Client and clinician perspectives about a virtual education and exercise chronic disease management programme for people with hip and knee osteoarthritis.

INTRODUCTION: Osteoarthritis (OA) is one of the most prevalent chronic conditions in Canada. Despite the established benefits of non-pharmacological management (education, exercise) for people with OA, many do not receive treatment, resulting in pain, decreased physical function, and poorer quality of life. Virtual programme options grew significantly during the recent pandemic and may provide longer-term opportunities for increased uptake by reaching individuals otherwise unable to participate. This study explored the experiences and perspectives of clients participating in and clinicians providing the Good Life with osteoArthritis: Denmark (GLA:DTM) Canada remote programme. METHODS: This qualitative descriptive study recruited 10 clients with hip and/or knee OA and 11 clinicians across Canada using purposive sampling. An online pre-interview survey was completed, and individual interviews were conducted, audio-recorded, transcribed verbatim and analysed independently by two researchers using inductive thematic analysis. Coding and analyses were initially conducted separately by group and then compared and combined. RESULTS: Four overarching themes (and 11 subthemes) were identified: (1) Expected and unexpected benefits of virtual programs; (2) Drawbacks to virtual programs; (3) Programme delivery in a virtual world; (4) Shifting and non-shifting perspectives. Although initially sceptical, after completion of the programme, clients were in favour of virtual delivery with many benefits described. Clinicians' perspectives varied about feedback aimed to correct client movement patterns. CONCLUSIONS: Clients and clinicians identified important experiential and procedural elements for virtual chronic disease management programs that include education and exercise. Additional work is needed to understand if the GLA:DTM remote outcomes are equivalent to the in-person programme.

Comparison across age groups of causes, circumstances, and consequences of falls among individuals living in Canada: A cross-sectional analysis of participants aged 45 to 85 years from the Canadian Longitudinal Study on Aging.

Falls are a leading cause of injury-related deaths and hospitalizations among Canadians. Falls risk has been reported to be increased in individuals who are older and with certain health conditions. It is unclear whether rurality is a risk factor for falls. This study aimed to investigate: 1) fall profiles by age group e.g., 45 to 54 years, 55 to 64 years, 65 to 74 years, 75 to 85 years; and 2) falls profiles of individuals, by age group, living in rural versus urban areas of Canada. Data (N = 51,338) from the Canadian Longitudinal Study on Aging was used to examine the relationship between falls and age, rurality, chronic conditions, need for medical attention, and fall characteristics (manner, location, injury). Self-reported falls within a twelve-month period occurred in only 4.8% (single fall) and 0.8% (multiple falls) of adults. Falls were not related to rural residence or age, but those with memory impairment, multiple sclerosis, as well as other chronic conditions such as mood disorder, anxiety disorder, and hyperthyroidism not often thought to be associated with falls, were also more likely to fall. Older individuals were more likely to fall indoors or fall while standing or walking. In contrast, middle-aged individuals were more likely to fall outdoors or while exercising. Type of injury was not associated with age, but older individuals were more likely to report hospitalization after a fall. This study shows that falls occur with a similar frequency in individuals regardless of age or urban/rural residence. Age was associated with fall location and activity. A more universally applicable multi-facted approach, rather than one solely based on older age considerations, to screening, primary prevention and management may reduce the personal, social, and economic burden of falls and fall-related injuries.

Translation of the Preference-Based Amyotrophic Lateral Sclerosis Scale into French.

The objective of this study was to translate the Preference-Based Amyotrophic Lateral Sclerosis Scale to French-Canadian. After the scale underwent forward and back translations, the expert committee examined the translated versions and found minor grammatical errors and suggested idioms to be changed to better represent French-Canadian language. Cognitive debriefing interviews were carried out to assess the pre-final version for clarity, and minor changes were made. Consensus from the expert committee and people with amyotrophic lateral sclerosis on the measure's clarity, word choice, and meaning were achieved, resulting in the final French version of the Preference-Based Amyotrophic Lateral Sclerosis Scale.

"Picturing a Way Forward": Strategies to Manage the Effects of COVID-19-Related Isolation on Long-Term Care Residents and Their Informal Caregivers.

