Developing a wellness program for people with multiple sclerosis: description and initial results.
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ABSTRACT:
SUBMITTER: Hart DL
PROVIDER: S-EPMC3882965 | biostudies-other | 2011
REPOSITORIES: biostudies-other
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Project description:Multiple sclerosis (MS) is a demyelinating and neurodegenerative disorder of the central nervous system, for which disease modifying therapies (DMTs) are the mainstay treatment approach to reduce inflammatory disease activity and slow worsening disability. In addition to conventional pharmacologic therapy, there is growing interest in the use of lifestyle strategies to support wellness and mitigate disease-related complications in MS. This interest stems from a growing appreciation of the role of certain comorbidities and lifestyle factors on disease activity, disability, mortality, and overall quality of life. While the current literature is not conclusive, there is evidence to suggest a potential role for vitamin D supplementation, tobacco smoking cessation, routine exercise, a plant-based, anti-inflammatory diet, and maintenance of emotional well-being as adjunct therapies to DMTs. In addition to DMTs, lifestyle strategies should be emphasized as part of a management plan focused on overall health and well-being.
| S-EPMC5722768 | biostudies-literature
Project description:The Transition to Wellness Program is an occupational therapy (OT) based program that was developed in response to the COVID-19 pandemic. For OT students, fieldwork is a required element of their training. In March 2020, these were being halted due to lockdowns and the risk to students in healthcare settings. Facing significant delays to graduation for 60 students, including some unable to be placed into healthcare settings due to underlying conditions, the development of a telehealth program was conceived to address this, while still meeting the accreditation clinical/health/wellness standards for OT fieldwork. A group of students, with faculty oversight, developed the theoretical basis, tools, policies and procedures for the program. An incremental launch allowed testing and refinement of the program to meet the educational needs of the students and the wellness needs of the clients. At its launch, the program supported 10 of that cohorts' 60 students to continue to meet the required academic standards and progress through their fieldwork towards graduation. Each student got to experience the "telehealth" model in providing OT wellness interventions to individuals in the local community. Future work will focus on continuing to broaden the reach of the program and measure the outcomes.
| S-EPMC9343972 | biostudies-literature
Project description:BackgroundShared medical appointments (SMAs) are group medical visits combining medical care and patient education. We examined the impact of a wellness-focused pilot SMA in a large multiple sclerosis (MS) clinic.MethodsWe reviewed data on all patients who participated in the SMA from January 2016 through June 2019. The following data were collected 12 months pre/post SMA visits: demographics, body mass index, patient-reported outcomes, and health care utilization. Data were compared using the Wilcoxon rank sum test.ResultsFifty adult patients (mean ± SD age, 50.1 ± 12.3 years) attended at least one MS wellness SMA. Most patients had private insurance (50%), and 26% had Medicaid coverage. The most common comorbidity was depression/anxiety (44%). Pre/post SMA outcomes showed a small but significant reduction in body mass index (30.2 ± 7.3 vs 28.8 ± 7.1, P = .03), and Patient Health Questionnaire-9 scores decreased from 7.3 ± 5.5 to 5.1 ± 5.6 (P = .001). The number of emergency department visits decreased from 13 to two (P = .0005), whereas follow-up visits increased with an attendees' primary care provider from 19 to 41 (P < .001), physical therapist from 15 to 27 (P = .004), and psychologist from six to 19 (P = .003).ConclusionsThis pilot MS wellness SMA was associated with improved physical and psychological outcomes. There was increased, lower-cost health care utilization with reduced acute, high-cost health care utilization, suggesting that SMAs may be a cost-effective and beneficial method in caring for patients with MS.
| S-EPMC8550485 | biostudies-literature
Project description:BackgroundMultiple sclerosis (MS) is a neurological disease of the central nervous system and is associated with many psychosocial symptoms that are difficult to manage including low mood, anxiety, fatigue and pain, as well as low health-related quality of life. Internet-based psychosocial interventions that use mindfulness-based approaches are gathering much attention in recent literature, particularly in the treatment of chronic illnesses. However, no large randomized controlled trials have been done examining the efficacy of such interventions for people with MS (PwMS).Methods/designThis study is a randomised controlled trial of an online mindfulness-based intervention (MBI) for PwMS. Participants will be randomised to receive either the MBI or offered the intervention after a waiting period. All participants will be assessed to determine whether they have a history of recurrent depressive disorder. The primary outcome will be severity of depression, according to the Centre of Epidemiology Depression Scale. Secondary outcomes will be anxiety severity, fatigue, pain and quality of life. Assessments will be conducted pre, post-treatment, at three and six-month follow-up. The online mindfulness-based program was developed in collaboration with end-users (n = 19 PwMS) who gave feedback about what would be feasible and acceptable, and the draft program was reviewed by both experts and patients.DiscussionMultiple sclerosis is the most common acquired chronic neurological disease amongst young adults and is associated with a range of symptoms that can be difficult to cope with. In face-to-face interventions, a MBI demonstrated the largest effect in a recent meta-analysis of psychological treatments for PwMS, but MBIs for PwMS have not been delivered online. Hence, this trial will confirm whether MBIs can be efficacious when delivered online. A range of symptoms are assessed as outcomes so that the nature of benefits associated with the online MBI can be ascertained.Trial registrationACTRN12618001260213 . Date of Registration: 25/07/2018.
