Item selection, scaling and construct validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) measurement tool in adults.

PURPOSE: To select and scale items for the seven domains of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and assess its construct validity. METHODS: Using an online survey, data on 100 potential items, and other variables for assessing construct validity, were collected from 1055 adults with one or more chronic health conditions. Based on a validated conceptual model, confirmatory factor analysis (CFA) and item response models (IRT) were used to select and scale potential items and assess the internal consistency and structural validity of the PRISM-CC. To further assess construct validity, hypothesis testing of known relationships was conducted using structural equation models. RESULTS: Of 100 potential items, 36 (4-8 per domain) were selected, providing excellent fit to our hypothesized correlated factors model and demonstrating internal consistency and structural validity of the PRISM-CC. Hypothesized associations between PRISM-CC domains and other measures and variables were confirmed, providing further evidence of construct validity. CONCLUSION: The PRISM-CC overcomes limitations of assessment tools currently available to measure patient self-management of chronic health conditions. This study provides strong evidence for the internal consistency and construct validity of the PRISM-CC as an instrument to assess patient-reported difficulty in self-managing different aspects of daily life with one or more chronic conditions. Further research is needed to assess its measurement equivalence across patient attributes, ability to measure clinically important change, and utility to inform self-management support.

Patient perspectives on primary care for multimorbidity: An integrative review.

INTRODUCTION: Improving healthcare for people with multiple chronic or ongoing conditions is receiving increased attention, particularly due to the growing number of people experiencing multimorbidity (MM) and concerns about the sustainability of the healthcare system. Primary care has been promoted as an important resource for supporting people with MM to live well with their conditions and to prevent unnecessary use of health care services. However, traditional primary care has been criticized for not centring the needs and preferences of people with MM themselves. Our aim was to conduct a review that centred on the perspective of people with MM in multiple ways, including having patient partners co-lead the design, conduct and reporting of findings, and focusing on literature that reported the perspective of people with MM, irrespective of it being experimental or nonexperimental. METHODS: We searched for published literature in CINAHL with Full Text (EBSCOhost) and MEDLINE All (Ovid). Findings from experimental and nonexperimental studies were integrated into collaboration with patient partners. RESULTS: Twenty-nine articles were included in the review. Findings are described in five categories: (1) Care that is tailored to my unique situation; (2) meaningful inclusion in the team; (3) a healthcare team that is ready and able to address my complex needs; (4) supportive relationships and (5) access when and where I need it. CONCLUSION: This review supports a reorientation of primary care systems to better reflect the experiences and perspectives of people with MM. This can be accomplished by involving patient partners in the design and evaluation of primary care services and incentivizing collaboration among health and social supports and services for people with MM. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were involved in the design and conduct of this review, and in the preparation of the manuscript. Their involvement is further elucidated in the manuscript text.

Prevalence of Prescribed Opioid Claims Among Persons With Traumatic Spinal Cord Injury in Ontario, Canada: A Population-Based Retrospective Cohort Study.

OBJECTIVES: To examine prescription opioid claims among individuals with traumatic spinal cord injury (SCI) and to identify factors associated with both chronic opioid and chronic high-dose opioid use. DESIGN: Retrospective cohort study using population-level administrative data. SETTING: Ontario, Canada. PARTICIPANTS: Individuals (N=1842) with traumatic SCI between April 1, 2004 and March 31, 2015. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Proportion of cohort with chronic opioid use (≥90d supply) and proportion with chronic high-dose opioid use (≥90d supply exceeding 90 mg morphine equivalent) between April 1, 2016 and March 31, 2017 (observation period). RESULTS: A total of 1842 individuals with traumatic SCI were identified (74% men), with a median age of 51 years (interquartile range [IQR], 34-64y) and median duration of injury of 6 years (IQR, 4-9y). During the observation period, 35% were dispensed at least 1 opioid and 19.8% received chronic opioids, 39% of whom received more than 90 mg daily (chronic high dose). The median daily morphine equivalent dose was 212 mg morphine equivalent (IQR, 135.5-345.3 mg) for chronic high-dose users. Significant risk factors for chronic opioid use were male sex; age between 40 and 60 years; lower income; multimorbidity; thoracic, lumbar, or sacral level of injury; and having a previous diagnosis of osteoarthritis. Risk factors for chronic high-dose opioid use were an extended time since injury, age between 40 and 50 years, and increasing comorbidity. CONCLUSIONS: A large proportion of individuals with traumatic SCI were dispensed an opioid in a recent 1-year period. A substantial proportion were dispensed more than 90 mg of morphine equivalents, which is the maximum recommended by the Canadian opioid guideline. Further research is needed to understand the risk factors associated with chronic, high-dose opioid use in this population.

