Assessment of epidemiology and outcomes of adult patients with kidney-limited thrombotic microangiopathies.

Thrombotic microangiopathies (TMA) are usually associated with hematological features (RH-TMA). The epidemiology of TMA limited to kidneys (RL-TMA) is unclear Therefore, patients with TMA and native kidney biopsies were identified during 2009-2022 in 20 French hospitals and results evaluated. RL-TMA was present in 341/757 (45%) patients and associated with lower creatinine levels (median 184 vs 346 µmol/L) than RH-TMA. RL-TMA resulted from virtually all identified causes, more frequently from anti-VEGF treatment and hematological malignancies but less frequently from shigatoxin-associated hemolytic uremic syndrome (HUS), systemic sclerosis, gemcitabine and bacterial infection, and even less frequently when three or more causes/triggers were combined (RL-TMA: 5%; RH-TMA: 12%). RL-TMA was associated with significantly lower major cardiovascular events (10% vs 20%), kidney replacement therapy (23% vs 43%) and death (12% vs 20%) than RH-TMA during follow-up (median 28 months). Atypical HUS (aHUS) was found in 326 patients (RL-TMA: 43%, RH-TMA: 44%). Among the 69 patients with proven complement-mediated aHUS, eculizumab (anti-C5 therapy) was used in 43 (62%) (RL-TMA: 35%; RH-TMA: 71%). Among the 257 other patients with aHUS, including 51% with RL-TMA, eculizumab was used in 29 but with unclear effects of this treatment. Thus, RL-TMA represents a very high proportion of patients with TMA and results from virtually all known causes of TMA and includes 25% of patients with complement-mediated aHUS. Adverse outcomes of RL-TMA are lower compared to RH-TMA but remain significant. Anti-C5 therapy was rarely used in RL-TMA, even in proven complement-mediated aHUS, and its effects remain to be assessed.

Effect of comorbidities on healthcare expenditures for patients on kidney replacement therapy considering the treatment modality and duration in a French cohort.

End-stage kidney disease (ESKD) is associated with a substantial economic burden. In France, the cost of care for such patients represents 2.5% of the total French healthcare expenditures but serves less than 1% of the population. These patients' healthcare expenditures are high because of the specialized and complex treatment needed as well as the presence of multiple comorbidities. This study aims to describe and assess the effect of comorbidities on healthcare expenditures (direct medical cost and non-medical costs including transportation and compensatory allowances) for patients with ESKD in France while considering the modality and duration of renal replacement therapy (RRT). This study included adults who started RRT for the first time between 2012 and 2014 in France and were followed for 5 years. Generalized linear models were built to predict mean monthly cost (MMC) by integrating first the time duration in the cohort, then patient characteristics and finally the duration of use of each treatment modalities. Comorbidities with the highest effect on MMC were inability to walk (+ 1435€), active cancer (+ 593€), HIV positivity (+ 507€) and diabetes (+ 396€). These effects vary according to age or treatment modalities. This study confirms the importance of considering patient characteristics, comorbidities and type of RRT when assessing healthcare expenditures for patients with ESKD.

Assessment of hypertension in kidney transplantation by ambulatory blood pressure monitoring: a systematic review and meta-analysis.

BACKGROUND: Hypertension (HTN) is common following renal transplantation and it is associated with adverse effects on cardiovascular (CV) and graft health. Ambulatory blood pressure monitoring (ABPM) is the preferred method to characterize blood pressure (BP) status, since HTN misclassification by office BP (OBP) is quite common in this population. We performed a systematic review and meta-analysis aimed at determining the clinical utility of 24-h ABPM and its potential implications for the management of HTN in this population. METHODS: Ovid-MEDLINE and PubMed databases were searched for interventional or observational studies enrolling adult kidney transplant recipients (KTRs) undergoing 24-h ABP readings compared with OBP or home BP. The main outcome was the proportion of KTRs diagnosed with HTN by ABPM, home or OBP recordings. Additionally, day-night BP variability and dipper/non-dipper status were assessed. RESULTS: Forty-two eligible studies (4115 participants) were reviewed. A cumulative analysis including 27 studies (3481 participants) revealed a prevalence of uncontrolled HTN detected by ABPM of 56% [95% confidence interval (CI) 46-65%]. The pooled prevalence of uncontrolled HTN according to OBP was 47% (95% CI 36-58%) in 25 studies (3261 participants). Very few studies reported on home BP recordings. The average concordance rate between OBP and ABPM measurements in classifying patients as controlled or uncontrolled hypertensive was 66% (95% CI 59-73%). ABPM revealed HTN phenotypes among KTRs. Two pooled analyses of 11 and 10 studies, respectively, revealed an average prevalence of 26% (95% CI 19-33%) for masked HTN (MHT) and 10% (95% CI 6-17%) for white-coat HTN (WCH). The proportion of non-dippers was variable across the 28 studies that analysed dipping status, with an average prevalence of 54% (95% CI 45-63%). CONCLUSIONS: In our systematic review, comparison of OBP versus ABP measurements disclosed a high proportion of MHT, uncontrolled HTN and, to a lesser extent, WCH in KTRs. These results suggest that HTN is not adequately diagnosed and controlled by OBP recordings in this population. Furthermore, the high prevalence of non-dippers confirmed that circadian rhythm is commonly disturbed in KTRs.

