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.

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.

Medication self-management toolkits for adults with multiple sclerosis: A scoping review.

Background: Multiple sclerosis (MS) is an autoimmune disease that is often treated with multiple medications. Managing multiple medications, also known as polypharmacy, can be challenging for persons with MS. Toolkits are instructional resources designed to promote behaviour change. Toolkits may support medication self-management for adults with MS, as they have been useful in other populations with chronic conditions. Objective: The main purpose of this review was to identify and summarize medication self-management toolkits for MS, as related to the design, delivery, components, and measures used to evaluate implementation and/or outcomes. Methods: A scoping review was conducted following guidelines by JBI. Articles were included if they focused on adults (18 years or older) with MS. Results: Six articles reporting on four unique toolkits were included. Most toolkits were technology-based, including mobile or online applications, with only one toolkit being paper-based. The toolkits varied in type, frequency, and duration of medication management support. Varying outcomes were also identified, but there were improvements reported in symptom management, medication adherence, decision-making, and quality of life. The six studies were quantitative in design, with no studies exploring the user experience from a qualitative or mixed-methods design. Conclusions: There is limited research on medication self-management toolkits among adults with MS. Future development, implementation, and evaluation mixed-methods research are needed to explore user experiences and overall design of toolkits.

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.

Fatigue as an Understudied Barrier to Participation in Life Roles.

Fatigue is one of the most burdensome and disabling symptoms in numerous acute and chronic conditions and is associated with reduced participation in all aspects of daily life, for example, parenting, employment, and socialization. Historically, occupational practitioners played key roles in fatigue management by creating and implementing interventions. The American Occupational Therapy Foundation convened a Planning Grant Collective workshop with the goal to develop collaborative research ideas and proposals to advance the understanding and management of fatigue. Participants from occupational therapy and other disciplines, with expertise with fatigue or who were conducting research on fatigue, participated in a 3-day virtual workshop. Four main topics emerged: implementation science, treatment taxonomy, trial design and comparative effectiveness, and phenotyping. This white paper describes the proceedings, summarizes the discussions, and outlines recommendations from the PGC workshop on fatigue.

Medication self-management interventions for persons with stroke: A scoping review.

The use of multiple medications is common following a stroke for secondary prevention and management of co-occurring chronic conditions. Given the use of multiple medications post-stroke, optimizing medication self-management for this population is important. The objective of this scoping review was to identify and summarize what has been reported in the literature on interventions related to medication self-management for adults (aged 18+) with stroke. Electronic databases (Ovid Medline, Ovid Embase, EBSCO CINAHL, Ovid PsycINFO, Web of Science) and grey literature were searched to identify relevant articles. For inclusion, articles were required to include an adult population with stroke undergoing an intervention aimed at modifying or improving medication management that incorporated a component of self-management. Two independent reviewers screened the articles for inclusion. Data were extracted and summarized using descriptive content analysis. Of the 56 articles that met the inclusion criteria, the focus of most interventions was on improvement of secondary stroke prevention through risk factor management and lifestyle modifications. The majority of studies included medication self-management as a component of a broader intervention. Most interventions used both face-to-face interactions and technology for delivery. Behavioural outcomes, specifically medication adherence, were the most commonly targeted outcomes across the interventions. However, the majority of interventions did not specifically or holistically target medication self-management. There is an opportunity to better support medication self-management post-stroke by ensuring interventions are delivered across sectors or in the community, developing an understanding of the optimal frequency and duration of delivery, and qualitatively exploring experiences with the interventions to ensure ongoing improvement.

A scoping review of medication self-management intervention tools to support persons with traumatic spinal cord injury.

BACKGROUND: Persons with traumatic spinal cord injury (SCI) use multiple medications (polypharmacy) to manage the high number of secondary complications and concurrent conditions. Despite the prevalence of polypharmacy and challenges associated with managing medications, there are few tools to support medication self-management for persons with SCI. OBJECTIVE: The purpose of this scoping review was to identify and summarize what is reported in the literature on medication self-management interventions for adults with traumatic SCI. METHODS: Electronic databases and grey literature were searched for articles that included an adult population with a traumatic SCI and an intervention targeting medication management. The intervention was required to incorporate a component of self-management. Articles were double screened and data were extracted and synthesized using descriptive approaches. RESULTS: Three studies were included in this review, all of which were quantitative. A mobile app and two education-based interventions to address self-management of SCI, medication management, and pain management, respectively, were included. Only one of the interventions was co-developed with patients, caregivers, and clinicians. There was minimal overlap in the outcomes measured across the studies, but learning outcomes (e.g., perceived knowledge and confidence), behavioural outcomes (e.g., management strategies, data entry), and clinical outcomes (e.g., number of medications, pain scores, functional outcomes) were evaluated. Results of the interventions varied, but some positive outcomes were noted. CONCLUSIONS: There is an opportunity to better support medication self-management for persons with SCI by co-designing an intervention with end-users that comprehensively addresses self-management. This will aid in understanding why interventions work, for whom, in what setting, and under what circumstances.

