"I Had to Know About It, I Had to Find It, I Had to Know How to Access it": Experiences of Access to Rehabilitation Services Among People Living with Long COVID.

Purpose: The aim of this qualitative study is to understand the need for, access to, and quality of rehabilitation services for people living with Long COVID. Little is known about the experiences of people living with Long COVID accessing rehabilitation services. Therefore, we explored health concerns leading people living with Long COVID to seek help to address functional concerns and their experiences with accessing and participating in rehabilitation. Method: Interpretive description guided exploration of participants' experiences with Long COVID rehabilitation in Alberta, Canada. Semi-structured interviews were completed with 56 participants recruited from: three publicly funded Long COVID clinics, a specialized private physiotherapy clinic, a telephone-based rehabilitation advice line, and a Workers' Compensation Board-funded Long COVID rehabilitation program. Recruitment through mass media coverage allowed us to include people who did not access rehabilitation services. Data analysis was informed by Braun and Clarke's reflexive thematic analysis. Results: Four themes were identified: (1) the burden of searching for guidance to address challenges with functioning and disability; (2) supportive relationships promote engagement in rehabilitation; (3) conditions for participation in safe rehabilitation; and (4) looking forward - provision of appropriate interventions at the right time. Conclusions: Our findings highlight the experiences of accessing rehabilitation services for people living with Long COVID. Results suggest approaches to Long COVID rehabilitation should be accessible, multi-disciplinary, flexible, and person-centred.

Objectif: étude qualitative pour comprendre les besoins en services de réadaptation des personnes qui vivent avec la COVID longue, l'accès à ces services et leur qualité. On sait peu de choses sur les expériences des personnes qui vivent avec la COVID longue et accèdent à des services de réadaptation. C'est pourquoi les auteurs ont exploré les inquiétudes qui incitent ces personnes à demander de l'aide pour répondre à leurs problèmes fonctionnels et les expériences qu'elles ont vécues en matière d'accès à la réadaptation et de participation aux services qui y sont associés. Méthodologie: exploration guidée de la description interprétative des expériences des participants qui suivent une réadaptation à cause de la COVID longue en Alberta, au Canada. Les chercheurs ont procédé à des entrevues semi-structurées auprès de 56 participants recrutés dans trois cliniques de COVID longue financées par le gouvernement, une clinique de physiothérapie spécialisée privée, une ligne téléphonique de conseils en réadaptation et un programme de réadaptation après la COVID longue remboursé par la commission des accidents de travail. Le recrutement dans les médias de masse a permis d'inclure des personnes qui n'avaient pas accédé aux services de réadaptation. L'examen des données reposait sur l'analyse thématique réflexive de Braun et Clarke. Résultats: les chercheurs ont relevé quatre thèmes : 1) le fardeau de la recherche de conseils pour répondre aux problèmes de fonctionnement et d'incapacité; 2) les relations de soutien qui favorisent la participation à la réadaptation; 3) les conditions nécessaires pour participer à une réadaptation sécuritaire et 4) pour l'avenir, la prestation d'interventions appropriées au bon moment. Conclusions: les constatations des auteurs font ressortir les expériences d'accès aux services de réadaptation chez les personnes qui vivent avec la COVID longue. Selon les résultats, les approches de réadaptation après la COVID longue devraient être accessibles, multidisciplinaires, flexibles et axées sur l'individu.

Evaluating Efficiency of a Provincial Telerehabilitation Service in Improving Access to Care During the COVID-19 Pandemic.

Scope: Early in the COVID-19 pandemic, community rehabilitation stakeholders from a provincial health system designed a novel telerehabilitation service. The service provided wayfinding and self-management advice to individuals with musculoskeletal concerns, neurological conditions, or post-COVID-19 recovery needs. This study evaluated the efficiency of the service in improving access to care. Methodology: We used multiple methods including secondary data analyses of call metrics, narrative analyses of clinical notes using artificial intelligence (AI) and machine learning (ML), and qualitative interviews. Conclusions: Interviews revealed that the telerehabilitation service had the potential to positively impact access to rehabilitation during the COVID-19 pandemic, for individuals living rurally, and for individuals on wait lists. Call metric analyses revealed that efficiency may be enhanced if call handling time was reduced. AI/ML analyses found that pain was the most frequently-mentioned keyword in clinical notes, suggesting an area for additional telerehabilitation resources to ensure efficiency.

