Psychometric Validation of a Simplified Version of the Multiple Sclerosis Self-Management Scale

2021 ◽  
Vol 35 (3) ◽  
pp. 158-167
Author(s):  
Stuart Rumrill ◽  
Jia-Rung Wu ◽  
Kanako Iwanaga ◽  
Beatrice Lee ◽  
Fong Chan ◽  
...  

PurposeThe purpose of this study was to evaluate the measurement structure of a simplified version of the Multiple Sclerosis Self-Management Scale (MSSMS) in a sample of 256 individuals with multiple sclerosis (MS).MethodsExploratory factor analysis was utilized to uncover meaningful and interpretable factors.ResultsThe study yielded three factors as both meaningful and interpretable (medication compliance, MS knowledge, and health maintenance behavior). These factors are reliable and correlated with functional disability and community participation in the theoretically expected directions.ConclusionResults show the MSSMS to be a promising rehabilitation assessment tool for individuals with MS and rehabilitation counselors to evaluate self-management support needs in the interview, assessment, and rehabilitation planning protocols.

2017 ◽  
Vol 61 (3) ◽  
pp. 187-191 ◽  
Author(s):  
Beatrice Lee ◽  
Kanako Iwanaga ◽  
Joseph Pfaller ◽  
Fong Chan ◽  
Chungyi Chiu ◽  
...  

The main objective of this study was to evaluate the measurement structure of the Multiple Sclerosis Environmental Supports Scale (MSESS) with 248 individuals with multiple sclerosis (MS). Exploratory factor analysis yielded three reliable factors (health and mental health services; rehabilitation, social, and support services; and independent living supports). The MSESS appears to be a promising rehabilitation assessment tool for individuals with MS, one that can be used by rehabilitation counselors to evaluate environmental support factors in their interview, assessment, and rehabilitation planning protocols.


2021 ◽  
pp. 003435522110638
Author(s):  
Kanako Iwanaga ◽  
Xiangli Chen ◽  
Jia-Rung Wu ◽  
Beatrice Lee ◽  
Brett Deppert ◽  
...  

Increasing community participation can reduce the risk for functional disabilities; participation is influenced by person and environment contextual factors. Development and validation of a brief community participation assessment can advance and support evidence-based assessment in clinical rehabilitation counseling practice. It will be an invaluable rehabilitation and public health surveillance tool that can be used to gauge the health conditions and participation of people with disabilities. The current study evaluated and validated the Wisconsin Community Participation Scale (WCPS) in 982 individuals with chronic health conditions and disabilities. Participants indicated five most meaningful life roles: (a) being able to get around with or without help, (b) live independently with or without help, (c) live a healthy lifestyle, (d) work, and (e) leisure and recreation activities. The WCPS scores were positively associated with physical health, mental health, and life satisfaction and negatively related to functional disability in the theoretically expected directions. The WCPS can help rehabilitation counselors assess their clients’ current level of participation in meaningful life roles that are important to them. Rehabilitation counselors can use the WCPS assessment data to guide treatment planning and empower clients to build confidence and self-efficacy to participate in personally meaningful activities in the community.


2008 ◽  
Vol 14 (1) ◽  
pp. 66 ◽  
Author(s):  
Malcolm W. Battersby ◽  
Jackie Ah Kit ◽  
Colleen Prideaux ◽  
Peter W. Harvey ◽  
James P. Collins ◽  
...  

A pilot program for Aboriginal people with diabetes on Eyre Peninsula, South Australia, aimed to test the acceptability and impact of using the Flinders model of self-management care planing to improve patient self-management. A community development approach was used to conduct a twelve-month demonstration project. Aboriginal health workers (AHWs) conducted patient-centred, self-management assessment and care planning. Impacts were measured by patient-completed diabetes self-management assessment tool, goal achievement, quality of life and clinical measures at baseline and 12 months. Impact and acceptability were also assessed by semi-structured interviews and focus groups of AHWs. Sixty Aboriginal people with type 2 diabetes stated their main problems as family and social dysfunction, access to services, nutrition and exercise. Problems improved by 12% and goals by 26%, while quality of life scores showed no significant change. Self-management scores improved in five of six domains. Mean HbA1c reduced from 8.74-8.09 and mean blood pressure was unchanged. AHWs found the process acceptable and appropriate for them and their patients. It was concluded that a diabetes self-management program provided by AHWs is acceptable, improves self-management and is seen to be useful by Aboriginal communities. Barriers include lack of preventative health services, social problems and time pressure on staff. Enablers include community concern regarding the prevalence and mortality associated with diabetes.


2021 ◽  
Author(s):  
Andreas Andreou ◽  
Amar Dhand ◽  
Ivaylo Vassilev ◽  
Chris J Griffiths ◽  
Pietro Panzarasa ◽  
...  