The impact of the COVID-19 pandemic on primary care physicians and nurses in Nova Scotia: a qualitative exploratory study.

BACKGROUND: The COVID-19 pandemic has brought immense disruption worldwide, dramatically altering the ways we live, work and learn on a day-to-day basis; however, few studies have investigated this from the perspective of primary care providers. In this study, we sought to explore the experiences of primary care providers in the province of Nova Scotia, with the intention of understanding the impact of the COVID-19 pandemic on primary care providers' ability to provide care, their information pathways, and the personal and professional impact of the pandemic. METHODS: We conducted an exploratory qualitative research study involving semistructured interviews conducted via Zoom videoconferencing or telephone with primary care providers (physicians, nurse practitioners and family practice nurses) who self-identified as working in primary health care in Nova Scotia from June 2020 to April 2021. We performed a thematic analysis involving coding and classifying data according to themes. Emergent themes were then interpreted by seeking commonalties, divergence, relationships and overarching patterns in the data. RESULTS: Twenty-four primary care providers were interviewed. Subsequent analysis identified 4 interrelated themes within the data: disruption to work-life balance, disruptions to "non-COVID-19" patient care, impact of provincial and centralized policies, and filtering and processing an influx of information. INTERPRETATION: Our findings showed that managing a crisis of this magnitude requires coordination and new ways of working, balancing professional and personal life, and adapting to already implemented changes (i.e., virtual care). A specific primary care pandemic response plan is essential to mitigate the impact of future health care crises.

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.

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.

Managing Fatigue in Parkinson's Disease: Protocol for a Pilot Randomized Controlled Trial.

Background. Fatigue is a disabling symptom of Parkinson's disease (PD). Managing Fatigue: A Six-Week Energy Conservation Intervention was developed to improve the occupational performance of people with fatigue. Efficacy of this program has not been established in PD. Purpose. This study will assess feasibility of the Managing Fatigue: Individual Program (MFIP) delivered via videoconference, the Randomized Controlled Trial (RCT) protocol, and the preliminary effectiveness of the MFIP. Methods. A mixed-methods approach nested in a pilot RCT, randomizing 54 participants 1:1 to usual care or MFIP arms, will be employed to evaluate the feasibility and preliminary effectiveness of MFIP. Qualitative and quantitative data will be collected simultaneously. Implications. Results will identify evidence for establishing protocol requirements for a full-scale RCT. Knowledge of the effectiveness of the one-to-one videoconference delivery format of the program has the potential to enhance the accessibility and the quality of care of the PD population.

Spinal cord injury/dysfunction and medication management: a qualitative study exploring the experiences of community-dwelling adults in Ontario, Canada.

PURPOSE: To explore the attitudes, beliefs and experiences pertaining to the management of prescribed and unprescribed medications among community-dwelling adults with spinal cord injury/dysfunction (SCI/D) in Ontario, Canada. MATERIALS AND METHODS: In-depth semi-structured interviews were conducted by telephone. Each interview was audio-recorded, transcribed verbatim and analyzed using inductive thematic analysis. RESULTS: Of the 19 participants, 11 were male and 8 were female, with an age range from 36 to 76 years; 14 participants had traumatic SCI and 5 had non-traumatic spinal cord dysfunction. All but three participants were taking five or more medications, including prescription medications, over-the-counter medications and natural health products. The three main themes identified were: disruptive nature of medications, fear of negative outcomes and self-management: playing a critical role. CONCLUSIONS: Medication management is a complex, multifaceted and non-linear process. Persons with SCI/D described experiences with medication-taking that are not well understood by current medication management frameworks. Thus, it is essential to broaden our lens and situate persons with SCI/D medication-taking experiences within self-management frameworks to allow for a more comprehensive and reflective understanding of their experiences. Based on the findings from this study, recommendations for future research, practice and policy have been suggested.IMPLICATIONS FOR REHABILITATIONPersons with spinal cord injury/dysfunction identified numerous challenges and concerns with medication use post-injury.Educational medication management programs should be implemented post-discharge to improve the state of knowledge around medications (indication, side effects, strategies for taking medications) and how to optimize medication management.In order to optimize experiences and outcomes, there is a need for explicit and ongoing discussions around medication management between persons with spinal cord injury/dysfunction and their healthcare providers.

An exploration of attitudes and preferences towards medications among healthcare providers and persons with spinal cord injury/dysfunction: a qualitative comparison.