| S-EPMC6567500 | biostudies-literature
Project description:People with multiple sclerosis (MS) are living longer so strategies to enhance long-term health are garnering more interest. We aimed to create a profile of ageing with MS in Canada by recruiting 1250 (5% of the Canadian population above 55?years with MS) participants and focusing data collection on health and lifestyle factors, disability, participation and quality of life to determine factors associated with healthy ageing.National multicentre postal survey.Recruitment from Canadian MS clinics, MS Society of Canada chapters and newspaper advertisements.People aged 55?years or older with MS symptoms more than 20?years.Validated outcome measures and custom-designed questions examining MS disease characteristics, living situation, disability, comorbid conditions, fatigue, health behaviours, mental health, social support, impact of MS and others.Of the 921 surveys, 743 were returned (80.7% response rate). Participants (mean age 64.6±6.2?years) reported living with MS symptoms for an average of 32.9±9.5?years and 28.6% were either wheelchair users or bedridden. There was only 5.4% missing data and 709 respondents provided optional qualitative information. According to data derived from the 2012 Canadian Community Health Survey of Canadians above 55?years of age, older people with MS from this survey sample are about eight times less likely to be employed full-time. Older people with MS were less likely to engage in regular physical activity (26.7%) compared with typical older Canadians (45.2%). However, they were more likely to abstain from alcohol and smoking.Despite barriers to participation, we were able to recruit and gather detailed responses (with good data quality) from a large proportion of older Canadians with MS. The data suggest that this sample of older people with MS is less likely to be employed, are less active and more disabled than other older Canadians.
| S-EPMC4120418 | biostudies-literature
Project description:IntroductionAn Australian case series study demonstrated the effectiveness of the REsilience and Activities for every DaY for people with multiple sclerosis (READY for MS), a resilience group training program based on Acceptance and Commitment Therapy, in improving quality of life in people with MS. This study aimed to evaluate the feasibility and acceptability of the Italian READY for MS program, and to preliminary assess its efficacy when compared to an active control intervention (group relaxation).MethodsSingle-blind phase II randomized controlled trial (RCT) and nested qualitative study (ISRCTN registration number: 38971970). Health-related quality of life (primary study outcome), mood, resilience, psychological flexibility and its protective factors were measured at baseline, after seven, 12 and 24 weeks. READY participants completed the purpose-built satisfaction questionnaire after 12 weeks. After trial completion, the control group also received READY. One-to-one participant interviews were conducted within three months of finishing the READY groups.ResultsFour intervention groups were conducted with 39 participants (20 READY, 19 relaxation). Two patients (READY) withdrew before beginning the intervention due to unexpected work commitments. Feasibility and acceptability of READY were good, with high participant engagement and satisfaction. No statistical effects of READY were detected vs relaxation. Thirty participants were interviewed (18 READY; 12 relaxation + READY). Content data analysis revealed seven overarching themes: "Attitudes towards participation"; "Perceptions of program composition"; "Program impacts on life domains"; "Program active elements"; "Program improvement trajectories"; "Program differences and similarities"; "Suggested READY improvements".ConclusionREADY was well accepted by MS patients with varied socio-demographic and clinical characteristics. Qualitative (but not quantitative) data provided evidence in favour of READY. Our findings will inform methodological and intervention refinements for the multi-centre RCT that will follow.
| S-EPMC7145197 | biostudies-literature
Project description:BACKGROUND:Adequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany. OBJECTIVE:We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge. METHODS:An online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. Inclusion criteria of participants were: (1) age ?18 years, (2) a diagnosis of relapsing-remitting MS (RRMS), (3) being in a decision making process for a disease modifying drug. RESULTS:Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) (mean age 38.6 years [range 18-67], 77% women, 7.8 years of disease duration) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (p < 0.001). Variables significantly associated with higher risk knowledge were higher education (p < 0.001), previous experience with disease modifying drugs (p = 0.001), correct answer to a medical data interpretation question (p < 0.001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (p = 0.001). CONCLUSION:MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS.