BACKGROUND Individuals' social network and social support are fundamental determinants of self-management and self-efficacy. OBJECTIVE To identify how online and offline social networks play a role in health management for patients with chronic respiratory conditions. To explore the role of support from online peers in patients’ self-management, and understand the barriers and potential benefits to digital social interventions. METHODS We recruited participants from a hospital-run singing group to a workshop in London, UK, and adapted PERSNET, a quantitative social network assessment tool on a secure open-source web platform (REDCap), to generate social maps of online and offline individuals involved in managing participants’ chronic respiratory conditions. The second workshop was replaced by telephone interviews due to COVID-19 lockdown. We analyzed the transcripts using thematic analysis. RESULTS Seven participants (2M, 5F), with an age range of 64 to 81, produced network maps that comprised between 5 and 10 individuals, including family members, healthcare professionals, colleagues, activity groups, offline and online friends, and peers. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative/complementary sources of information. Participants in the latter type of network tended to communicate more openly about their illness, shared the impact their illness had on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. During the COVID-19 lockdown, additional themes emerged, including the need to develop the ability to switch from offline to online communication. Participants described potential benefits of expanding their network to include online peers, as source of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves/immediate family were reported as barriers to engage with online peer support. CONCLUSIONS The social network assessment tool proved feasible and acceptable. The visual maps facilitated reflections and enhanced participants’ understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support of people with asthma or COPD. These data show the value of using a social network tool as an intervention that can support self-management, and as a research tool that can help assess and understand network structure and engagement in the self-management support of people with chronic respiratory conditions. Patients’ preferences to share illness experiences with online peers, and the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of people with chronic illnesses to understand whether willingness to engage with online peers can change over time. CLINICALTRIAL n/a


2020 ◽  
Vol 22 (1) ◽  
pp. 37-42
Author(s):  
Sajjad Saadat ◽  
Mohammad Bagher Kajbaf ◽  
Mehrdad Kalantari ◽  
Mozaffar Hosseininezhad

Abstract Background: Self-management is the most important component in the treatment of chronic diseases, including multiple sclerosis (MS). The Bishop and Frain Multiple Sclerosis Self-Management Scale–Revised (MSSM-R) is one of the valid tools available for self-management assessment. The purpose of this study was to evaluate the psychometric properties of the MSSM-R in Iranian people with MS. Methods: This cross-sectional study was conducted in 2018 in the 1600 people with MS in Guilan Province, Iran. In this study, 250 people were selected by convenience sampling. The reliability of the Persian version of this scale was examined by internal consistency and test-retest methods, and validity evidence was evaluated using confirmatory factor analysis. Results: The MSSM-R had acceptable face and content validity. Confirmatory factor analysis results showed that 24 items on this scale have factor loadings in five subscales. Other results showed the internal consistency, as measured by Cronbach α and test-retest reliability, for the MSSM-R overall (α = 0.85, r = 0.77) and for the following subscales: Healthcare Provider Relationship and Communication (α = 0.83, r = 0.70), Treatment Adherence/Barriers (α = 0.70, r = 0.71), Social/Family Support (α = 0.79, r = 0.85), MS Knowledge and Information (α = 0.89, r = 0.72), and Health Maintenance Behavior (α = 0.77, r = 0.75). Conclusions: This study provides evidence of the validity and reliability of the MSSM-R. To further ensure its psychometric properties, additional studies with this scale are suggested.


2018 ◽  
Vol 6 (1) ◽  
pp. 1-154 ◽  
Author(s):  
David G Thompson ◽  
Sarah O’Brien ◽  
Anne Kennedy ◽  
Anne Rogers ◽  
Peter Whorwell ◽  
...  

BackgroundChronic gastrointestinal disorders are major burdens in primary care. Although there is some evidence that enhancing self-management can improve outcomes, it is not known if such models of care can be implemented at scale in routine NHS settings and whether or not it is possible to develop effective risk assessment procedures to identify patients who are likely to become chronically ill.ObjectivesWhat is the clinical effectiveness and cost-effectiveness of an intervention to enhance self-management support for patients with chronic conditions when translated from research settings into routine care? What are the barriers and facilitators that affect the implementation of an intervention to enhance self-management support among patients, clinicians and organisations? Is it possible to develop methods to identify patients at risk of long-term problems with functional gastrointestinal disorders in primary care? Data sources included professional and patient interviews, patient self-report measures and data on service utilisation.DesignA pragmatic, two-arm, practice-level cluster Phase IV randomised controlled trial evaluating outcomes and costs associated with the intervention, with associated process evaluation using interviews and other methods. Four studies around identification and risk assessment: (1) a general practitioner (GP) database study to describe how clinicians in primary care record consultations with patients who experience functional lower gastrointestinal symptoms; (2) a validation of a risk assessment tool; (3) a qualitative study to explore GPs’ views and experiences; and (4) a second GP database study to investigate patient profiles in irritable bowel syndrome, inflammatory bowel disease and abdominal pain.SettingSalford, UK.ParticipantsPeople with long-term conditions and professionals in primary care.InterventionsA practice-level intervention to train practitioners to assess patient self-management capabilities and involve them in a choice of self-management options.Main outcome measuresPatient self-management, care experience and quality of life, health-care utilisation and costs.ResultsNo statistically significant differences were found between patients attending the trained practices and those attending control practices on any of the primary or secondary outcomes. The intervention had little impact on either costs or effects within the time period of the trial. In the practices, self-management tools failed to be normalised in routine care. Full assessment of the predictive tool was not possible because of variable case definitions used in practices. There was a lack of perceived clinical benefit among GPs.LimitationsThe intervention was not implemented fully in practice. Assessment of the risk assessment tool faced barriers in terms of the quality of codting in GP databases and poor recruitment of patients.ConclusionsThe Whole system Informing Self-management Engagement self-management (WISE) model did not add value to existing care for any of the long-term conditions studied.Future workThe active components required for effective self-management support need further study. The results highlight the challenge of delivering improvements to quality of care for long-term conditions. There is a need to develop interventions that are feasible to deliver at scale, yet demonstrably clinically effective and cost-effective. This may have implications for the piloting of interventions and linking implementation more clearly to local commissioning strategies.Trial registrationCurrent Controlled Trial ISRCTN90940049.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 6, No. 1. See the NIHR Journals Library website for further project information.