Prevalence of prescribed opioid claims among persons with nontraumatic spinal cord dysfunction in Ontario, Canada: a population-based retrospective cohort study.

STUDY DESIGN: Cohort study. OBJECTIVE: To determine the prevalence and to identify predictors of prescription opioid use among persons with nontraumatic spinal cord dysfunction within 1 year after discharge from inpatient rehabilitation. SETTING: Ontario, Canada. METHODS: We conducted a retrospective cohort study using administrative data to determine predictors of receiving prescription opioids during the 1 year after discharge from inpatient rehabilitation among persons with nontraumatic spinal cord dysfunction between April 1, 2004 and March 31, 2015. We modeled the outcome using a Poisson multivariable regression and reported relative risks with 95% confidence intervals. RESULTS: We identified 3468 individuals with nontraumatic spinal cord dysfunction (50% male) with 67% who were aged ≥66. Over half of the cohort (60%) received opioids during the observation period. Older adults (≥66 years old) were significantly more likely to experience comorbidities (p < 0.05) but less likely to be dispensed opioids following rehabilitation discharge. Being female, previous opioid use before rehabilitation, experiencing lower continuity of care, increasing comorbidity level, low functional status, and having a previous diagnosis of osteoarthritis or mental illness were significant risk factors for receiving opioids after discharge, as shown in a multivariable analysis. Increasing length of rehabilitation stay and higher income were protective against opioid receipt after discharge. CONCLUSION: Many individuals with nontraumatic spinal cord dysfunction in Ontario are prescribed opioids after discharge from inpatient rehabilitation. This may be problematic due to the number of severe complications that may arise from opioid use and their use in this population warrants future research.

Prescription medications dispensed following a nontraumatic spinal cord dysfunction: a retrospective population-based study in Ontario, Canada.

STUDY DESIGN: Retrospective cohort study. OBJECTIVES: To examine the prevalence of polypharmacy for individuals with nontraumatic spinal cord dysfunction (NTSCD) following inpatient rehabilitation and to determine associated risk factors. SETTING: Ontario, Canada. METHODS: Administrative data housed at ICES, Toronto, Ontario were used. Between 2004 and 2015, we investigated prescription medications dispensed over a 1-year period for persons following an NTSCD-related inpatient rehabilitation admission. Descriptive and analytical statistics were conducted. Using a robust Poisson multivariable regression model, relative risks related to polypharmacy (ten or more drug classes) were calculated. Main independent variables were sex, age, income quintile, and continuity of care with outpatient physician visits. RESULTS: We identified 3468 persons with NTSCD during the observation window. The mean number of drug classes taken post-inpatient rehabilitation was 11.7 (SD = 6.0), with 4.0 different prescribers (SD = 2.5) and 1.8 unique pharmacies (SD = 1.0). Significant predictors for post-discharge polypharmacy were: being female, lower income, higher comorbidities prior to admission, lower Functional Independence Measure at discharge, previous number of medication classes dispensed in year prior to admission, and lower continuity of care with outpatient physician visits. The most common drugs dispensed post-inpatient rehabilitation were antihypertensives (70.0%), laxatives (61.6%), opioids (59.5%), and antibiotics (57.8%). CONCLUSION: Similar to previous research with traumatic spinal cord injury, our results indicate that polypharmacy is prevalent among persons with NTSCD. Additional research examining medication therapy management for NTSCD is suggested.

The Team Assessment of Self-Management Support (TASMS): A new approach to uncovering how teams support people with chronic conditions.

