Renal relapse in children and adolescents with childhood-onset lupus nephritis: a 20-year study.

OBJECTIVES: There is little data on renal relapse in childhood-onset LN (cLN). We investigate the incidence, predictive factors and outcomes related to renal relapse. METHODS: We conducted a retrospective cohort study of all cLN diagnosed at ≤18 years between 2001-2021 to investigate the incidence and outcomes related to renal relapse. RESULTS: Ninety-five Chinese cLN patients (91% proliferative LN) were included. Induction immunosuppression was prednisolone and CYC [n = 36 (38%)] or MMF [n = 33 (35%)]. Maintenance immunosuppression was prednisolone and MMF [n = 53 (54%)] or AZA [n = 29 (31%)]. The rates of complete remission/partial remission (CR/PR) at 12 months were 78.9%/7.4%. Seventy renal relapses occurred in 39 patients over a follow-up of 10.2 years (s.d. 5.9) (0.07 episode/patient-year). Relapse-free survival was 94.7, 86.0, 80.1, 71.2, 68.3, 50.3 and 44.5% at 1, 2, 3, 4, 5, 10 and 20 years, respectively. Multivariate analysis showed that LN diagnosis <13.1 years [adjusted hazard ratio (HRadj) 2.59 995% CI 1.27, 5.29), P = 0.01], AZA maintenance [HRadj 2.20 (95% CI 1.01, 4.79), P = 0.05], PR [HRadj 3.9 (95% CI 1.03, 9.19), P = 0.01] and non-remission [HRadj 3.08 (95% CI 1.35, 11.3), P = 0.04] at 12 months were predictive of renal relapse. Renal relapse was significantly associated with advanced chronic kidney disease (stages 3-5) and end-stage kidney disease (17.9% vs 1.8%, P < 0.01). Furthermore, patients with renal relapse showed an increased incidence of infections (30.8% vs 10.7%, P = 0.02), osteopenia (38.5% vs 17.9%, P = 0.04) and hypertension (30.8% vs 7.1%, P < 0.01). CONCLUSION: Renal relapse is common among cLN, especially among young patients, and is associated with an increased incidence of morbidity and mortality. Attaining CR and the use of MMF appear to decrease the incidence of renal relapse.

Long-term outcomes with rituximab as add-on therapy in severe childhood-onset lupus nephritis.

BACKGROUND: Long-term data pertaining to rituximab as add-on therapy in childhood-onset lupus nephritis (cLN) is scarce. METHODS: A retrospective cohort study was conducted on all patients with proliferative cLN, diagnosed ≤ 18 years and between 2005 and 2021, who received rituximab for LN episodes that were life/organ threatening and/or treatment resistant to standard immunosuppression. RESULTS: Fourteen patients with cLN (female, n = 10) were included, with median follow-up period of 6.9 years. LN episodes (class III, n = 1; class IV, n = 11; class IV + V, n = 2) requiring rituximab occurred at 15.6 years (IQR 12.8-17.3), urine protein:creatinine ratio was 8.2 mg/mg (IQR 3.4-10.1) and eGFR was 28 mL/min/1.73 m2 (IQR 24-69) prior to rituximab treatment. Ten and four patients received rituximab at 1500 mg/m2 and 750 mg/m2, which were given at 46.5 days (IQR 19-69) after commencement of standard therapies. Treatment with rituximab resulted in improvements in proteinuria (ps < 0.001), eGFR (ps < 0.01) and serological parameters, including haemoglobin levels, complement 3 levels and anti-dsDNA antibodies, compared with baseline. Rates of complete/partial remission at 6-, 12- and 24-month post-rituximab were 28.6/42.8%, 64.2/21.4% and 69.2/15.3%. All three patients who required acute kidney replacement therapy became dialysis-free after rituximab. Relapse rate following rituximab was 0.11 episodes/patient-year. There was no lethal complication or severe infusion reaction. Hypogammaglobulinaemia was the most frequent complication (45%) but was mostly asymptomatic. Neutropenia and infections were observed in 20% and 25% of treatments. Upon last follow-up, three (21%) and two (14%) patients developed chronic kidney disease (stage 2, n = 2; stage 4; n = 1) and kidney failure, respectively. CONCLUSION: Add-on rituximab is an effective and safe rescue therapy for cLN patients with life-/organ-threatening manifestations or treatment-resistance. A higher resolution version of the Graphical abstract is available as Supplementary information.

Analgesia in the emergency department: why is it not administered?