"None of us are lying": an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID.

BACKGROUND: Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs. METHODS: Our study was informed by the Levesque et al.'s (2013) "conceptual framework of access to health care." We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed. RESULTS: Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants' Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants' attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and 'normal' results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants. CONCLUSION: With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

The use of EQ-5D-5L as a patient-reported outcome measure in evaluating community rehabilitation services in Alberta, Canada.

BACKGROUND: The purpose of this study was to describe the characteristics and health-related quality of life (HRQL) of patients accessing community rehabilitation services in Alberta, Canada, using routinely collected EQ-5D-5L data, and explore factors associated with the impact of these services. METHODS: A retrospective, longitudinal, observational design was used. Patients completed the EQ-5D-5L and demographic questions at intake and end of rehabilitation care. Change in EQ-5D-5L dimensions from intake until end of rehabilitation was examined using the Pareto Classification of Health Change. Change scores were calculated for the EQ-5D-5L index, VAS, and total sum scores. Change groups in the EQ-5D-5L index and VAS scores, were defined by minimally important differences of 0.04 and 7.0, respectively. One level change was considered important for the total sum score. Effect size of the change in index, VAS, and total sum scores was also examined. Chi-squared tests were conducted to examine whether change in EQ-5D-5L varied by age, gender, region, and having anxiety/depression at intake. RESULTS: Three service programs were examined; pulmonary rehabilitation (n = 542), group-based community exercise (n = 463), and physiotherapy for bone and joint care (n = 391). At intake, HRQL in all programs was lower than that of the general Alberta population norms and improved by end of rehabilitation. The mean (SD) change in index, VAS, and total sum scores were 0.02 (0.13), 6.0 (18.3), and - 0.5 (2.4) in pulmonary rehabilitation, 0.06 (0.13), 6.6 (18.7), - 1.2 (2.4) in community exercise, and 0.13 (0.16), 1.2 (0.9), and - 2.8 (2.8) in physiotherapy, respectively. Based on change of the index score, 24% deteriorated, 38% improved, and 38% had no change in pulmonary rehabilitation; 17% deteriorated, 51% improved, and 32% had no change in community exercise; 5% deteriorated, 72% improved, and 23% had no change in physiotherapy. Similar trends were seen in the VAS and total sum scores. Older age, urban region, and having anxiety/depression at intake were associated with positive change in EQ-5D-5L. CONCLUSIONS: The results of this study are intended to inform program/service level decisions by describing the characteristics and HRQL of patients accessing community rehabilitation, as well as the predictors of change in health status, which will help direct future program growth and service changes.

Evaluating the impact of a novel telerehabilitation service to address neurological, musculoskeletal, or coronavirus disease 2019 rehabilitation concerns during the coronavirus disease 2019 pandemic.

Introduction: A novel telerehabilitation service provides wayfinding and self-management advice to persons with neurological, musculoskeletal, or coronavirus disease 2019 related rehabilitation needs. Method: We utilized multiple methods to evaluate the impact of the service. Surveys clarified health outcomes (quality of life, self-efficacy, social support) and patient experience (telehealth usability; general experience) 3-months post-call. We analysed associations between, and within, demographics and survey responses. Secondary analyses described health care utilization during the first 6 months. Results: Sixty-eight callers completed the survey (42% response rate). Self-efficacy was significantly related to quality of life, interpersonal support and becoming productive quickly using the service. Becoming productive quickly was significantly related to quality of life. Education level was related to ethnicity. Survey respondents' satisfaction and whether they followed the therapist's recommendations were not significantly associated with demographics. Administrative data indicated there were 124 callers who visited the emergency department before, on, or after their call. The average (SD) frequency of emergency department visits before was 1.298 times (1.799) compared to 0.863 times (1.428) after. Discussion: This study offers insights into the potential impact of the telerehabilitation service amidst pandemic restrictions. Usability measurements showed that callers were satisfied, corroborating literature from pre-pandemic contexts. The satisfaction and acceptability of the service does not supplant preferences for in-person visits. The survey sample reported lower quality of life compared with the provincial population, conflicting with pre-pandemic research. Findings may be due to added stressors associated with the pandemic. Future research should include population-level comparators to better clarify impact.