Canadian and other healthcare systems are adopting primary care models founded on multidisciplinary, team-based care. This paper describes the development and use of a new tool, the Team Assessment of Self-Management Support (TASMS), designed to understand and improve the self-management support teams provide to patients with chronic conditions. Team Assessment of Self-Management Support captures the time providers spend supporting seven different types of self-management support (process strategies, resources strategies, disease controlling strategies, activities strategies, internal strategies, social interactions strategies, and healthy behaviours strategies), their referral patterns and perceived gaps in care. Four unique features make TASMS user-friendly: it is patient-centred, it uses provider-level data to create a team profile, it has the ability to be tailored to needs (diagnosis and visit type), and visual presentation of results are quickly and intuitively understood by both providers and planners. Currently being used by providers and planners in Nova Scotia, scaling up will allow more widespread use.

"The strategies are the same, the problems may be different": a qualitative study exploring the experiences of healthcare and service providers with medication therapy management for individuals with spinal cord injury/dysfunction.

BACKGROUND: Persons with spinal cord injury/dysfunction (SCI/D) often take multiple medications to treat their secondary complications and chronic conditions (multimorbidity). Multiple healthcare and service providers are often involved in care, which can result in increased risk of fragmentation of care. Optimal medication therapy management (MTM) is essential to ensure therapeutic benefit from medication regimens. However, little is known about the experiences of providers in supporting persons with SCI/D with MTM. METHODS: Telephone interviews were conducted to explore healthcare and service providers' experiences with MTM for persons with SCI/D. Participants were recruited through clinical organizations and researchers' personal contacts. Participants were purposefully selected for diversity in profession and were required to be English speaking and to have provided care to at least one person with SCI/D. The qualitative interviews followed a semi-structured interview guide. Data display matrices were used in a constant comparative process for descriptive and interpretive analysis. RESULTS: Thirty-two interviews were conducted from April to December 2018. Each profession had distinct views on their roles in facilitating MTM for persons with SCI/D, which aligned with their respective scopes of practice. Shared provider tasks included tailoring medications, providing education, and exploring medication alternatives. Most participants felt that the care they provided for persons with SCI/D was similar to the care that they provided to other patients, with some differences relating to the physical limitations and medical complexity associated with SCI/D. Five factors were identified that impacted participants' abilities to provide MTM for persons with SCI/D: patient self-management skills, provider knowledge and confidence, provider-patient relationships, interprofessional collaboration, and provider funding models including the use of technology-supported consultations. CONCLUSION: While participants described commonalities in the barriers and enablers associated with providing MTM to persons with SCI/D and other populations, there were unique considerations identified. These SCI/D-specific considerations resulted in recommendations for improvements in MTM for this population. Future research should include perspectives from persons with SCI/D.

The structural and convergent validity of three commonly used measures of self-management in persons with neurological conditions.

PURPOSE: Self-management ability is commonly assessed in chronic disease research and clinical practice. The purpose of this study was to assess the structural and convergent validity of three commonly used self-management outcome measures in a sample of persons with neurological conditions. METHODS: We used data from a Canadian survey of persons with neurological conditions, which included three commonly used self-management measures: the Partners in Health Scale (PIH), the Patient Activation Measure (PAM), and the Self-Efficacy for Managing a Chronic Disease Scale (SEMCD). Confirmatory factor analysis was used to assess the structural and convergent validity of the three measures. RESULTS: When treated as single-factor constructs, none of the measurement models provided a good fit to the data. A four-domain version of the PIH was the best fitting model. Confirmatory factor analysis suggests that the three tools measure different, but correlated constructs. CONCLUSIONS: While the PAM, PIH and SEMCD scales are all used as measures of patient self-management, our study indicates that they measure different, but correlated latent variables. None, when treated as single, uni-dimensional construct, provides an acceptable fit to our data. This is probably because self-management is multi-dimensional, as is consistently shown by qualitative evidence. While these measures may provide reliable summative measures, multi-dimensional scales are needed for clinical use and more detailed research on self-management.

