A Focus Group Study of Self-Management in Patients With Glomerular Disease.

INTRODUCTION: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. METHODS: We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. RESULTS: We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). CONCLUSION: Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.

Patient Preferences for Longer or More Frequent In-Center Hemodialysis Regimens: A Multicenter Discrete Choice Study.

RATIONALE & OBJECTIVE: Longer and more frequent hemodialysis sessions are associated with both benefits and harms. However, their relative importance to patients and how they influence acceptability for patients have not been quantified. STUDY DESIGN: Discrete-choice experiment in which a scenario followed by 12 treatment choice sets were presented to patients in conjunction with varying information about the clinical impact of the treatments offered. SETTING & PARTICIPANTS: Patients with kidney failure treated with maintenance dialysis for≥1 year in 5 UK kidney centers. PREDICTORS: Length and frequency of hemodialysis sessions and their prior reported associations with survival, quality of life, need for fluid restriction, hospitalization, and vascular access complications. OUTCOME: Selection of longer (4.5 hours) or more frequent (4 sessions per week) hemodialysis regimens versus remaining on 3 sessions per week with session lengths of 4 hours. ANALYTICAL APPROACH: Multinomial mixed effects logistic regression estimating the relative influence of different levels of the predictors on the selection of longer and more frequent dialysis, controlling for patient demographic characteristics. RESULTS: Among 183 prevalent in-center hemodialysis patients (mean age of 63.7 years, mean dialysis vintage of 4.7 years), 38.3% (70 of 183) always chose to remain on regimens of 3 sessions per week with session duration of 4 hours. Depicted associations of increasing survival and quality of life, reduced need for fluid restriction, and avoiding additional access complications were all significantly associated with choosing longer or more frequent treatment regimens. Younger age, fatigue, previous experience of vascular access complications, absence of heart failure, and shorter travel time to dialysis centers were associated with preference for 4 sessions per week. Patients expressed willingness to trade up to 2 years of life to avoid regimens of 4 sessions per week or access complications. After applying estimated treatment benefits and harms from existing literature, the fully adjusted model revealed that 27.1% would choose longer regimens delivered 3 times per week and 34.3% would choose 4 hours 4 times per week. Analogous estimates for younger fatigued patients living near their unit were 23.5% and 62.5%, respectively. LIMITATIONS: Estimates were based on stated preferences rather than observed behaviors. Predicted acceptance of regimens was derived from data on treatment benefits and harms largely sourced from observational studies. CONCLUSIONS: Predicted acceptance of longer and more frequent hemodialysis regimens substantially exceeds their use in current clinical practice. These findings underscore the need for robust data on clinical effectiveness of these more intensive regimens and more extensive consideration of patient choice in the selection of dialysis regimens.

A breakthrough series collaborative to increase patient participation with hemodialysis tasks: A stepped wedge cluster randomised controlled trial.

BACKGROUND: Compared to in-centre, home hemodialysis is associated with superior outcomes. The impact on patient experience and clinical outcomes of consistently providing the choice and training to undertake hemodialysis-related treatment tasks in the in-centre setting is unknown. METHODS: A stepped-wedge cluster randomised trial in 12 UK renal centres recruited prevalent in-centre hemodialysis patients with sites randomised into early and late participation in a 12-month breakthrough series collaborative that included data collection, learning events, Plan-Study-Do-Act cycles, and teleconferences repeated every 6 weeks, underpinned by a faculty, co-production, materials and a nursing course. The primary outcome was the proportion of patients undertaking five or more hemodialysis-related tasks or home hemodialysis. Secondary outcomes included independent hemodialysis, quality of life, symptoms, patient activation and hospitalisation. ISRCTN Registration Number 93999549. RESULTS: 586 hemodialysis patients were recruited. The proportion performing 5 or more tasks or home hemodialysis increased from 45.6% to 52.3% (205 to 244/449, difference 6.2%, 95% CI 1.4 to 11%), however after analysis by step the adjusted odds ratio for the intervention was 1.63 (95% CI 0.94 to 2.81, P = 0.08). 28.3% of patients doing less than 5 tasks at baseline performed 5 or more at the end of the study (69/244, 95% CI 22.2-34.3%, adjusted odds ratio 3.71, 95% CI 1.66-8.31). Independent or home hemodialysis increased from 7.5% to 11.6% (32 to 49/423, difference 4.0%, 95% CI 1.0-7.0), but the remaining secondary endpoints were unaffected. CONCLUSIONS: Our intervention did not increase dialysis related tasks being performed by a prevalent population of centre based patients, but there was an increase in home hemodialysis as well as an increase in tasks among patients who were doing fewer than 5 at baseline. Further studies are required that examine interventions to engage people who dialyse at centres in their own care.

