Objective Self‐management has been proposed as a strategy to help cancer patients optimize their health and well‐being during survivorship. Previous reviews have shown variable effects of self‐management on outcomes. The theoretical basis and psychoeducational components of these interventions have not been evaluated in detail. We aimed to evaluate the evidence for self‐management and provide a description of the components of these interventions. Methods We conducted a systematic review of self‐management interventions for adults who had completed primary cancer treatment by searching MEDLINE, EMBASE, PsychINFO, CINAHL, Scopus, Cochrane Database of Systematic Reviews, National Institutes of Health Clinical Trials Registry, and Cochrane CENTRAL Registry of Controlled Trials. We included experimental and quasiexperimental designs. Data synthesis included narrative and tabular summary of results; heterogeneity of interventions and outcomes precluded meta‐analysis. Study quality was evaluated using the Cochrane risk of bias tool or the risk of bias of nonrandomized studies tool. Results Forty‐one studies published between 1994 and 29 March 2018 were included. Studies were predominantly randomized controlled trials and targeted to breast cancer survivors. A variety of intervention designs, psychoeducational components, and outcomes were identified. Less than 50% of the studies included a theoretical framework. There was variability of effects across most outcomes. Risk of bias could not be fully assessed. Conclusions There are limitations in the design and research on self‐management interventions for cancer survivors that hinder their translation into clinical practice. Further research is needed to understand if these interventions are an important type of support for cancer survivors.
Background: Electronic health (e-health) tools may support patients' self-management of chronic kidney disease. We aimed to identify preferences of patients with chronic kidney disease, caregivers and health care providers regarding content and features for an e-health tool to support chronic kidney disease self-management. Methods: A patient-oriented research approach was taken, with 6 patient partners (5 patients and 1 caregiver) involved in study design, data collection and review of results. Patients, caregivers and clinicians from across Canada participated in a 1-day consensus workshop in June 2018. Using personas (fictional characters) and a cumulative voting technique, they identified preferences for content for 8 predetermined topics (understanding chronic kidney disease, diet, finances, medication, symptoms, travel, mental and physical health, work/school) and features for an e-health tool. Results: There were 24 participants, including 11 patients and 6 caregivers, from across Canada. The following content suggestions were ranked the highest: basic information about kidneys, chronic kidney disease and disease progression; reliable information on diet requirements for chronic kidney disease and comorbidities, renal-friendly foods; affordability of medication, equipment, food, financial resources and planning; common medications, adverse effects, indications, cost and coverage; symptom types and management; travel limitations, insurance, access to health care, travel checklists; screening and supports to address mental health, cultural sensitivity, adjusting to new normal; and support to help integrate at work/school, restrictions. Preferred features included visuals, the ability to enter and track health information and interact with health care providers, "on-the-go" access, links to resources and access to personal health information. Interpretation: A consensus workshop developed around personas was successful for identifying detailed subject matter for 8 predetermined topic areas, as well as preferred features to consider in the codevelopment of a chronic kidney disease self-management e-health tool. The use of personas could be applied to other applications in patient-oriented research exploring patient preferences and needs in order to improve care and relevant outcomes.
♦ Background: Older in-center hemodialysis patients have a high burden of functional disability. However, little is known about patients on home chronic peritoneal dialysis (PD). As patients opting for home dialysis are expected to play a greater role in their own dialysis care, we hypothesized that a relatively low number of PD patients would require help with basic self-care tasks (ADL) and instrumental activities of daily living (IADL). ♦ Methods: We used a cross-sectional study design to measure the proportion of patients aged 65 years and older undergoing outpatient PD who needed help with day-to-day activities. Patients living in nursing homes were excluded from the study. Functional dependence in ADL and IADL tasks were measured by the Barthel and Lawton Scales. Physical performance measures used included the timed up-and-go (TUG) test, chair stands and Folstein mini-mental score (MMSE).♦ Results: A total of 74 of 76 (97%) eligible PD patients participated. Patients had a mean age of 76.2 ± 7.5 years. Thirty-six percent had impaired MMSE scores, 69% were unable to stand from a chair without the use of their arms and 51% had abnormal TUG scores. Only 8 patients (11%) were fully independent for both ADL and IADL activities. Dependence in one or more ADL activity was reported by 64% of participants, while 89% reported dependence in one or more IADL. ♦ Conclusions: Impaired physical and functional performance is common in older patients maintained on PD. Collaborative geriatric-renal programs may be beneficial within the dialysis community.
Background Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those who care for them. Self-management has been shown to slow CKD progression and improve the quality of life of individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed, web-based tool for CKD self-management that can be individualized to a patient’s unique situation, priorities, and preferences. We addressed this gap using an integrated knowledge translation method and patient engagement principles. Objective The aim of this study is to conduct systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (nondialysis and nontransplant) and their caregivers to enhance self-management support. Methods A multistep, iterative system development cycle was used to co-design and test the My Kidneys My Health prototype. The 3-step process included creating website features and content using 2 sequential focus groups with patients with CKD and caregivers, heuristic testing using the 10 heuristic principles by Nielsen, and usability testing through in-person 60-minute interviews with patients with CKD and their caregivers. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study. Results In step 1, 18 participants (14 patients and 4 caregivers) attended one of the 2 sequential focus groups. The participants provided specific suggestions for simplifying navigation as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. A total of 5 reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Furthermore, 5 participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean system usability score of 90 out of 100. Conclusions The My Kidneys My Health prototype is a systematically developed, multifaceted, web-based CKD self-management support tool guided by the theory and preferences of patients with CKD and their caregivers. The website is user friendly and provides features that improve user experience by tailoring the content and resources to their needs. A feasibility study will provide insights into the acceptability of and engagement with the prototype and identify preliminary patient-reported outcomes (eg, self-efficacy) as well as potential factors related to implementation. This work is relevant given the shift to virtual care during the current pandemic times and provides patients with support when in-person care is restricted.