Prescription drug claims following a traumatic spinal cord injury for older adults: a retrospective population-based study in Ontario, Canada.

STUDY DESIGN: Retrospective cohort study. OBJECTIVES: The objectives for this study were to examine the prevalence of polypharmacy for people with traumatic spinal cord injury (SCI) following injury and to determine risk factors. SETTING: Ontario, Canada METHODS: We used provincial-level administrative health services data of publicly funded healthcare encounters housed at the Institute for Clinical Evaluative Sciences, Toronto, Ontario. We examined prescription medications dispensed over a 1 year period post injury for persons 66+ years with an index traumatic SCI between 2004 and 2014. Polypharmacy was defined as being on 10 or more drug classes. Descriptive and analytical statistics were conducted. Relative risks and 95% confidence limits for factors related to polypharmacy were calculated using a robust Poisson multivariate regression model. RESULTS: We identified 418 cases of persons with traumatic SCI during the observation window. A total of 233 patients (56%) were taking at least 10 drug classes in the year following discharge from care for traumatic SCI. The mean number of drug classes taken post injury was 11 (SD = 6). Continuity of care was significantly associated with polypharmacy, with a higher continuity of care (having at least 75% of visits with the same doctor) reducing the risk of polypharmacy. The most common drugs prescribed were laxatives, opioids and cardiovascular-related drugs. CONCLUSION: Findings suggest that polypharmacy is extensive among older adults with traumatic SCI. Persons with better continuity of care are less likely to have polypharmacy compared to those with less continuity. SPONSORSHIP: This project was funded by a Connaught New Investigator Award (University of Toronto), and the Craig H. Neilsen Foundation Psychosocial Research Pilot Grant (Grant #441259).

Discordance in Utility Measurement in Persons with Neurological Conditions: A Comparison of the SF-6D and the HUI3.

OBJECTIVES: To examine the extent of disagreement in estimated utility between the six-dimensional health state short form (SF-6D) and the Health Utilities Index-Mark 3 (HUI3) in Canadians with neurological conditions and how discordance varied by participant and neurological condition attributes. METHODS: The study analyzed cross-sectional survey data from the Living with and Managing the Impact of a Neurological Condition Study. Self-reported data were collected on the burden and impact of neurological conditions on participants' everyday lives. Disagreement was examined by comparing utility distributions, paired t tests of the means, Spearman ρ correlations, intraclass correlations, and Bland-Altman plots. Associations between participant and neurological condition attributes and utility differences were assessed using multiple regression models. RESULTS: Disagreement between the SF-6D and the HUI3 was substantial, with a mean utility difference of 0.15 (95% confidence interval 0.13-0.17). An intraclass correlation coefficient of 0.41 suggests only marginal agreement. The Bland-Altman plot and regression analysis showed systematic variation in utility difference associated with level of utility. Depending on the level of utility, utility differences between the SF-6D and the HUI3 shift in magnitude and direction. The pattern of disagreement did not vary substantially by participant or neurological condition characteristics. CONCLUSIONS: The SF-6D and the HUI3 provide inconsistent evaluations of utility in persons with neurological conditions. The magnitude and direction of differences in estimated utility are strongly associated with level of utility. Depending on the health status of the sample, the SF-6D and the HUI3 could provide widely contradictory utility estimates. A concern is that utility scores, and hence potential evaluations and health care decisions, may vary simply according to the choice of instrument.

Validation of the Patient Activation Measure (PAM-13) among adults with cardiac conditions in Singapore.

PURPOSE: The Patient Activation Measure (PAM-13) measures patients' knowledge, skill, and confidence in chronic condition self-management. The purpose of this study was to assess the validity of PAM-13 (English version) among English-speaking adults with cardiac conditions in Singapore. METHODS: A cross-sectional study was conducted in a convenient sample of 270 heart clinic patients. Using the unitary concept of validity, evidence of (1) internal structure via data quality, unidimensionality, differential item functioning, and internal consistency, (2) response process through item difficulty and item fit using Rasch modeling, and (3) relationship to other variables via correlations with depression and self-efficacy were examined. RESULTS: The item response was high with only one missing answer. All items had a small floor effect, but nine out of 13 items had a ceiling effect larger than 15 %. Cronbach's α was 0.86, and average inter-item correlations was 0.324. Results suggested unidimensionality; however, differences in item difficulty ranking were found. A low, negative correlation was found with depression, while a moderate, positive correlation was found with self-efficacy. CONCLUSION: Evidence in all three areas of validity were mixed. Caution should be exercised when using categorical activation "level" to inform clinical decisions.