Advancing Practice-Based Research among Nursing and Health Disciplines Professionals by Creating a Network of Leaders.

Representatives from various practice-based research programs have come together to establish a Canadian Practice-Based Research Network (CP-BRN). CP-BRN is a collective of healthcare leaders focused on identifying approaches and leveraging resources to support clinician-led research to advance evidence-based practice. This paper presents an overview of the development of the CP-BRN, the proceedings from the inaugural meeting of CPBRN members, and recommendations for nursing and allied health profession leaders considering establishing their own practice-based research programs. Next steps for the network are to raise awareness of its mission, expand the network membership as to grow its influence among healthcare leaders and to further advance evidence-based practice across both healthcare and academic institutions.

Exploring patient centredness, communication and shared decision-making under a new model of care: Community rehabilitation in canada.

Patient-centred care and patient engagement in healthcare and health research are widely mandated by funders, health systems and institutions. Increasingly, shared decision-making (SDM) is recognised as promoting patient-centred care. We explore this relationship by studying SDM in the context of integrating novel patient-centred policies in community rehabilitation. There is little research on SDM in rehabilitation, and less so in the critical community context. Patient co-investigators led study co-design. We aimed to describe how patients and providers experience SDM at community rehabilitation sites that adopted a novel, patient-centred Rehabilitation Model of Care (RMoC). Guided by focused ethnography, we conducted focus groups and interviews. Patient and professional participants were recruited from 10 RMoC early-adopter community rehabilitation sites. Sites varied in geography, patient population and provider disciplines. Patient and community engagement researchers used a set-collect-reflect method to document patient perspectives. Researchers captured provider perspectives using a semi-structured question guide. We completed 11 focus groups and 18 interviews (n = 45 providers, n = 17 patients). We found that most early-adopter providers spoke in a shared, patient-first language that focused on patient readiness, barriers and active listening. Congruent patient perceptions reflected inclusion in decision-making, goal setting and positive relationships. Many patients queried how care would become and remain accessible before and after community rehabilitation care respectively. Remaining connected while in the community was described as important to patients. Providers identified barriers like time, team dynamics and lack of clarity on the RMoC aims, which challenged the initiative's long-term sustainability. Policy innovations can promote SDM and communication through multiple strategies and training to facilitate candid, encouraging conversations. Sustainability of SDM gains is paramount. Most providers moved beyond tokenistic engagement, but competing responsibilities and team member resistance could thwart continuity. Further research is needed to empirically assess respectful and compassionate communication and SDM in community rehabilitation long term.

Implementation of EQ-5D-5L as a routine outcome measure in Community Outpatient and Specialized Rehabilitation Services.

Rehabilitation is a person-centred approach that optimizes functioning to reduce impairments in individuals with illness, injury or disability. Patient-reported outcome measures (PROMs) have a role in rehabilitation to inform clinical practice, enhance patient-centered care, support health services programming, direct performance measurement, and contribute to quality improvement. A Canadian provincial health system implemented a Rehabilitation Model of Care that provides a real-world perspective on the adoption of a standardized PROM, the EuroQol EQ-5D-5L, in the community rehabilitation setting. This article will provide an overview of PROMs implementation in the community rehabilitation context, and discuss key facilitators and challenges to implementation within the 18 early adopter sites and with the spread and scale to 152 urban and rural sites. A change management approach, contextualized local coaching and strong leadership support were facilitators in the initial phases of implementation. Adequate resources and infrastructure from technological platforms for electronic data capture and visualization were assets in addition to clinical teams that had existing strong quality improvement cultures to collect PROMS in existing workflows. Challenges to implementation include the clinical relevance of the PROM, difficulty with contextualization to suit diverse clinical and programmatic teams, and the need for further knowledge sharing activities to build readiness for adoption. The implementation of PROMs in community rehabilitation has added value at the clinical (micro), programmatic (meso) and health system level (macro). Clinically, it has promoted the importance of incorporating the patients' voice into outcome measurement. At the program level, the cultivation of a data informed learning community was fostered as teams make improvements and use data to inform future program growth or service changes. Finally, at the health system level, data visualization promotes transparency and accountability with performance across the province and the standardized use of the EQ-5D-5L provides a consistent language to promote measurement throughout the health system.