Background and objectives More than 40% of elderly hemodialysis patients experience one or more accidental falls within a 1-year period. Such falls are associated with higher mortality. The objectives of this study were to assess whether falls are also common in elderly patients established on peritoneal dialysis and evaluate if patients with falls have a higher risk of mortality than patients who do not experience a fall.Design, setting, participants, & measurements Using a prospective cohort study design, patients ages$65 years on chronic peritoneal dialysis from April 2002 to April 2003 at the University Health Network were recruited. Patients were followed biweekly, and falls occurring within the first 15 months were recorded. Outcome data were collected until death, study end (July 31, 2012), transplantation, or transfer to another dialysis center.Results Seventy-four of seventy-six potential patients were recruited, assessed at baseline, and followed biweekly for falls; 40 of 74 (54%) peritoneal dialysis patients experienced 89 falls (adjusted mean fall rate, 1.7 falls per patient-year; 95% confidence interval, 1.0 to 2.7). Patients with falls were more likely to have had previous falls, be more recently initiated onto dialysis, be men, be older, and have higher comorbidity. Twenty-eight patients died during the follow-up period. After adjustment for known risk factors, each successive fall was associated with a 1.62-fold higher mortality (hazard ratio, 1.62; 95% confidence interval, 1.29 to 2.02; P,0.001).Conclusions Accidental falls are common in the peritoneal dialysis population and often go unrecognized. Falls were associated with higher mortality risk. Because fall interventions are effective in other populations, screening peritoneal dialysis patients for falls may be a simple measure of clinical importance.
Dialysis is offered to patients with end-stage renal disease as a life-sustaining therapy. However, studies have shown that elderly patients experience high rates of functional disability, hospitalization, institutionalization, and mortality on chronic dialysis therapy, and that the initiation of dialysis is in fact associated with an acceleration in functional decline. These findings have sparked debate about the utility of dialysis for elderly renal patients. In this article, it is proposed that geriatric rehabilitation can prevent, reverse or delay the onset of functional disability and associated adverse outcomes in older dialysis patients, and thus should be incorporated routinely into standard geriatric dialysis care. We outline the causes of disability in elderly dialysis patients, and demonstrate the potential impact of rehabilitation using a case scenario. Models of rehabilitation that have been shown to be effective in improving outcomes for elderly renal and nonrenal populations, including inpatient rehabilitation, exercise training, falls prevention, and home-based models, are reviewed.
Purpose of review: Uremic pruritus is a highly prevalent and debilitating symptom in patients with chronic kidney disease (CKD) and end-stage kidney disease (ESKD). The purpose of this review is to examine current evidence on the mechanisms and treatments of pruritus in CKD and highlight promising areas for future research. Sources of information: Published literature, including randomized controlled trials, cohort studies, case reports, and review articles, was searched for evidence pertaining to the pathophysiology and treatment of uremic pruritus. Methods: A comprehensive narrative review was conducted to explore the molecular mechanisms underlying uremic pruritus, as well as the evidence (or lack thereof) supporting pharmacological and nonpharmacological treatments for uremic pruritus. The potential role of patient sex in the pathophysiology and management of uremic pruritus is also discussed. Key findings: The pathophysiology of uremic pruritus involves a complex interplay of uremic toxins, systemic inflammation, mast cell activation, and imbalance of opioid receptors. Classic treatment strategies for uremic pruritus include optimization of dialysis parameters, amelioration of CKD-related mineral and bone disease, topical emollients and analgesics, antihistamines, the anticonvulsant medications gabapentin and pregabalin, and ultraviolet light B (UV-B) phototherapy. Strong data to support many of these classical treatments for uremic pruritus are limited. Newly evolving treatment approaches for uremic pruritus include opioid receptor modulators, neurokinin-1 inhibitors, and cannabinoids. Further studies regarding their efficacy, pharmacodynamics, and safety in the CKD and ESKD population are needed before these agents are accepted into widespread use. Additional nonpharmacological strategies aimed at treating uremic pruritus include psychotherapy, acupuncture, omega-3 fatty acids, and exercise. Finally, sex differences may exist regarding uremic pruritus, but studies directly addressing sex-specific mechanisms of uremic pruritus remain absent. Limitations: High-quality evidence in the management of uremic pruritus remains lacking. Most recommendations are based on expert opinion or studies involving small numbers of patients. In addition, our understanding of the pathophysiological mechanisms behind uremic pruritus is incomplete and continues to evolve over time. Implications: Uremic pruritus is a common symptom which reduces quality of life in CKD and ESKD. The identification of novel targeted treatment approaches may ease the burden of uremic pruritus in the future.
♦ Background: Accidental falls are common in the hemodialysis (HD) population. The high fall rate has been attributed to a combination of aging, kidney disease-related morbidity, and HD treatment-related hazards. We hypothesized that patients maintained on peritoneal dialysis (PD) would have fewer falls than those on chronic HD. The objective of this study was to compare the falls risk between cohorts of elderly patients maintained on HD and PD, using prospective data from a large academic dialysis facility.
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