Health and Community-Based Services for Individuals with Neurological Conditions.

BACKGROUND: The current study involves a national survey of healthcare providers who offer services for individuals with a variety of neurological conditions. It aims to describe the provision of health and community-based services as well as the admission criteria, waitlist practices, and referral sources of these services. METHODS: An online survey was directed at administrators/managers from publicly funded hospital programs, long-term care homes, and community-based healthcare provider agencies that were believed to be providing information and/or services to patients with a variety of neurological conditions. RESULTS: Approximately 60% (n=254) of respondents reported providing services in either urban/suburban areas or rural/remote areas only, whereas the remaining 40% (n=172) provided services regardless of patient location. A small proportion of respondents reported providing services for individuals with dystonia (28%), Tourette syndrome (17%), and Rett syndrome (13%). There was also a paucity of diverse healthcare professionals across all institutions, but particularly mental healthcare professionals in hospitals. Lastly, the majority of respondents reported numerous exclusion criteria with regard to service provision, including prevalent comorbid conditions. CONCLUSIONS: If the few services provided for these neurological patient populations exclude common comorbidities, it is likely that there will be no other place for these individuals to seek care.

Coping, adapting or self-managing - what is the difference? A concept review based on the neurological literature.

AIM: The aim of this study was to report: (1) an analysis of the concepts of coping, adaptation and self-management in the context of managing a neurological condition; and (2) the overlap between the concepts. BACKGROUND: The three concepts are often confused or used interchangeably. Understanding similarities and differences between concepts will avoid misunderstandings in care. The varied and often unpredictable symptoms and degenerative nature of neurological conditions make this an ideal population in which to examine the concepts. DESIGN: Concept analysis. DATA SOURCES: Articles were extracted from a large literature review about living with a neurological condition. The original searches were conducted using SCOPUS, EMBASE, CINAHL and Psych INFO. Seventy-seven articles met the inclusion criteria of: (1) original article concerning coping, adaptation or self-management of a neurological condition; (2) written in English; and (3) published between 1999-2011. METHODS: The concepts were examined according to Morse's concept analysis method; structural elements were then compared. RESULTS: Coping and adaptation to a neurological condition showed statistically significant overlap with a common focus on internal management. In contrast, self-management appears to focus on disease-controlling and health-related management strategies. Coping appears to be the most mature concept, whereas self-management is least coherent in definition and application. CONCLUSION: All three concepts are relevant for people with neurological conditions. Healthcare teams need to be cautious when using these terms to avoid miscommunication and to ensure clients have access to all needed interventions. Viewing the three concepts as a complex whole may be more aligned with client experience.

The Patient Activation Measure: a validation study in a neurological population.

PURPOSE: To assess the validity of the Patient Activation Measure (PAM13) of patient activation in persons with neurological conditions. METHODS: "The Everyday Experience of Living with and Managing a Neurological Condition" (The LINC study) surveyed 948 adults with neurological conditions residing in Canada in 2011 and 2012. Using data for 722 respondents who met coding requirements for the PAM-13, we examined the properties of the measure using principle components analysis, inter-item correlations and Cronbach's alpha to assess unidimensionality and internal consistency. Rasch modeling was used to assess item performance and scaling. Construct validity was assessed by calculating associations between the PAM and known correlates. RESULTS: PAM-13 provides a suitably reliable and valid instrument for research in patients with neurological conditions, but scaling problems may yield measurement error and biases for those with low levels of activation. This is of particular importance when used in clinical settings or for individual client care. Our study also suggests that measurement of activation may benefit from tailoring items and scaling to specific diagnostic groups such as people with neurological conditions, thus allowing the PAM-13 to recognize unique attributes and management challenges in those conditions. CONCLUSIONS: The PAM-13 is an internally reliable and valid tool for research purposes. The use of categorical activation "level" in clinical settings should be done with caution.