BACKGROUND AND OBJECTIVES: Strategies to manage the coronavirus disease 2019 (COVID-19) pandemic included widespread use of physical distancing measures. These well-intended strategies adversely affected long-term care (LTC) residents' socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and their caregivers. This study aimed to understand how these measures affected informal caregivers of people living in LTC homes in Ontario. Strategies to increase socialization and promote social connection during and post-COVID-19 were also explored. RESEARCH DESIGN AND METHODS: This qualitative study used descriptive and photovoice approaches. Of the 9 potential caregivers identified, 6 participated in the study and shared their experiences and photographic reflections in virtual focus group sessions. RESULTS: Findings highlighted the increased social isolation experienced by people living in LTC and their caregivers during COVID-19. Caregivers reported pronounced declines in residents' well-being and were frustrated by challenges connecting with their family members during quarantine. Attempts made by LTC homes to maintain social connections, such as window visits and video calls, did not fulfill the social needs of residents and their caregivers. DISCUSSION AND IMPLICATIONS: Findings underscore a need for better social support and resources for both LTC residents and their caregivers going forward to prevent further isolation and disengagement. Even in times of lockdown, LTC homes must implement policies, services, and programs that promote meaningful engagement for older adults and their families.

Barriers and Facilitators of a Community-Based, Slow-Stream Rehabilitation, Hospital-to-Home Transition Program for Older Adults: Perspectives of a Multidisciplinary Care Team.

The purpose of this study was to examine the perspectives of support staff, health care professionals, and care coordinators working in or referring to a community-based, slow-stream rehabilitation, hospital-to-home transition program regarding gaps in services, and barriers and facilitators related to implementation and functioning of the program. This was a qualitative descriptive study. Recruitment was conducted through purposive sampling, and 23 individuals participated in a focus groups or individual semi-structured interview. Transcripts were analyzed by six researchers using inductive thematic analysis. Themes that emerged were organized based on a socio-ecological framework. Themes were categorized as: (1) macro level, meaning gaps while waiting for program, limited program capacity, and gaps in service post-program completion; (2) meso level, meaning lack of knowledge and awareness of the program, lack of specific referral process and procedures, lack of specific eligibility criteria, and need for enhanced communication among care settings; or (3) micro level, meaning services provided, program participant benefits, person-centred communication, program structure constraints, need for use of outcome measures, and follow-up or lack of follow-up. Implementation of seamless patient information sharing, documentation, use of specific referral criteria, and use of standardized outcome measures may reduce the number of unsuitable referrals and provide useful information for referral and program staff.

Insight into the experiences of caregivers of older adults in long-term care homes: A photovoice study.

AIMS: To explore the lived experiences of caregivers of people living in long-term care (LTC) homes during the initial phases of the COVID-19 pandemic and potential supports and resources needed to improve caregivers' quality of life. BACKGROUND: Carers (or care partners) of adults in LTC contribute substantially to the health and well-being of their loved ones by providing physical care, emotional support and companionship. Despite their critical role, little is known about how caregivers have been impacted by the pandemic. DESIGN: An interpretive descriptive approach that incorporated the photovoice method was used. METHODS: Using a purposive sampling strategy, six family carers in Ontario, Canada were recruited between September and December 2021. Over a 4-week period, caregivers took pictures depicting their experience of the pandemic that were shared in a virtual focus group. Visual and text data were analysed using thematic analysis with an inductive approach. FINDINGS: Caregivers expressed feelings of frustration, confusion and joy. Emerging themes included: (i) feeling like a 'criminal' amidst visitor restrictions and rules; (ii) experiencing uncertainty and disappointment in the quality of care of long-term care homes; (iii) going through burnout; and (iv) focusing on small joys and cherished memories. CONCLUSIONS: The combination of visual and textual methods provided unique insight into the mental distress, isolation and intense emotional burdens experienced by caregivers during the pandemic. IMPACT: Our findings underscore the need for LTC organizations to work in unison with caregivers to optimize the care of residents and support the mental health of caregivers. REPORTING METHOD: This work adhered to the consolidated criteria for reporting qualitative research (COREQ) checklist. PUBLIC CONTRIBUTIONS: The caregivers included in the study were involved in the co-creative process as active contributors informing the design and validation of the codes and themes.

Impact of dance interventions on the symptoms of dementia: A mixed-methods systematic review.