Perspectives on blood pressure by patients on haemo- and peritoneal dialysis.

AIM: The management of blood pressure in patients requiring dialysis remains challenging and controversial. This study aimed to describe the perspectives of patients treated with peritoneal or haemodialysis regarding blood pressure, to inform patient-centred management. METHODS: We conducted a secondary thematic analysis of qualitative data from multiple data sets derived from the Standardised Outcomes in Nephrology (SONG) initiative. We extracted and analysed the responses of adult patients (aged 18 years or over) on haemodialysis and peritoneal dialysis, and their caregivers. Qualitative data were extracted from 26 focus groups, two international Delphi surveys and two consensus workshops completed as part of the SONG-Haemodialysis and SONG-Peritoneal dialysis projects. RESULTS: Collectively, the studies involved 644 patients and caregivers from 86 countries. We identified four themes: helpless and incapacitated (including the subthemes of disabling and debilitating symptoms, limiting ability to work, fear of "crashes" - a sudden drop in blood pressure - forced to depend on others); dismissed and ignored (disregarded as a problem, lacking information, education and reassurance); escalating medication burden; and taking control for improved self-management (determining thresholds in fluid management, establishing a routine for proactive monitoring). CONCLUSION: Blood pressure symptoms are debilitating for patients on dialysis and exacerbated by a perceived lack of information about how to understand and manage these symptoms. More patient-centred management of blood pressure, particularly symptom-causing blood pressure, in patients on dialysis is likely to substantially improve patient satisfaction and outcomes.

Identifying patient-important outcomes in polycystic kidney disease: An international nominal group technique study.

AIM: Patients with autosomal dominant polycystic kidney disease (ADPKD) are at increased risk of premature mortality, morbidities and complications, which severely impair quality of life. However, patient-centered outcomes are not consistently reported in trials in ADPKD, which can limit shared decision-making. We aimed to identify outcomes important to patients and caregivers and the reasons for their priorities. METHODS: Nominal group technique was adopted involving patients with ADPKD and caregivers who were purposively selected from eight centres across Australia, France and the Republic of Korea. Participants identified, ranked and discussed outcomes for trials in ADPKD. We calculated an importance score (0-1) for each outcome and conducted thematic analyses. RESULTS: Across 17 groups, 154 participants (121 patients, 33 caregivers) aged 19 to 78 (mean 54.5 years) identified 55 outcomes. The 10 highest ranked outcomes were: kidney function (importance score 0.36), end-stage kidney disease (0.32), survival (0.21), cyst size/growth (0.20), cyst pain/bleeding (0.18), blood pressure (0.17), ability to work (0.16), cerebral aneurysm/stroke (0.14), mobility/physical function (0.12), and fatigue (0.12). Three themes were identified: threatening semblance of normality, inability to control and making sense of diverse risks. CONCLUSION: For patients with ADPKD and their caregivers, kidney function, delayed progression to end-stage kidney disease and survival were the highest priorities, and were focused on achieving normality, and maintaining control over health and lifestyle. Implementing these patient-important outcomes may improve the meaning and relevance of trials to inform clinical care in ADPKD.

Research priority setting in organ transplantation: a systematic review.

Barriers to access and long-term complications remain a challenge in transplantation. Further advancements may be achieved through research priority setting with patient engagement to strengthen its relevance. We evaluated research priority setting in solid organ transplantation and described stakeholder priorities. Databases were searched to October 2016. We synthesized the findings descriptively. The 28 studies (n = 2071 participants) addressed kidney [9 (32%)], heart [7 (25%)], liver [3 (11%)], lung [1 (4%)], pancreas [1 (4%)], and nonspecified organ transplantation [7 (25%)] using consensus conferences, expert panel meetings, workshops, surveys, focus groups, interviews, and the Delphi technique. Nine (32%) reported patient involvement. The 336 research priorities addressed the following: organ donation [43 priorities (14 studies)]; waitlisting and allocation [43 (10 studies)]; histocompatibility and immunology [31 (8 studies)]; immunosuppression [21 (10 studies)]; graft-related complications [38 (13 studies)]; recipient (non-graft-related) complications [86 (14 studies)]; reproduction [14 (1 study)], psychosocial and lifestyle [49 (7 studies)]; and disparities in access and outcomes [10 (4 studies)]. The priorities identified were broad but only one-third of initiatives engaged patients/caregivers, and details of the process were lacking. Setting research priorities in an explicit manner with patient involvement can guide investment toward the shared priorities of patients and health professionals.