PURPOSE: To compare the attitudes and preferences of persons with spinal cord injury/dysfunction (SCI/D) and healthcare providers regarding prescription medications, over-the-counter medications, and natural health products (NHPs). MATERIALS AND METHODS: A qualitative study involving semi-structured interviews with healthcare providers (n = 32) and persons with SCI/D (n = 19) in Canada. Inductive descriptive and interpretive analyses were conducted using data display matrices and a constant comparative approach. RESULTS: Participants described differing perceptions of therapeutic benefits based on medication type, with shared attitudes about the therapeutic benefits of prescription medications and differing views about the effectiveness of NHPs. Despite the perceived effectiveness of prescription medications, persons with SCI/D preferred to avoid them due to concerns about side effects, safety, and stigma. Persons with SCI/D were often concerned about the long-term safety of prescription medications, whereas providers focused more on medication-related addictions. Participants discussed stigma relating to prescription medications, NHPs, and medicinal marijuana. CONCLUSION: Healthcare providers and persons with SCI/D described different attitudes about and preferences for pharmacotherapeutic products, contributing to challenges in optimizing medication management. Strategies to improve medication management include shared decision-making to incorporate patient preferences into care plans and explicit discussions about long-term medication safety. Further, steps are needed to combat the stigma associated with medication use.Implications for rehabilitationFollowing a person-centered approach to shared decision-making, prescribers should initiate explicit conversations about patient medication preferences, short and long-term prescription medication side effects, and alternative treatment options.Regarding prescription medication safety, persons with spinal cord injury/dysfunction focused on the long term impact of medications, while providers focused on medication-related addictions, highlighting a disconnect that should be discussed during initiation, continuation, or discontinuation of a medication.Providers should be mindful of the stigma associated with taking multiple prescription medications, including medicinal marijuana, as well as the stigma associated with over-the-counter medications and natural health products.Providers could benefit from education about spinal cord injury/dysfunction-specific prescription medications and could benefit from increased education about natural health products.

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial.

BACKGROUND: Of the approximately 1 million people living with multiple sclerosis in the United States, more than half receive informal, unpaid care or support from family or friends (caregivers). These caregivers report high levels of stress, anxiety, and negative emotions. Few researchers have conducted psychoeducational interventions for these caregivers. OBJECTIVE: This paper presents a protocol for a randomized clinical trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression, and negative emotions for caregivers of persons with multiple sclerosis. METHODS: Participants included any self-identified family or friend caregiver of a person with multiple sclerosis. Data collection began in April 2021 and is expected to continue until November 2021. Participants will be randomized to receive either a website-only or a website-coaching intervention delivered for 6 weeks. Data will be collected at baseline, 6 weeks after baseline (after delivery of intervention), and 6 weeks later. RESULTS: The protocol was approved by the institutional review board of the Case Western Reserve University on January 21, 2021 (protocol 20201484). As of May 2021, 66 participants were enrolled. CONCLUSIONS: Our findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of persons with multiple sclerosis to reduce negative psychological outcomes associated with caregiving. TRIAL REGISTRATION: ClinicalTrials.gov NCT04662008; http://clinicaltrials.gov/ct2/show/NCT04662008. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/30617.

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.

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.

Managing everyday life: Self-management strategies people use to live well with neurological conditions.

OBJECTIVE: This paper uses the Taxonomy of Everyday Self-management Strategies (TEDSS) to provide insight and understanding into the complex and interdependent self-management strategies people with neurological conditions use to manage everyday life. METHODS: As part of a national Canadian study, structured telephone interviews were conducted monthly for eleven months, with 117 people living with one or more neurological conditions. Answers to five open-ended questions were analyzed using qualitative content analysis. A total of 7236 statements were analyzed. RESULTS: Findings are presented in two overarching patterns: 1) self-management pervades all aspects of life, and 2) self-management is a chain of decisions and behaviours. Participants emphasized management of daily activities and social relationships as important to maintaining meaning in their lives. CONCLUSION: Managing everyday life with a neurological condition includes a wide range of diverse strategies that often interact and complement each other. Some people need to intentionally manage every aspect of everyday life. PRACTICE IMPLICATIONS: For people living with neurological conditions, there is a need for health providers and systems to go beyond standard advice for self-management. Self-management support is best tailored to each individual, their life context and the realities of their illness trajectory.

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.

Protocol for development, calibration and validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC).

INTRODUCTION: Assessing and measuring patients' chronic condition self-management needs are critical to quality health care and to related research. One in three adults around the world live with multiple chronic conditions. While many patient-reported measures of self-management have been developed, none has emerged as the gold standard, and all have one or more of the following limitations: (1) they fail to measure the different domains of self-management important to patients, (2) they lack sufficient specificity to support patient-centred care or identify the specific components of self-management interventions that work and/or (3) they lack suitability for patients with multiple chronic conditions. METHODS AND ANALYSIS: The Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) is being developed to overcome these shortcomings. It will measure respondents' perceived success (or difficulty) in self-managing seven domains important to patients. The protocol has three phases. Phase 1 is conceptual model development and item generation. Phase 2 is assessment of the relevance and understanding of items by people with chronic conditions. Phase 3 is item analysis, dimensionality assessment, scaling and preliminary validation of the PRISM-CC using an online survey of people with chronic conditions (n~750). The expected completion date is early 2021. ETHICS AND DISSEMINATION: This study will adhere to the Canadian Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans. Ethics approval for all phases has been obtained from the Nova Scotia Health Authority Research Ethics Board. Once completed, the PRISM-CC will be made available for research and healthcare at minimal to no cost.