OBJECTIVES: This mixed-methods systematic review determined the impact of dance interventions on symptoms of Alzheimer's disease and related dementias (ADRD) among persons living in residential care. METHODS: Seven databases (Medline, EMBASE, CINAHL, PsycINFO, Web of Science, Ageline, and AMED) were searched. Studies published before June 2022 that investigated the impact of dance interventions on symptoms of ADRD were eligible for inclusion. Risk of bias was assessed using CASP, ROBINS-I, and ROB-2. Quantitative and qualitative objectives provided a convergent segregate narrative synthesis for the review. The review protocol was registered on PROSPERO (CRD42021220535). RESULTS: Two quantitative and two qualitative studies met the inclusion criteria. Dance interventions decreased levels of agitation and aggression, and improved behavioural and psychological symptoms. CONCLUSIONS: Studies suggest that dance interventions reduce the symptoms of dementia through increased expression, emotions, and improved relationships for persons with ADRD. However, the small number of included studies limits these conclusions.

Short-Term, Community-Based, Slow-Stream Rehabilitation Program for Older Adults Transitioning from Hospital to Home: A Mixed Methods Program Evaluation.

Introduction: Shortened hospital stays have shifted the burden of care for older adults to community, informal (ie, family, caregiver) and formal post-acute care and services, highlighting the need for effective post-hospital stay services and programs. As there is a dearth of information related to community-based, slow-stream rehabilitation program models for older adults transitioning from hospital to home in the Canadian context, the paper describes a mixed methods evaluation of such a program. Materials and Methods: A mixed methods program evaluation, with process- and outcome-related elements, included 1) review and analysis of program documents; 2) observations to examine fidelity. Observation data were coded and summarized using descriptive statistics. Coded information and data were compared to document review data; 3) quantitative assessment of pre-post changes in physical, social, and psychological outcome measure and instrument scores using descriptive statistics, paired t-tests and confidence intervals (p = 0.05); and 4) exploration of acceptability through interviews and focus groups with 41 of the older adult participants and 17 family caregivers. Thematic analysis was used to examine focus group and interview transcripts. Results: Observational data indicated alignment with the program document information overall. Statistically and clinically significant positive trends in improvement for physical outcome measure scores were observed (6-minute Walk Test, Life Space Assessment, Short Physical Performance Battery, Rapid Assessment of Physical Activity). Participants and family caregivers identified several positives and benefits of the program, ie, improvement in physical, social and mental well-being, decreased caregiver burden; and areas for improvement ie, need for more information about the program prior to enrollment and individualization, several of which aligned with the observation and quantitative data. Discussion/Conclusion: This mixed methods program evaluation provided a detailed description of a community-based, slow-stream rehabilitation program for older adults who are transitioning to home post-hospital stay and its participants. Evidence of program fidelity, acceptability, and positive trends in improvement in physical outcome measure scores were found. Information about program strengths and areas for improvement can be used by stakeholders to inform program refinement and enhancement.

Assessing the Measurement Properties of the Self-Administered Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): A Rasch Analysis.

OBJECTIVE: The self-administered version of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is used to monitor function and disease progression in individuals with amyotrophic lateral sclerosis (ALS). However, the performance of the self-administered ALSFRS-R has not been assessed using Rasch Measurement Theory. Therefore, the purpose of this study was to examine the psychometric properties of the self-administered ALSFRS-R using Rasch analysis. METHODS: Rasch analysis was performed on self-administered ALSFRS-R data from individuals with ALS across Canada. The following 6 aspects of Rasch analysis were examined using RUMM2030: fit via residuals and chi-square statistics, targeting via person-item threshold maps, dependency via item residual correlations, unidimensionality through principal components analysis of residuals, reliability via person separation index, and stability through differential item functioning analyses for sex, age, and language. RESULTS: Analysis was performed on 122 participants (mean age: 52.9 years; 62.8% men). The overall scale demonstrated good fit, reliability, and stability; however, multidimensionality was found. To address this issue, items were divided into 3 subscales (bulbar, motor, and respiratory function), and Rasch analysis was performed for each subscale. The subscales demonstrated good fit, reliability, stability, and unidimensionality. However, there were still issues with item dependency for all subscale and targeting for bulbar and respiratory subscales. CONCLUSIONS: The self-administered ALSFRS-R is reliable, internally valid, and stable across sex, age, and language subgroups; however, it is recommended that the ALSFRS-R be scored by subscale. Future studies can look at revising and/or adding items to tackle misfit, redundancy, and ceiling effects. IMPACT: Self-administered measures are simple to administer and inexpensive. The self-administered ALSFRS-R was found to be psychometrically sound and can be used as a tool to monitor disease progression and function in ALS.