Evaluating Community-Facing Virtual Modalities to Support Complex Neurological Populations During the COVID-19 Pandemic: Protocol for a Mixed Methods Study.

BACKGROUND: The COVID-19 pandemic and concomitant governmental responses have created the need for innovative and collaborative approaches to deliver services, especially for populations that have been inequitably affected. In Alberta, Canada, two novel approaches were created in Spring 2020 to remotely support patients with complex neurological conditions and rehabilitation needs. The first approach is a telehealth service that provides wayfinding and self-management advice to Albertans with physical concerns related to existing neurological or musculoskeletal conditions or post-COVID-19 recovery needs. The second approach is a webinar series aimed at supporting self-management and social connectedness of individuals living with spinal cord injury. OBJECTIVE: The study aims to evaluate the short- and long-term impacts and sustainability of two virtual modalities (telehealth initiative called Rehabilitation Advice Line [RAL] and webinar series called Alberta Spinal Cord Injury Community Interactive Learning Seminars [AB-SCILS]) aimed at advancing self-management, connectedness, and rehabilitation needs during the COVID-19 pandemic and beyond. METHODS: We will use a mixed-methods evaluation approach. Evaluation of the approaches will include one-on-one semistructured interviews and surveys. The evaluation of the telehealth initiative will include secondary data analyses and analysis of call data using artificial intelligence. The evaluation of the webinar series will include analysis of poll questions collected during the webinars and YouTube analytics data. RESULTS: The proposed study describes unique pandemic virtual modalities and our approaches to evaluating them to ensure effectiveness and sustainability. Implementing and evaluating these virtual modalities synchronously allows for the building of knowledge on the complementarity of these methods. At the time of submission, we have completed qualitative and quantitative data collection for the telehealth evaluation. For the webinar series, so far, we have distributed the evaluation survey following three webinars and have conducted five attendee interviews. CONCLUSIONS: Understanding the impact and sustainability of the proposed telehealth modalities is important. The results of the evaluation will provide data that can be actioned and serve to improve other telehealth modalities in the future, since health systems need this information to make decisions on resource allocation, especially in an uncertain pandemic climate. Evaluating the RAL and AB-SCILS to ensure their effectiveness demonstrates that Alberta Health Services and the health system care about ensuring the best practice even after a shift to primarily virtual care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/28267.

Implementation of a novel rehabilitation model of care across Alberta, Canada: a focused ethnography.

BACKGROUND: In 2017, a provincial health-system released a Rehabilitation Model of Care (RMoC) to promote patient-centred care, provincial standardisation and data-driven innovation. Eighteen early-adopter community-rehabilitation teams implemented the RMoC using a 1.5-year-long Innovation Learning Collaborative (in-person learning sessions; balanced scorecards). More research is required on developing, implementing and evaluating models of care. We aimed to explore experiences of early-adopter providers and provincial consultants involved in the community-rehabilitation RMoC implementation in Alberta, Canada. METHODS: Using focused ethnography, we used focus groups (or interviews for feasibility/confidentiality) and aggregate, site-level data analysis of RMoC standardised metrics. Purposive sampling ensured representation across geography, service types and patient populations. Team-specific focus groups were onsite and led by a researcher-moderator and cofacilitator. A semistructured question guide promoted discussions on interesting/challenging occurrences; perceptions of RMoC impact and perceptions of successful implementation. Focus groups and interviews were audio-recorded and transcribed alongside field notes. Data collection and analysis were concurrent to saturation. Transcripts coding involves collapsing similar ideas into themes, with intertheme relationships identified. Rigour tactics included negative case analysis, thick description and audit trail. RESULTS: We completed 11 focus groups and seven interviews (03/2018 to 01/2019) (n=45). Participants were 89.6% women, mostly Canadian trained and represented diverse rehabilitation professions. The implementation experience involved navigating emotions, operating among dynamics and integrating the RMoC details. Confident, satisfied early-adopter teams demonstrated traits including strong coping strategies; management support and being opportunistic and candid about failure. Teams faced common challenges (eg, emotions of change; delayed data access and lack of efficient, memorable communication across team and site). Implementation success targeted patient, team and system levels. CONCLUSIONS: We recommend training priorities for future teams including evaluation training for novice teams; timelines for stepwise implementation; on-site, in-person time with a facilitator and full-team present and prolonged facilitated introductions between similar teams for long-term mentorship.