Development of a Chronic Care Model for Neurological Conditions (CCM-NC).

BACKGROUND: Persons with neurological conditions and their families face a number of challenges with the provision of health and community-based services. The purpose of this study was to understand the existing health and community service needs and gaps in care and to use this information to develop a model to specify factors and processes that may improve the quality of care and health and well-being for persons with neurological conditions. METHODS: We conducted semi-structured interviews with health care professionals, community-based non-health care professionals working with individuals with neurological conditions, and policy makers -from the Ministries of Health, Community and Social Services, Transportation and Education- across Canada. We used a purposive sampling and snowballing approach to obtain maximum variation across professions, sector and geography (provinces and territories, rural and urban). Data analysis was an iterative, constant comparative process involving descriptive and interpretive analyses and was initially guided by the components of the Expanded Chronic Care Model. RESULTS: A total of 180 individuals completed the interviews: 39% (n = 70) health care professionals, 47% (n = 85) community-based non-health care professionals, and 14% (n = 25) policy makers. Based on the data we developed the Chronic Care Model for Neurological Conditions (CCM-NC). The major needs/gaps are represented by the following themes: acceptance and openness to neurological conditions, evidence informed policy, investments and funding, supported transitions, caregiver support, and life enhancing resources (education, employment, housing and transportation), knowledge and awareness of neurological conditions and availability and access to health services. The model maintains that intersectoral collaboration across the health system, community and policy components is needed. It recognizes that attitudes, policies, enhanced community integration and health system changes are needed to develop activated patients and families, proactive service delivery teams, a person-centred health system and healthy public policy for persons with neurological conditions. CONCLUSION: The CCM-NC will generate debate and discussion about the actions needed in each of the model components to enable people with neurological conditions to sustain healthier lives. Next steps include validating the model with persons with neurological conditions, in and outside of the Canadian context and developing and evaluating interventions to test the model.

Factors influencing how informal caregivers of people with multiple sclerosis access and use a curated intervention website: Analysis from an RCT.

Objective: Healthcare consumers and providers are increasingly turning to digital solutions, such as curated websites. Knowing who accesses/benefits from these may improve design and development. This study investigated website usage of informal caregivers of people with multiple sclerosis and shifts in outcome plausibly associated with usage. Methods: Secondary analysis of data from a randomized clinical trial of 148 caregivers compared effectiveness of a website + tele-coaching to a website only intervention for caregivers. Groupwise differences in means/proportions were tested using t-tests and chi-square. Modified Poisson regression with a robust variance estimator and ordinal logistic regression tested the relationship between group and likelihood of website log-in. Ordinal logistic regression models examined whether caregiver characteristics were associated with website use. Generalized estimating equations (GEE) with an autoregressive correlation structure modeled the relationship between website usage and outcomes. Results: Females were more likely to access the website than males (60% vs. 43%; p = 0.05). Though not statistically significant, a possible association (POR: .85, 95% CI: .69, 1.03) between caregiver burden and website access emerged; caregivers experiencing highest levels of burden appeared less likely to engage. Usage patterns differed by treatment arm: the website-only group accessed the Caring for yourself topic significantly more (61.67% vs. 38.33%: p = .04) with similar, but insignificant, trends for other topics. Conclusions: Clinicians can be confident referring females with moderate levels of burden to website-based interventions. By contrast, male caregivers and those experiencing high levels of burden may be less likely to access these resources, pointing to the need for alternative interventions. Trial Registration: Clinicaltrials.gov, registration number: NCT0466208.

Adapting the Multiple Sclerosis Functional Composite for Telehealth Administration Using Videoconference Delivery: Methodological Considerations and Interrater Reliability.