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers.

BACKGROUND AND OBJECTIVES: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. DESIGN: , setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. RESULTS: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. CONCLUSIONS: Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.

Posterior reversible encephalopathy syndrome in HIV-positive patients: a case report and literature review.

We are reporting the case of a woman who was admitted acutely to our intensive care unit without any collateral history. She was diagnosed with posterior reversible encephalopathy syndrome (PRES) as a consequence of poor adherence to anti-hypertensive, anti-diabetic and anti-retroviral medications. PRES is a rare condition, which may cause cortical blindness; contrary to its name it is not always reversible. Rapid diagnosis and aggressive management of underlying causes facilitate reversibility of PRES. We also summarise the literature on patients with HIV and PRES.

Rationale and design for SHAREHD: a quality improvement collaborative to scale up Shared Haemodialysis Care for patients on centre based haemodialysis.

BACKGROUND: The study objective is to assess the effectiveness and economic impact of a structured programme to support patient involvement in centre-based haemodialysis and to understand what works for whom in what circumstances and why. It implements a program of Shared Haemodialysis Care (SHC) that aims to improve experience and outcomes for those who are treated with centre-based haemodialysis, and give more patients the confidence to dialyse independently both at centres and at home. METHODS/DESIGN: The 24 month mixed methods cohort evaluation of 600 prevalent centre based HD patients is nested within a 30 month quality improvement program that aims to scale up SHC at 12 dialysis centres across England. SHC describes an intervention where patients who receive centre-based haemodialysis are given the opportunity to learn, engage with and undertake tasks associated with their treatment. Following a 6-month set up period, a phased implementation programme is initiated across 12 dialysis units using a randomised stepped wedge design with 6 centres participating in each of 2 steps, each lasting 6 months. The intervention utilises quality improvement methodologies involving rapid tests of change to determine the most appropriate mechanisms for implementation in the context of a learning collaborative. Running parallel with the stepped wedge intervention is a mixed methods cohort evaluation that employs patient questionnaires and interviews, and will link with routinely collected data at the end of the study period. The primary outcome measure is the number of patients performing at least 5 dialysis-related tasks collected using 3 monthly questionnaires. Secondary outcomes measures include: the number of people choosing to perform home haemodialysis or dialyse independently in-centre by the end of the study period; end-user recommendation; home dialysis establishment delay; staff impact and confidence; hospitalisation; infection and health economics. DISCUSSION: The results from this study will provide evidence of impact of SHC, barriers to patient and centre level adoption and inform development of future interventions to support its implementation. TRIAL REGISTRATION: ISRCTN Number: 93999549 , (retrospectively registered 1st May 2017); NIHR Research Portfolio: 31566.

Cathasept Line Lock and Microbial Colonization of Tunneled Hemodialysis Catheters: A Multicenter Randomized Controlled Trial.

