-face FSM program; and 4) exploration of predictors of improvement.During the pilot study, three pilot tests were conducted for the purposes of formative evaluation and to make necessary changes to improve the program. During the third pilot test, the effectiveness of the online FSM was also tested using a pre-test post-test design on a sample of individuals with multiple sclerosis, Parkinson’s disease or post-polio syndrome. The pilot study resulted in a standardised 7-week online FSM program mimicking its face-to-face version. Participants were offered fatigue self-management skills through structured activities, sharing information and experiences, expressing their ideas or feelings and offering advice and support to one another. The participants in the third pilot study improved significantly on the Fatigue Impact Scale (p<.05) and showed a trend toward significance shown on the Personal Wellbeing Index (p=.08).The RCT, the second study, included 95 participants who were randomised into one of three groups: an online FSM, an information-only FSM (info FSM) and a control group. The groups were compared at three time points (pre-test, post-test and at 3-months follow-up) on Fatigue Impact Scale, Activity Card Sort and Personal Wellbeing Index (FIS, ACS and PWI). Sores on Generalized Self-efficacy (GSE), Duke Social Support Index (SSI) and Depression, Anxiety and Stress Scale (DASS) were also used as covariates. The results showed that although both the online and information-only FSM groups improved over time on the FIS and ACS (p < .05), they were not significantly different from the control group or from each other at any time point. The low power in all analyses when comparing the groups revealed that a larger sample size is required to detect possible differences between the online FSM and control groups. Results of the secondary analysis on a combined group (online FSM group plus info FSM groups) showed that the online FSM and info FSM group complemented each other. The combined group showed significant differences when compared to the control group. This further suggests that the need for a larger sample size.The literature suggests incorporating face-to-face interventions as one of the experimental conditions when testing the effectiveness of an online program. Therefore, in the third study, a face-to-face group was used as a non-randomized comparison group. As the online FSM program was designed to provide service for people who do not have access to the face-to-face program, randomisation of the participants to four groups (face-to-face FSM, online FSM, info FSM and control groups) was not feasible; restricting the inclusion criteria to participants who had access to both the face-to-face and online programs would have excluded the very people for whom the program was designed. Thus, this study compared a sample of 20 participants in a face-to-face FSM program with each of the three other groups (online FSM, info FSM and control groups) using a nonequivalent pre-test post-test study. The findings showed that after controlling for the baseline data these participants had better scores on the FIS than the control group at post-test while these results were not seen in comparison to the online and info FSM groups. The results of this study on the face-to-face FSM program in comparison with online FSM program suggest that the online and info FSM program were successfully mimicking its face-to-face version. Further, the differences in some outcome measures and some clinical and demographic characteristics clearly demonstrated that the participants with access to the face-to-face program were significantly different than those in the RCT study. The participants who volunteered for participation in the online FSM program had lower activity levels and higher fatigue levels than the participants who had access to the face-to-face program. It appears that the two versions of the program provide access to significantly different participants.The fourth study aimed to indicate predictors of improvement on the FIS, ACS and PWI. Regression analyses were performed to find whether baseline demographic, clinical characteristics and/or changes in clinical characteristics from pre-test to follow-up were predictors for positive health outcomes. In this study, 92 participants with complete data set (pre-test, post-test and follow-up) were included. In parallel to the results emerging in systematic reviews (Nolte, Elsworth, Sinclair, & Osborne, 2007; S. Taylor, 2005; Warsi, Wang, LaValley, Avorn, & Solomon, 2004), younger people with more severe baseline scores appear to be more likely to make clinically significant improvements in their health outcomes. Improvement in mood and selfefficacy of people with fatigue were found to be predictors of better results for fatigue. Another interesting finding of this study was that improvement in selfefficacy and stress helps people with neurological conditions to improve in their fatigue regardless of their activity level at baseline.Conclusion: While fatigue is a common problem for people with fatigue secondary to neurological conditions, this online FSM program is the first of its kind to be implemented. The primary purpose of the fatigue self-management program is to help the participants improve their everyday performance and quality of life by incorporating ‘energy conservation techniques’ and self-management principles into their own life. Through the application of the fatigue self-management program, occupational therapists and other health professionals expect that the participants will learn the self-management skills, make corresponding behaviour changes and experience a reduction in the effect of fatigue on their lives. New knowledge gained from this study can further support the idea of providing other self-management programs online. The results of this study also add to the growing body of evidence emerging regarding how information technology may assist with improving health outcomes related to chronic conditions. Further, some predictors of improvement in health outcomes in this group of people were determined. The findings provide some evidence of the potential benefits of online fatigue self-management program for people with chronic neurological conditions. Online interventions like the online FSM program represent an important strategy for bridging the gap in service for those who can not participate in face-to-face programs

Community Integration for After Acquired Brain Injury: A Literature Review

Objectives: This paper reviews the current literature on acquired brain injury (ABI) with a focus on ABI burden, importance of community integration, and community integration definitions suggested by the literature. Method: Literature review Results: Acquired brain injury (ABI) is referred to a diverse range of disabilities resulted of injury in different parts of the brain. People with ABI are in face with different aspects of individual, family and social concerns or burdens which directly affect their lives. Although community integration as an ultimate aim of rehabilitation is optimal approach to overcome their consequences, a comprehensive concept of it is always challenging. There are several different definitions for community integration including various aspects of life with ABI. Conclusion: Living with brain injury constitutes an expanded experience of community isolation and consequences which reduces participation and social integration. Community integration is aimed to condense concerns of people with ABI with returning them to community