Objective: To describe the adaptations made and to examine interrater reliability and feasibility of administering a telehealth version of the Multiple Sclerosis Functional Composite (tele-MSFC). Design: The Multiple Sclerosis Functional Composite (MSFC) is a commonly used, in-person clinical outcome assessment. It is composed of the timed 25-Foot Walk Test (T25FWT), Nine-Hole Peg Test (NHPT), and Paced Auditory Serial Addition Test (PASAT). The MSFC was adapted for videoconference administration as part of a larger clinical trial. One of the adaptations included administering a timed 12.5-Foot Walk Test (T12.5FWT) for participants who did not have adequate space in their homes for the T25FWT. Participants, examiners, and raters completed surveys online about their satisfaction and experience with tele-MSFC. Setting: Participants underwent the tele-MSFC in their homes using a laptop or smartphone while examiners scored the tele-MSFC in real-time at a remote location. Participants: Community-dwelling adults (n=61) with mild-to-moderate multiple sclerosis (MS) symptoms. Interventions: Not applicable. Main Outcome Measure: Tele-MSFC. Results: Intraclass correlation coefficients (ICC) assessed interrater reliability between the examiner and 2 independent raters who later scored a recording of the tele-MSFC. Interrater reliability was excellent (ICC>0.90) for all tests, including the T12.5FWT. Participants were highly satisfied with tele-MSFC. However, challenges included adequate space for T25FWT, technical difficulties, and safety and privacy considerations of individuals with moderate impairments who were requested to have their caregivers present during testing. Conclusion: The tele-MSFC is reliable and feasible to administer with adaptations for community-dwelling adults with mild to moderate MS symptoms. Further validation of T12.5FWT is needed.

The everyday experience of living with and managing a neurological condition (the LINC study): study design.

BACKGROUND: The impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada. While some economic data is known, the human costs of living with a neurological condition are poorly understood and rarely factored into future burden analyses. The "Living with the Impact of a Neurological Condition (LINC)" study aims to fill this gap. It seeks to understand, for children and adults with neurological conditions, the supports and resources that make everyday life possible and meaningful. METHODS/DESIGN: The LINC study is a nested study using mixed methods. We are interested in the following outcomes specifically: health status; resource utilization; self-management strategies; and participation. Three studies captured data from multiple sources, in multiple ways and from multiple perspectives. Study One: a population-based survey of adults (n=1500), aged 17 and over and parents (n=200) of children aged 5 to 16 with a neurological condition. Study Two: a prospective cohort study of 140 adults and parents carried out using monthly telephone calls for 10 months; and Study Three: a multiple perspective case study (MPCS) of 12 adults and 6 parents of children with a neurological condition. For those individuals who participate in the MPCS, we will have data from all three studies giving us rich, in depth insights into their daily lives and how they cope with barriers to living in meaningful ways. DISCUSSION: The LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves. A variety of tools will be used in a combination, which is unique and innovative. This study will highlight the commonalities of burden that Canadians living with neurological conditions experience as well as their strategies for managing everyday life.

What we know about fatigue self-management programs for people living with chronic conditions: A scoping review.

OBJECTIVE: The significant impact of fatigue on the lives of patients with chronic conditions has demanded a response. One response has been the development and testing of self-management programs. Little is known about what these programs have in common or how they differ. This scoping review compared the key components of fatigue self-management programs. METHODS: Scoping review methodology was employed. Databases of CINAHL, Academic Search Premier, PsycINFO, Cochrane and Medline were searched to identify relevant sources. RESULTS: Included fatigue programs were compared using a three-component framework: 1) self-management strategies; 2) active patient participation; and 3) self-management support. Although all programs included some aspects of these components, the extent varied with only a few domains of these components found across all programs. CONCLUSION: The three self-management components employed in this study showed potential benefits in identifying similarities and differences across fatigue programs with comparable and distinct underlying theories. This three-component framework could facilitate identification of domains associated with positive outcomes. PRACTICE IMPLICATIONS: It is essential that authors of programs provide detailed descriptions to enable inter-program comparison. The three-component framework chosen for this review was capable of describing and comparing fatigue self-management programs, paving the way for more effective interventions.

Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial.

BACKGROUND: Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS. METHODS: From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention. RESULTS: A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (P = .037) and the stress subscale score (P = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores. CONCLUSIONS: Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.