2016 ◽  
Vol 72 (6) ◽  
pp. 1381-1395 ◽  
Author(s):  
Veerle Duprez ◽  
Susanne M. Van Hooft ◽  
Jolanda Dwarswaard ◽  
AnneLoes van Staa ◽  
Ann Van Hecke ◽  
...  

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Sónia F. Bernardes ◽  
Marta Matos ◽  
Susana Mourão ◽  
Christin-Melanie Vauclair

Abstract Objectives Breakthrough cancer pain (BTcP) is a transient exacerbation of pain that occurs over persistent, stable, and adequately controlled cancer background pain. It is prevalent and bears severe consequences to patients’ quality-of-life. The effective management of BTcP depends on fast and reliable (re)assessment. The Breakthrough pain Assessment Tool (BAT) is one of the most concise and reliable self-report instruments adapted to clinical contexts so far, showing good psychometric qualities in the United Kingdom, the Netherlands, and South Korea. As to promote the effective management of BTcP in Portuguese-speaking communities this study, first aimed to culturally adapt and validate the Portuguese version of the BAT (BAT-Pt). Second, and most importantly, it sought to provide novel evidence on its criterion validity by investigating its association with measures of psychological distress, which has not been yet investigated. Methods The BAT was translated into European Portuguese, using the back-translation method, and culturally adapted. Its psychometric properties (factor structure, internal consistency, construct and criterion validity) were analyzed in a cross-sectional multicenter study, with a sample of 65 cancer patients (49.2% women) recruited from eight hospitals in mainland Portugal (a priori power analysis determined a minimum sample of 50). Health professionals collected patients’ clinical information, assessed their functional disability (ECOG Performance Status) and the adequacy of pain control. In addition to the Portuguese version of the BAT (BAT_Pt), patients completed the Portuguese versions of the Brief Pain Inventory, the Hospital Anxiety and Depression Scale, a Distress Thermometer and answered questions about the adequacy of pain control. Results The BAT-Pt was very well accepted by experts and patients. As hypothesized, a Principal Axis Factor Analysis revealed two underlying factors accounting for 55.2% of the variance: (1) Pain Severity and Impact of BTcP and (2) Duration of BTcP and Medication Inefficacy. Two items (on episode frequency and medication efficacy) were analyzed separately given their lower/cross loadings. The BAT-Pt showed good internal consistency overall (α=0.79) and for each sub-scale, namely, Pain Severity and Impact of BTcP (n=5 items; α=0.86) and Duration of BTcP and Medication Inefficacy (n=2 items; rsb=0.62). The BAT-Pt showed good convergent validity, being moderately to strongly associated with overall pain severity and interference (0.46<r<0.77, p<0.001). It also showed good concurrent validity by being associated not only with physical outcomes – such as functional disability (r=0.40, p<0.001) and patient- and physician-determined adequacy of BTcP control (|0.25<rpb<0.63|, p s <0.05) – but also, with distress (0.33<r<0.46, p s <0.001), anxiety (0.28<r<0.44, p s <0.05) and depression (r=0.47, p<0.001). Conclusions The BAT-Pt is a reliable and valid measure of breakthrough pain in Portuguese cancer patients and it is strongly associated to physical and psychological outcomes. This study confirms and extends the psychometric validation of the BAT to a new cultural context, promoting its diffusion and use by researchers and clinicians in Portuguese-speaking communities. The BAT-Pt may be an invaluable tool for daily clinical practice by tapping multiple aspects of BTcP experiences that are associated to patients’ physical and psychological outcomes.


2019 ◽  
Vol 42 (2) ◽  
pp. 158-168
Author(s):  
Janie Houle ◽  
Stephanie Radziszewski ◽  
Préscilla Labelle ◽  
Simon Coulombe ◽  
Matthew Menear ◽  
...  

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