Case Report: Utilizing AI and NLP to Assist with Healthcare and Rehabilitation During the COVID-19 Pandemic.

The COVID-19 pandemic has profoundly affected healthcare systems and healthcare delivery worldwide. Policy makers are utilizing social distancing and isolation policies to reduce the risk of transmission and spread of COVID-19, while the research, development, and testing of antiviral treatments and vaccines are ongoing. As part of these isolation policies, in-person healthcare delivery has been reduced, or eliminated, to avoid the risk of COVID-19 infection in high-risk and vulnerable populations, particularly those with comorbidities. Clinicians, occupational therapists, and physiotherapists have traditionally relied on in-person diagnosis and treatment of acute and chronic musculoskeletal (MSK) and neurological conditions and illnesses. The assessment and rehabilitation of persons with acute and chronic conditions has, therefore, been particularly impacted during the pandemic. This article presents a perspective on how Artificial Intelligence and Machine Learning (AI/ML) technologies, such as Natural Language Processing (NLP), can be used to assist with assessment and rehabilitation for acute and chronic conditions.

Measuring shared decision-making and collaborative goal setting in community rehabilitation: a focused ethnography using cross-sectional surveys in Canada.

OBJECTIVE: To describe and measure the shared decision-making (SDM) experience, including goal-setting experiences, from the perspective of patients and providers in diverse community-rehabilitation settings. DESIGN: Prospective, longitudinal surveys. SETTING: 13 primary level-of-care community-rehabilitation sites in diverse areas varying in geography, patient population and provider discipline341 adult, English-speaking patient-participants, and 66 provider-participants. MEASURES: Alberta Shared decision-maKing Measurement Instrument (dyadic tool measuring SDM), WatLX (outpatient rehabilitation experience) and demographic questionnaire. Survey packages distributed at two timepoints (T0=recruitment; T1=3 months later). RESULTS: We found that among 341 patient-provider dyads, 26.4% agreed that the appointment at recruitment involved high-quality SDM. Patient perceptions of goal-setting suggested that 19.6% of patients did not set a goal for their care, and only 11.4% set goals in functional language that tied directly to an activity/role/responsibility that was meaningful to their life. Better SDM was clinically associated with higher total family income (p=0.045). CONCLUSIONS: These findings provide evidence for the importance of SDM and goal setting in community rehabilitation. Among patients, lower ratings of SDM corresponded with less recognition of their preferences. Actionable strategies include supporting financially vulnerable patients in realising SDM through training of providers to make extra space for such patients to share their preferences and better preparing patients to articulate their preferences. We recommend more research into strategies that advance highly functional goal setting with patients, and that lessen survey ceiling effects.

Experiences of shared decision-making in community rehabilitation: a focused ethnography.

BACKGROUND: Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. METHODS: We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers). RESULTS: We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient's perceived assertiveness, lack of capacity, and level of deference. CONCLUSIONS: We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

Functional outcome in delusional Alzheimer disease patients. A systematic review.

BACKGROUND: In spite of the prevalence of delusions in Alzheimer's disease (AD) and their association with poor outcomes, there has been little study of the impact of delusions on real-world functioning. METHOD: A number of databases, including Psychlit and Medline, were searched using the keywords: delusions, functional outcomes, activities of daily living, dementia, and Alzheimer's disease. Studies were included in the review if they were in English, restricted to patients with AD, and addressed delusions and function. RESULTS: The review yielded a total of 6 studies, 3 of which showed a correlation between delusions and real-world functioning and 3 of which did not. CONCLUSION: A critical analysis of the existing studies suggests that there may be an association between delusions and impaired real-world functioning. We believe that 2 of the 3 negative studies did not show an association due to issues relating to study design and the use of measures insensitive to executive impairment. This review highlights the future need for more scientifically rigorous studies to clarify this association, so as to ultimately improve treatment outcomes for patients.