Community Integration for After Acquired Brain Injury: A Literature Review

This paper reviews the current literature on acquired brain injury (ABI) with a focus on ABI burden, importance of community integration, and community integration definitions suggested by the literature. Acquired brain injury (ABI) is referred to a diverse range of disabilities resulted of injury in different parts of the brain. People with ABI are in face with different aspects of individual, family and social concerns or burdens which directly affect their lives. Although community integration as an ultimate aim of rehabilitation is optimal approach to overcome their consequences, a comprehensive concept of it is always challenging. There are several different definitions for community integration including various aspects of life with ABI. Living with brain injury constitutes an expanded experience of community isolation and consequences which reduces participation and social integration. Community integration is aimed to condense concerns of people with ABI with returning them to community

Effects of Transfer Training on Musculoskeletal Pain in the Caregiver of a Stroke Patient: a Case Report

The purpose of this case report was to evaluate the effectiveness of training of transfer techniques to a caregiver of a person who had suffered a stroke in decreasing musculoskeletal pain, depression and anxiety. This study adopted a single subject research design to evaluate the effectiveness of transfer-techniques training on musculoskeletal pain, depression, and anxiety in a 25-year-old female caregiver of a person with a stroke. The study was completed in four phases, including a baseline evaluation (1st and 3rd week), training (3rd, 5th and 7th week), post-training (9th week), and follow-up evaluation (11th week). During the 1st week, demographic and descriptive information (such as age, time since diagnosis, cognition and independence of daily living) were collected from the stroke patient. Also, pain severity, anxiety and depression levels of the caregiver were evaluated. In weeks 3, 5 and 7, transfer training was undertaken. The patient was involved in the training with the caregiver under the supervision of an occupational therapist in their own home. The effectiveness of the training with regard to musculoskeletal pain and depression and anxiety levels of the caregiver was evaluated in the 5th, 9th and 11th weeks. The data were analyzed using a visual analysis of trends and levels. The results showed a decrease in pain severity, anxiety and depression during training and post-training. The changes continued during the follow-up stage. This study suggests promising results for the effectiveness of the transfer-techniques training and justifies further clinical trials. A larger trial is required to confirm the effectiveness of transfer training in improving pain management in caregivers of stroke survivors

Fatigue in Progressive Neurological Conditions: A literature Review

This paper reviews the current literature examining the pervasive symptom of fatigue experienced in three of the most common degenerative neurological conditions: multiple sclerosis (MS), Parkinson&apos;s disease (PD) and post-polio syndrome (PPS). The existing literature can be considered under four headings; definition and prevalence, type, cause, impact of fatigue. Fatigue is a common symptom in degenerative conditions and has physical, cognitive and psychosocial manifestations. Although the causes of fatigue seem to differ between conditions, its pattern, with few exceptions, is very similar regardless of diagnosis. The literature consistently shows that the impact of fatigue on the person&apos;s physical and mental performance considerably increasing the risk of unemployment and reduced quality of life. Fatigue is one of the most disabling symptoms in degenerative neurological conditions. With few pharmacological solutions, non-pharmacological solutions for fatigue management should be considered when determining rehabilitation interventions for this group of people

“Waiting for Science to Catch up with Practice”: an examination of 10-year YouTube trends in discussions of chronic cerebral spinal venous insufficiency treatment for multiple sclerosis

Objective: The objective of this longitudinal study examined, first, whether people with multiple sclerosis who previously advocated for angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI) through YouTube continued reporting benefits. Second, it examined a new cohort reporting on CCSVI treatment, and third, whether perspectives have changed. Method: YouTube videos from August 2011 to January 2019 related to CCSVI were retrieved. Once retrieved, all videos were compiled, classified and analyzed. Categorical data were reported and a pre-determined code-book was used to code videos. Data from the videos were extracted and analyzed using discourse analysis. Results: 1293 videos related to CCSVI were uploaded by 54 people with multiple sclerosis who met the inclusion criteria. YouTube videos uploaded by people with multiple sclerosis have shifted in volume and message. The initial surge in interest in CCSVI treatment has diminished, but there still exists strong advocates for its use. There appears to be an inconsistency between positive results, actual improvements in symptoms, and the overall messages reported. Very little long-term data was available as the procedure is relatively new. Conclusion: Practitioners may be faced with pressure to provide unproven treatments in the future and should be understanding but evidence-driven when supporting multiple sclerosis therapies.This research is funded in part by a National MS Society Post-doctoral Fellowship Award No. MB 0016.2020-03-2

Effectiveness of online and face-to-face fatigue self-management programmes for adults with neurological conditions

Purpose: To evaluate effectiveness of a face-to-face and an online fatigue self-management programme and to compare these to two control groups (information-only and no-intervention) in a sample of adults (n=115) with neurological conditions reporting extreme fatigue. Method: Non-equivalent pre-test post-test control group design using the Fatigue Impact Scale, Personal Wellbeing Index and Activity Card Sort as primary outcome measures. Results: Participants in the two intervention groups and the information-only group showed clinically significant improvements in fatigue over time (p<0.05). When compared to the no-intervention group, face-to-face participants showed significantly greater improvement in overall and cognitive fatigue, while participants in the online group showed significant improvement in self-efficacy and stress. Conclusion: Participation in either the online or face-to-face programme appears to result in improved self-management, however, with different potency depending on outcomes. The improvement in the online information only group further complicates the understanding of the results. With few other comparisons of online and face-to-face self-management protocols available, further research is needed to understand differential impacts which may be related to the delivery format, the rural versus urban split of participants or other unknown factors