14 research outputs found

    Developing “PEP”: A Personalized, Web-Supported Energy Conservation Education Program for People on Chronic Dialysis Therapy with Fatigue

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    Background: Fatigue is a common and disabling symptom experienced by people with end-stage renal disease on chronic dialysis therapy (CDT). Energy conservation education (ECE) is an approach to fatigue management that provides people with energy-saving strategies, to reduce their fatigue and improve their life participation. ECE has yet to be trialed in the CDT population. Objective: To explore the potential for energy conservation education to improve fatigue and life participation outcomes in people on CDT. Methods: A three-step process was undertaken: 1. A scoping review was conducted to investigate what is known about energy conservation education in people with chronic diseases who experience fatigue. 2. The Word Health Organization framework was used to develop an ECE program, tailored specifically to meet the needs of people on CDT. Feedback on the program was collected via key informant interviews and usability testing, to inform program revisions. 3. Preliminary efficacy testing was conducted using a mixed-methods sequential explanatory design, including a single-case, tri-phasic, time-series study with four replications, and qualitative post-intervention interviews. Results: The majority of evidence on ECE in people with chronic diseases focused on a specific, group-based ECE program in people with MS. There was a dearth of evidence to demonstrate positive effects of ECE on life participation outcomes across chronic disease populations, and a lack of programs that would be feasible for people on CDT. A personalized, web-supported ECE program (The “PEP” Program) was therefore created to meet the CDT population’s key needs. Key informant interviews suggested the program was perceived positively, and usability testing found people on CDT could complete the program independently. Efficacy testing revealed consistently positive changes in fatigue and life participation associated with the program in three of five participants, while all participants reported experiencing benefits during the qualitative interviews. Conclusion: The PEP program has the potential to improve fatigue-related outcomes in people on CDT. Further robust testing of the program is warranted.Ph.D

    Characterizing Interventions Used to Promote Life Participation in Adults on Peritoneal Dialysis Therapy: A Scoping Review

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    Background: Living with kidney failure can interfere with life participation (ie, participation in valued life activities). Life participation has recently been identified as a top-priority health outcome of people on peritoneal dialysis therapy, but it is a relatively unexplored topic in peritoneal dialysis. Objective: The objective is to describe the interventions that have been used to promote life participation in the peritoneal dialysis population and highlight research gaps warranting further investigation. Design: A scoping review was conducted according to the Joanna Briggs Institute methodology. Setting: Six electronic databases (MEDLINE [OVID], EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, CINAHL Plus, SCOPUS) were searched. Patients: Adults aged 18+ years on peritoneal dialysis therapy. Measurements: Any dedicated scale or subscale that measured life participation as an isolated outcome. Methods: Title/abstract screening was completed independently after adequate inter-rater reliability (kappa > 0.8) was achieved among reviewers. Full-text review and data extraction were conducted in duplicate. Extracted data were analyzed using counts, percentages, and narrative synthesis to describe patterns in the literature. Results: After identifying 13 874 results, 17 studies met eligibility criteria. Eight studies were conducted within the past 5 years, with China as the most common study location. Only 2 studies investigated life participation as a primary study outcome. Eight studies targeted personal-physical barriers to life participation, 8 targeted multiple barriers, and 1 targeted an environmental-institutional barrier. Life participation was assessed within a subdomain of a broader quality of life assessment (The Kidney Disease Quality of Life [KDQOL]-36 or the 36-Item Short-Form Health Survey [SF-36]) in 11 studies. The majority of assessments captured life participation in all major domains of participation (self-care, work, and leisure). Limitations: Eligibility screening at title/abstract stage was not performed in duplicate; articles not available in English were excluded. Conclusions: Life participation has infrequently been prioritized as a health outcome in peritoneal dialysis (PD). Interventions have been narrow in focus given the range of challenges faced by people on PD and the holistic approaches used in other clinical populations. Future research should prioritize life participation as a key health outcome in PD and investigate the impact of interventions that address cognitive, affective, and environmental barriers to participation

    Introduction to the Compendium

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    Translational research in kidney transplantation and the role of patient engagement