What mobility factors are critical to include in a comprehensive mobility discharge assessment framework for older adults transitioning from hospital-to-home in the community? An international e-Delphi study.

PURPOSE: To prioritize and achieve consensus on mobility determinant factors [cognitive, financial, environmental, personal, physical, psychological, social] considered critical to include in the COmprehensive Mobility Discharge Assessment Framework (COMDAF) for older adults transitioning from hospital-to-home. MATERIALS AND METHODS: We conducted a three-round modified e-Delphi process with 60 international experts (seven older adults, nine family caregivers, 24 clinicians, and 20 researchers) from nine countries with universal or near-universal health coverage. Expert members rated 91 factors identified from scoping reviews using a 9-point scale: not important (1-3), important (4-6), and critical (7-9). RESULT: A total of 41 of 91 factors (45.1%) met the a-priori consensus criterion after three rounds: five cognitive, five environmental, two personal, 19 physical, six psychological, and six social factors. No financial factors reached a consensus. The older adult steering committee member recommended the addition of two environmental factors, resulting in 43 mobility factors included in the COMDAF. CONCLUSIONS: We advanced a comprehensive mobility framework by developing, through consensus, 43 mobility factors to be assessed as part of a COMDAF. However, its use in hospital-to-home may not be feasible. Therefore, future research will determine the core mobility factors for COMDAF and which measurement instruments best measure these factors. RELEVANCE: An interdisciplinary discharge rehabilitation team can utilize the COMDAF during hospital-to-home transition.Implications for rehabilitationMobility assessment following a hospital discharge is a complex process requiring an interdisciplinary discharge rehabilitation team.This study provided a comprehensive list of 91 factors across all seven mobility determinants (cognitive, environmental, financial, personal, physical, psychological, and social) for clinicians in other care settings to use as a starting point to determine which mobility factor should be assessed during older adults' hospital-to-home transition.This international e-Delphi study identified 43 factors within mobility determinants (cognitive, environmental, personal, physical, psychological, and social) to be included in a Comprehensive Mobility Discharge Assessment Framework to assess older adults' mobility during the hospital to home transition.Using these 43 factors, clinicians can identify which assessment tool is best suited to assess the factors while reflecting on the logistics and feasibility; this is the next phase of this project.

Guiding Documents for Engaging with Remote Chronic Disease Management Programs as a Healthcare Provider: A Scoping Review.

Introduction: Chronic disease management programs (CDMP) that include education and exercise enhance outcomes and reduce healthcare costs. Remote CDMP have the potential to provide convenient, cost-effective, and accessible options for individuals, but it is unclear how to best implement programs that include education and exercise. This review identified and synthesized resources for implementing remote CDMP programs that incorporate education and exercise. Methods: Peer-reviewed and grey literature were systematically searched from January 1998 to May 2022. Covidence software was used for screening and extraction. The data were synthesized and presented in a narrative and tabular format. Results: Six peer-reviewed manuscripts and six grey literature documents published between 2006-2022 were included. All resources described individual programs targeting various chronic conditions. Provider training, consent, participant screening, and safety considerations were identified. Conclusions: Guidelines for remote CFMP programs are lacking. Additional work is needed to design remote CDMP guidelines incorporating education and exercise.

A comprehensive mobility discharge assessment framework for older adults transitioning from hospital-to-home in the community-What mobility factors are critical to include? Protocol for an international e-Delphi study.