| S-EPMC6264873 | biostudies-literature
Project description:Patients with multiple sclerosis (MS) were vulnerable to the effects of physical inactivity during the COVID-19 pandemic. As patients returned to in-person visits, providers reported seeing increased weakness, balance issues, falls, worsening pain, and spasticity. Social isolation also contributed to increased stress, depression, and anxiety. This study explored whether attending virtual wellness programs was associated with improvements in standard quality of life questionnaire scores for patients with MS. The purposive convenience sample consisted of 43 patients in the treatment group and 28 in the control group. Patients in the treatment group attended 2 monthly programs for 6 months and completed a demographic questionnaire, the 36-Item Short Form Health Survey (SF-36), the Modified Fatigue Impact Scale, and the Medical Outcomes Study Pain Effects Scale (PES). Patients requested additional topics, resulting in 5 additional programs. The control group consisted of patients who chose not to attend the programs but agreed to complete the questionnaires. In comparing questionnaire responses (6 months minus baseline) among the participants in the treatment group, an association was found between higher meeting attendance and improvements in emotional well-being (P = .038), pain on the PES (P = .011), mindfulness on the SF-36 pain scale (P = .0472), and exercise on the PES (P = .0115). The results of this study suggest that a virtual wellness program may provide beneficial emotional support, physical exercise, and health promotion activities resulting in improved quality of life in people with MS. In addition, mindfulness and exercise programs may be beneficial in pain management.
| S-EPMC9749834 | biostudies-literature
Project description:IntroductionPeople with multiple sclerosis (PwMS) experience a range of physical, cognitive, and affective symptoms. Behavioral interventions targeting increased physical activity show promising support as low-cost methods to improve working memory, episodic memory, and processing speed in PwMS. In this randomized controlled trial, we will examine the efficacy of a pedometer-tracking intervention, designed to increase low-to-moderate levels of physical activity, for improving working memory in PwMS.Methods and analysisEighty-seven PwMS, between the ages of 30-59, have been recruited for the study. Seventy-five of the eligible and interested individuals were randomized to six-month health behavior monitoring groups: a Step-track group or a Water-track group (serving as the active control). Neuropsychological measures, assessing the primary outcome of the study, were administered at pre, midpoint, and post-intervention. Exploratory factor analysis of neuropsychological measures resulted in three factors: a working memory/processing speed factor, a visual episodic memory factor, and a verbal episodic memory factor. Changes in this latent measure of working memory/processing speed is the primary outcome of the current study. Functional MRI data will be analyzed to examine changes in the functional connectivity of the neural network supporting working memory.Ethics and disseminationThe institutional review board granted approval for the study and all participants provided written informed consent. The results of this study will provide support showing that step-tracking increases overall levels of physical activity, improves working memory and processing speed, and strengthens the neural circuitry that supports better cognition. Evidence from this study will thus offer promising support for the routine use of step-tracking devices to improve cognitive functioning in PwMS. Study results will be disseminated through peer-reviewed publications and presentations at scientific conferences.
| S-EPMC9529668 | biostudies-literature
Project description:BackgroundApproximately 56% of people with multiple sclerosis (MS) will fall in any 3-month period, with the potential for physical, psychological, and social consequences. Fall-prevention research for people with MS is in its infancy, with a timely need to develop theory-based interventions that reflect the complexity of falls. The clear articulation of the development of any complex intervention is paramount to its future evaluation, usability, and effectiveness. Our aim was to describe how the development of Better Balance, a complex multicomponent fall-prevention intervention for people with MS, was guided by the Medical Research Council framework for the development of complex interventions.MethodsSources of information included existing literature, original research, clinician interviews, and views of people with MS. These sources were synthesized and refined through an iterative process of intervention development involving researchers, clinicians, and people with MS.ResultsThe resulting intervention is outlined through a variety of key tasks supplementing the original Medical Research Council framework. Use of this framework resulted in a theoretically based and user-informed complex intervention designed to address the physiological, personal, and behavioral risk factors associated with falls in people with MS.ConclusionsThe articulation of the systematic process used to develop Better Balance will inform the future evaluation and usability of the intervention.
| S-EPMC8218582 | biostudies-literature