BACKGROUND: Catheter-related bloodstream infections (CRBSIs) cause morbidity and mortality in hemodialysis (HD) patients. Cathasept (tetra-sodium EDTA) solution has antimicrobial and anticoagulant activities. STUDY DESIGN: Multicenter prospective randomized controlled study. SETTING & PARTICIPANTS: 117 maintenance HD patients with confirmed uncolonized tunneled HD catheters from 4 HD centers. INTERVENTION: Patients were randomly assigned to receive Cathasept 4% locks (Cathasept group) or stayed with heparin 5,000 U/mL locks (heparin group), filled thrice weekly according to catheter lumen volume until the catheter was removed or for a maximum of 8 months. OUTCOMES: Primary outcome was clinically significant microbial colonization of the catheter, defined as a through-catheter quantitative blood culture yielding ≥ 1,000 colony-forming units/mL of bacteria or yeast. Secondary outcomes included CRBSI rate, catheter patency, and biomarkers of inflammation and anemia. MEASUREMENTS: Weekly through-catheter quantitative blood culture, high-sensitivity C-reactive protein fortnightly, and full blood count and ferritin monthly. RESULTS: Incidence rates of catheter colonization were 0.14/1,000 catheter-days in the Cathasept group and 1.08/1,000 catheter-days in the heparin group (incidence rate ratio [IRR], 0.13; 95% CI, 0.003-0.94; P=0.02). CRBSI rates were 0.28/1,000 catheter-days in the Cathasept group and 0.68/1,000 catheter days in the heparin group (IRR, 0.40; 95% CI, 0.08-2.09; P=0.3). The proportion of dialysis sessions with achieved prescribed blood flow rate was significantly lower in the Cathasept group (66.8% vs 75.3%; P<0.001), with more patients requiring thrombolytic locks or infusions to maintain catheter patency (22 vs 9; P=0.01). Mean high-sensitivity C-reactive protein level was 11.6±5.3 (SE) mg/L lower for patients in the heparin group (P=0.03). Anemia marker levels were similar in both groups. LIMITATIONS: Study was underpowered to assess effect on CRBSI, terminated early due to slow recruitment, and not double blinded. CONCLUSIONS: Cathasept significantly reduced tunneled hemodialysis catheter colonization, but the reduction in CRBSIs was not statistically significant, and it was associated with more thrombotic complications. Its safety profile was comparable to heparin lock solution.

Rare complication of a dialysis catheter insertion.

Insertion of a dialysis catheter is a very common procedure in renal medicine, which is associated with one or more complications in ∼15% of patients. Central venous catheter vascular erosion is a rare but serious complication, the incidence appears to be between 0.4 and 1% which can be difficult to diagnose, leading to increased morbidity and mortality. We report a case of a persistent left-sided superior vena cava (PLSVC) and a possible central venous catheter vascular erosion following insertion of a left-sided internal jugular dialysis catheter. We discuss the mechanisms, diagnosis and measures to limit vascular erosion and also briefly discuss PLSVC.

Delayed appearance of markers of intravascular haemolysis in a case of paroxysmal cold haemoglobinuria.

The aetiology of haemolytic disease is diverse and the diagnosis often relies on laboratory testing. We describe a case of intravascular haemolysis, which illustrates that significant intravascular haemolysis can occur in the absence of any abnormal haematological findings. Despite gross haemoglobinuria at presentation, the haemoglobin and reticulocyte counts were both within reference limits and a normal blood film was observed. Subsequently, acute tubular necrosis occurred secondary to haemolysis, and acute renal failure was evident by day 2. However, the haemoglobin decreased slowly reaching a nadir of 75 g/L on day 6 (reference interval 130-180 g/L). A diagnosis of paroxysmal cold haemoglobinuria secondary to mycoplasma infection was subsequently made. Biochemical analysis was useful in this case to confirm that the gross pigmentation in the samples received could be attributable to intravascular haemolysis.

De novo SLE after cadaveric renal transplantation.

De novo lupus nephritis in a renal transplant recipient has not been previously reported. We present a transplant recipient with long-standing insulin-dependent diabetes mellitus who presented 9 years posttransplant with hematoproteinuria and acute renal failure. New findings of positive antinuclear antibody and double-stranded deoxyribonucleic antibody and renal histology findings consistent with lupus nephritis suggest a diagnosis of de novo systemic lupus erythematosis.