BACKGROUND: Mobility deficits have been identified as an independent risk factor for hospital readmission for adults ≥65 years. Despite evidence indicating how determinants additively influence and predict mobility, no hospital-to-home care transition models comprehensively assess all seven mobility determinants, cognitive, financial, environmental, personal, physical, psychological, and social. There is currently a lack of clarity regarding what factors clinicians and researchers should evaluate for each mobility determinant. The purpose of this e-Delphi study is to prioritize and reach consensus on the factors for each mobility determinant that are critical to assess as part of the Comprehensive Mobility Discharge Assessment Framework (CMDAF) when older adults are discharged from hospital-to-home. METHODS: This protocol paper is an international modified e-Delphi study following the Recommendations for the Conducting and Reporting of Delphi Studies. International researchers, clinicians, older adults and family caregivers residing in a country with universal or near-universal health coverage will be invited to participate as 'experts' in three e-Delphi rounds administered through DelphiManager©. The e-Delphi Round 1 questionnaire will be developed based on scoping review findings and will be pilot tested. For each round, experts will be asked to rate factors for each determinant that are critical to assess as part of the CMDAF using a 9-point scale: Not Important (1-3), Important but Not Critical (4-6), and Critical (7-9). The scale will include a selection option of "unable to score" and experts will also be asked to provide a rationale for their scoring and suggest missing factors. Experts will receive feedback summaries in Rounds 2 and 3 to guide them in reflecting on their initial responses and re-rating of factors that have not reached consensus. The criteria for reaching consensus will be if ≥70% of experts rate a factor as "critical" (scores ≥7) and ≤ 15% of experts rate a factor as "not important" (scores≤ 3). Quantitative data will be analyzed using median values, frequencies, percentages, interquartile range, and bar graphs; Wilcoxon matched-pairs signed-rank test will be used to assess the stability of participants' responses. Rationale (qualitative data) provided in the open-ended comments section will be analyzed using content analysis. CONCLUSION: This study is a first step in developing the CMDAF and will be used to guide a subsequent e-Delphi survey to decide on the tools that should be used to measure the examples of each factor included in our framework.

A stakeholder engagement strategy for an ongoing research program in rural dementia care: Stakeholder and researcher perspectives.

Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.

Rehabilitation at the Time of Pandemic: Patient Journey Recommendations.

Purpose: The World Health Organization (WHO) declared severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) a pandemic in March 2020, causing almost 3.5 million coronavirus disease (COVID-19) related deaths worldwide. The COVID-19 pandemic has imposed a significant burden on healthcare systems, economies, and social systems in many countries around the world. The access and delivery of rehabilitation care were severely disrupted, and patients have faced several challenges during the COVID-19 outbreak. These challenges include addressing new functional impairments faced by survivors of COVID-19 and infection prevention to avoid the virus spread to healthcare workers and other patients not infected with COVID-19. In this scoping review, we aim to develop rehabilitation recommendations during the COVID-19 pandemic across the continuum of rehabilitation care. Materials and Methods: Established frameworks were used to guide the scoping review methodology. Medline, Embase, Pubmed, CINAHL databases from inception to August 1, 2020, and prominent rehabilitation organizations' websites were searched. Study Selection: We included articles and reports if they were focused on rehabilitation recommendations for COVID-19 survivors or the general population at the time of the COVID-19 pandemic. Data Extraction: Two of our team members used the pre-tested data extraction form to extract data from included full-text articles. The strength and the quality of the extracted recommendations were evaluated by two reviewers using the GRADE (Grading of Recommendations, Assessment, Development and Evaluation) approach. Results: We retrieved 6,468 citations, of which 2,086 were eligible after removing duplicates. We excluded 1,980 citations based on the title and the abstract. Of the screened full-text articles, we included 106 studies. We present recommendations based on the patient journey at the time of the pandemic. We assessed the evidence to be of overall fair quality and strong for the recommendations. Conclusion: We have combined the latest research results and accumulated expert opinions on rehabilitation to develop acute and post-acute rehabilitation recommendations in response to the global COVID-19 pandemic. Further updates are warranted in order to incorporate the emerging evidence into rehabilitation guidelines.

Description and Functional Benefits of Meeting Frequency, Intensity, and Time of Resistance and Cardiovascular Exercises: A Study of Older Adults in a Community-Based, Slow-Stream Rehabilitation, Hospital-to-Home Transition Program.

This prospective cohort study described cardiovascular and resistance exercises completed by older adults in a community-based, slow-stream rehabilitation, hospital-to-home transition program; compared exercises completed to the American College of Sports Medicine (ACSM) exercise guidelines; and, assessed differences in Late Life Function and Disability Index (LLFDI)-Function Component (FC) between older adults who met and did not meet the ACSM guidelines. Descriptive statistics and Factorial ANCOVA were conducted. For cardiovascular exercise 59.3% of participants met frequency, 73.4% met intensity, and 35.9% met time. For resistance exercise, 67.2% of participants met frequency, 42.2% met intensity, and 76.6% number of repetitions. Participants who met both frequency and time for cardiovascular exercise had higher LLFDI-FC scores, as did those who met intensity and/or number of repetitions for resistance exercise. The findings provide support that older adults engaged in a slow-stream rehabilitation program can meet the ACSM exercise guidelines for community-dwelling older adults, and that meeting the guidelines improves function.