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    Abstract Background Translational research is an evolving discipline that is intended to bridge the gaps between basic science research, clinical research, and implementation in clinical practice. It is a fluid, multidirectional process that requires strong interdisciplinary collaboration to produce research that is relevant to end-users. Purpose of this review This review summarizes current perspectives on translational research and outlines its relevance and importance to kidney transplantation research. Sources of information Sources of information used for this review include published reports, articles, and research funding websites. Findings Tissue typing is used as an in-depth example of how translational research has been applied in the field of kidney transplant medicine, and how it has resulted in successful implementation of diagnostic and management options for sensitized individuals undergoing kidney transplantation. The value of actively involving kidney transplant stakeholders (patients, caregivers, and clinicians) in setting research priorities and determining relevant outcomes for future investigation is also discussed. Limitations This is a narrative review of the literature which has been partly influenced by the perspectives and experiences of its authors. Implications Translational and patient-oriented research practices should be incorporated into future research endeavours in the field of kidney transplantation in order to create beneficial change in clinical practice and improve patient outcomes. What was known before Translational research which engages patients in the investigative process can enhance the likelihood that medical discoveries will have a meaningful impact at the bedside. What this adds This article applies current perspectives on translational research and patient engagement to the field of kidney transplantation, illustrating how these approaches have led to significant advancements in the field. It provides further justification for deliberate, targeted efforts to cross-collaborate and incorporate the patient voice into kidney transplant research

    Translational research in kidney transplantation and the role of patient engagement

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    Abstract Background Translational research is an evolving discipline that is intended to bridge the gaps between basic science research, clinical research, and implementation in clinical practice. It is a fluid, multidirectional process that requires strong interdisciplinary collaboration to produce research that is relevant to end-users. Purpose of this review This review summarizes current perspectives on translational research and outlines its relevance and importance to kidney transplantation research. Sources of information Sources of information used for this review include published reports, articles, and research funding websites. Findings Tissue typing is used as an in-depth example of how translational research has been applied in the field of kidney transplant medicine, and how it has resulted in successful implementation of diagnostic and management options for sensitized individuals undergoing kidney transplantation. The value of actively involving kidney transplant stakeholders (patients, caregivers, and clinicians) in setting research priorities and determining relevant outcomes for future investigation is also discussed. Limitations This is a narrative review of the literature which has been partly influenced by the perspectives and experiences of its authors. Implications Translational and patient-oriented research practices should be incorporated into future research endeavours in the field of kidney transplantation in order to create beneficial change in clinical practice and improve patient outcomes. What was known before Translational research which engages patients in the investigative process can enhance the likelihood that medical discoveries will have a meaningful impact at the bedside. What this adds This article applies current perspectives on translational research and patient engagement to the field of kidney transplantation, illustrating how these approaches have led to significant advancements in the field. It provides further justification for deliberate, targeted efforts to cross-collaborate and incorporate the patient voice into kidney transplant research

    A Longitudinal Study Examining the Change in Functional Independence Over Time in Elderly Individuals With a Functioning Kidney Transplant

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    Background: Functional disability is defined as the need for assistance with self-care tasks. Objective: To document changes in functional status over time among older prevalent renal transplant recipients. Design: Single center, prospective, follow-up study. Setting: Single center, tertiary care transplant center. Patients: Patients, with a functioning kidney transplant, aged 65 years or older who underwent assessment of functional status approximately 12 months previously. Measurements: Validated tools used included Barthel Index, the Lawton-Brody Scale of Instrumental Activities of Daily Living, the Timed Up and Go test, the Veterans Specific Activity Questionnaire, the Mini-Cog, and dynamometer handgrip strength. Methods: Outpatient assessment by a trained observer. Results: Of the 82 patients previously studied, 64 (78%) patients participated in the follow-up study (mean age 70.5 ± 4.4 years, 58% male, 55% diabetic). Among those completing functional status measures, 32 (50%) had functional disability at baseline. Over the 1-year period, 11 (17%) of these patients experienced progressive functional decline, 6 (9%) exhibited no change, and 15 (23%) had functional recovery. Eleven patients (17%) initially independent, developed new-onset disability. One of the strongest predictors of progressive functional decline was having 1 or more falls in the previous year. Limitations: Assessments were performed only on 2 occasions separated by approximately 1 year. Conclusions: Fluctuations in disability states are common among older adults living with renal transplants. Episodes of functional disability may place individuals at higher risk of persistent and/or progressive disability