Refining items for a preference-based, amyotrophic lateral sclerosis specific, health-related quality of life scale.

Objective: The aim of this study was to refine the items of a preference-based amyotrophic lateral sclerosis health-related quality of life scale (PB-ALS HRQL scale) based on domains generated in a previous study. Methods: Survey methodology was used to assess item importance rating (IR) and independence. Median importance was calculated for each item and a rating of "very important" was required for the item to remain. Correlations were used to examine item independence. Highly correlated items (rs > 0.7) were considered for removal. Cognitive debriefing (CD) interviews, conducted by Zoom, telephone, or email based on participant preference and communication needs, were used to identify potential issues. Participants provided feedback about wording, clarity, response options, and recall period on randomly selected items. Items were considered finalized when three sequential CD participants approved the item with no revisions. Results: Thirty-four people with ALS (PALS, n = 16 females; age range 44-78 years; ALS Functional Rating Scale-Revised [ALSFRS-R] range 0-48) in Canada completed the survey; a subset of 18 PALS completed CD interviews (n = 8 female; age range 44-71 years; ALSFRS-R range 0-48). Four items were highly correlated with one or more items, were not rated as very important, or were not approved via CD and were removed. Conclusions: The final four-response option PB-ALS Scale includes eight items: recreation and leisure, mobility, interpersonal interactions and relationships, eating and swallowing, handling objects, communicating, routine activities, and mood. The next step is to translate the PB-ALS Scale into French and develop a scoring algorithm based on PALS' preferences.

Do Generic Preference-Based Measures Accurately Capture Areas of Health-Related Quality of Life Important to Individuals with Amyotrophic Lateral Sclerosis: A Content Validation Study.

OBJECTIVE: The objectives of this study were to 1) assess the content validity of generic preference-based measures (GPBMs), and (2) examine the convergent validity of the EuroQol 5 Dimension 5 Level (EQ-5D-5L), against the Patient Generated Index (PGI) in Amyotrophic Lateral Sclerosis (ALS). METHODS: Participants were recruited from 3 clinical sites across Canada. The PGI, EQ-5D-5L and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) were administered through an online or hardcopy survey and scores compared for convergent validation. Domains nominated by participants as important to their health-related quality of life were generated using the PGI, classified using the International Classification of Functioning, Disability and Health (ICF) and mapped onto GPBMs to determine content coverage. RESULTS: Fifty-two participants (N=28 female; 61.3 ± 11.6 mean age ± standard deviation (SD); 3.5 ± 2.9 mean ± SD years since diagnosis) completed this study. The top three ICF domains identified by participants were recreation and leisure, lower limb mobility, and interpersonal relationships. The Quality of Well-Being Self-Administered (QWB-SA) scale had the highest content coverage (87%) and the Health Utilities Index 3 (HUI3) had the lowest (33%). Two domains were covered by all GPBMs and no GPBM included all domains identified as important by participants. A moderate correlation coefficient of 0.52 between the PGI and EQ-5D-5L was found. CONCLUSION: The majority of GPBMs covered only approximately half of the domains important to individuals with ALS suggesting the need for an ALS specific preference-based measure to better reflect the health-related quality of life of this population.

A Clinical Decision-Making Framework for the Use of Video Gaming as a Therapeutic Modality.

Virtual reality and video gaming offer modulation of more exercise and motor learning parameters simultaneously than other modalities; however, there is a demonstrated need for resources to facilitate their effective use clinically. This article presents a conceptual framework to guide clinical-decision making for the selection, adaptation, modulation, and progression of virtual reality or gaming when used as a therapeutic exercise modality, and two cases as exemplars. This framework was developed by adapting the steps of theory derivation, whereby concepts and parent theories are brought together to describe a new structure or phenomenon of interest. Specifically, motor learning theory, integrated motor control theory, Gentile's Taxonomy of Tasks, and therapeutic exercise principles were integrated to develop this framework. It incorporates person (body segment), environmental, and task demands; each demand is comprised of realm, category, choice, and continuum parameters as motor training considerations and alternatives for decision-making. This framework: (1) provides structure to guide clinical decisions for effective and safe use of virtual reality or gaming to meet therapeutic goals and requirements, (2) is a concise and organized method to identify, document, and track the therapeutic components of protocols and client progression over time; (3) can facilitate documentation for reimbursement and communication among clinicians; and, (4) structures student learning, and (5) informs research questions and methods.