    A Systematic Review of the CO-OP Approach for Children and Adults With Developmental Coordination Disorder

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    Sabine Vincon - ORCID: 0000-0002-1406-975X https://orcid.org/0000-0002-1406-975XItem is not available in this repository.Purpose of Review Support for the Cognitive Orientation to daily Occupational Performance (CO-OP) Approach exists, but its specific evidence base for children and adults with developmental coordination disorder (DCD) is unclear. Accordingly, the objective of this study was to synthesize and critically assess the evidence regarding the use of the CO-OP approach with children and adults with DCD. A systematic review of four health-related databases was conducted to identify studies, published from 1998 to 2023, which reported on the effectiveness of the CO-OP approach or explored its components. Following data extraction and critical appraisal, the strength of the body of evidence for the outcomes extracted was assessed, and a meta-analysis of three of the studies was conducted. Recent Findings Thirty-one articles were selected. Findings consistently support CO-OP’s effectiveness with children having DCD, yielding positive outcomes for specific measures. However, characteristics of identified studies highlight the need for more rigorous research to bolster confidence in the evidence base. Summary This systematic review serves as a compelling call for an extended and diverse body of research aimed at deepening our understanding of the CO-OP approach. Exploration of its effectiveness across the lifespan, its adaptability, and its theoretical foundations is essential.https://doi.org/10.1007/s40474-023-00290-8aheadofprintaheadofprin

    Cognitive interventions for adults with chronic kidney disease: protocol for a scoping review

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    Abstract Background Cognitive impairment is a common and frequently under-recognized complication of chronic kidney disease (CKD). Although there is extensive literature on cognitive interventions that can ameliorate cognitive impairment or associated negative outcomes in the general literature, the breadth and characteristics of cognitive interventions that have been studied in people with CKD are currently unclear. The objective of this scoping review is to identify and describe the literature on cognitive interventions for adults with CKD, including end-stage kidney disease (ESKD). Methods A scoping review following Joanna Briggs Institute methodology will be conducted. With assistance from an information specialist, we will search 5 electronic databases (MEDLINE [OVID], EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and CINAHL Plus) using search terms that represent the target population (CKD) and concept (cognition), and conduct backward citation searching for additional literature. Eligible sources will be primary research studies (quantitative or qualitative) that investigate any intervention targeting cognition in adults (≥ 18 years) with CKD or ESKD, including those treated with dialysis. We will extract data about characteristics of interventions (e.g., type, underlying theory, design, location, and provider), populations (e.g., stage of CKD, age, sex, and type of cognitive impairment), and studies (e.g., authors, location, design, and reported findings). Article screening and data extraction will be performed by two to three reviewers. Data will be analyzed using descriptive statistics and narrative syntheses to characterize the literature on cognitive interventions for people with CKD. Discussion This study will provide a comprehensive overview of the cognitive interventions that have been studied for people with CKD. It will help identify research gaps within this population (e.g., types of interventions that have yet to be investigated; best practices in cognition research that have not been implemented) and inform the direction of future research in this field

    2017_Suppl_2_Assessment_Tools – Supplemental material for A Longitudinal Study Examining the Change in Functional Independence Over Time in Elderly Individuals With a Functioning Kidney Transplant

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    <p>Supplemental material, 2017_Suppl_2_Assessment_Tools for A Longitudinal Study Examining the Change in Functional Independence Over Time in Elderly Individuals With a Functioning Kidney Transplant by Kevin Yau, Janine F. Farragher, S. Joseph Kim, Olusegun Famure and Sarbjit V. Jassal in Canadian Journal of Kidney Health and Disease</p

    2017_Suppl_1yr_transplant_yau_r1_Table_2 – Supplemental material for A Longitudinal Study Examining the Change in Functional Independence Over Time in Elderly Individuals With a Functioning Kidney Transplant

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    <p>Supplemental material, 2017_Suppl_1yr_transplant_yau_r1_Table_2 for A Longitudinal Study Examining the Change in Functional Independence Over Time in Elderly Individuals With a Functioning Kidney Transplant by Kevin Yau, Janine F. Farragher, S. Joseph Kim, Olusegun Famure and Sarbjit V. Jassal in Canadian Journal of Kidney Health and Disease</p
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