OBJECTIVE: Pain management in the ED is often suboptimal, with many patients not receiving analgesia. We aimed to determine why some patients refuse it, why others do not receive it, and whether these variables impact on patient satisfaction with their pain management. METHODS: We undertook a prospective, observational study in a large, Australian, tertiary referral ED (February-May 2017). A convenience sample of consecutive adult patients with a triage pain score of ≥4 were examined. Data were collected from the medical record and the treating nurses. At follow-up at least 48 hours postdischarge, patients were asked if they received analgesia in the ED (if not, then why not) and how satisfied they were with their pain management (very dissatisfied/dissatisfied/slightly dissatisfied/slightly satisfied/satisfied/very satisfied). The primary outcome was why patients refuse analgesia. RESULTS: Of the 651 enrolled patients, 171 (26.3%) did not receive analgesia; for 30 (17.5%), patients and their nurses agreed that analgesia was refused. Patients mainly refused analgesia because their pain was not bad enough, they had recent analgesia intake, and concerns about side effects and interactions. Patients who received analgesia were more likely to be 'very satisfied' with their pain management (difference in proportions 10.8%, 95% CI 2.1 to 19.4). The satisfaction of patients who refused analgesia and those who did not receive analgesia for other reasons did not differ. CONCLUSION: Patient refusal is the most common reason for patients not receiving analgesia. Analgesia receipt is associated with greater patient satisfaction. However, a patient's knowledge of their analgesia receipt status may be incorrect. Disregard of the reasons for patients not receiving analgesia may underestimate the number offered analgesia.

Dr Google in the ED: searching for online health information by adult emergency department patients.

OBJECTIVE: To determine the prevalence, predictors, and characteristics of health-related internet searches by adult emergency department (ED) patients; to examine the effect of searching on the doctor-patient relationship and treatment compliance. DESIGN: A multi-centre, observational, cross-sectional study; a purpose-designed 51-item survey, including tools for assessing e-health literacy (eHEALS) and the effects of internet searching on the doctor-patient relationship (ISMII). Setting, participants: 400 adult patients presenting to two large tertiary referral centre emergency departments in Melbourne, February-May 2017. OUTCOME MEASURES: Descriptive statistics for searching prevalence and characteristics, doctor-patient interaction, and treatment compliance; predictors of searching; effect of searching on doctor-patient interaction. RESULTS: 400 of 1056 patients screened for eligibility were enrolled; their mean age was 47.1 years (SD, 21.1 years); 51.8% were men. 196 (49.0%) regularly searched the internet for health information; 139 (34.8%) had searched regarding their current problem before presenting to the ED. The mean ISMII score was 30.3 (95% CI, 29.6-31.0); searching improved the doctor-patient interaction for 150 respondents (77.3%). Younger age (per 10-year higher age band: odds ratio [OR], 0.74; 95% CI, 0.61-0.91) and greater e-health literacy (per one-point eHEALS increase: OR, 1.11; 95% CI, 1.06-1.17) predicted searching the current problem prior to presentation; e-health literacy predicted ISMII score (estimate, 0.39; 95% CI, 0.20-0.39). Most patients would never or rarely doubt their diagnosis (79%) or change their treatment plan (91%) because of conflicting online information. CONCLUSION: Online health care information was frequently sought before presenting to an ED, especially by younger and e-health literate patients. Searching had a positive impact on the doctor-patient interaction and was unlikely to reduce adherence to treatment.

Managing Lupus Nephritis in Children and Adolescents.

Lupus nephritis is an important manifestation of systemic lupus erythematosus, which leads to chronic kidney disease, kidney failure, and can result in mortality. About 35%-60% of children with systemic lupus erythematosus develop kidney involvement. Over the past few decades, the outcome of patients with lupus nephritis has improved significantly with advances in immunosuppressive therapies and clinical management. Nonetheless, there is a paucity of high-level evidence to guide the management of childhood-onset lupus nephritis, because of the relatively small number of patients at each centre and also because children and adolescents are often excluded from clinical trials. Children and adults differ in more ways than just size, and there are remarkable differences between childhood- and adult-onset lupus nephritis in terms of disease severity, treatment efficacy, tolerance to medications and most importantly, psychosocial perspective. In this article, we review the 'art and science' of managing childhood-onset lupus nephritis, which has evolved in recent years, and highlight special considerations in this specific patient population.

Long-Term Outcomes of Children and Adolescents With Biopsy-Proven Childhood-Onset Lupus Nephritis.

Introduction: Long-term data pertaining to childhood-onset lupus nephritis (cLN) remain extremely scarce. Methods: We conducted a retrospective cohort study of biopsy-proven cLN with onset age <18 years diagnosed from 2001 to 2020 to ascertain the long-term patient and kidney survival rates, and the incidence of advanced chronic kidney disease (CKD) (estimated glomerular filtration rate [eGFR] <60 ml/min per 1.73 m2). Results: A total of 92 subjects (78 female; age 13.7 ± 3.3 years; all Chinese) were included, with follow-up duration of 10.3 years (interquartile range, 5.8-15.9). Of these, 83 children (90%) had proliferative lupus nephritis (LN) (Class III/IV ± V). Mycophenolate was used for induction in 36%, whereas 34% received cyclophosphamide (CYC); 55% received mycophenolate as maintenance immunosuppression. The rates of complete remission (CR) and partial remission (PR) at 6 months and 12 months, respectively, were 65% and 20% and 78% and 8%. Two patients died (mortality rate 2.1/1000 patient-years), with a standardized mortality ratio of 22.3. Three patients (3.2%) developed end-stage kidney disease (ESKD), and advanced CKD occurred in 5 patients (5.4%). Survival rates without advanced CKD, ESKD, or death were 96.7%, 94.2%, 92.7%, 83.2% and 83.2% at 1 year, 5 years, 10 years, 15 years, and 20 years, respectively. Multivariate analysis revealed that severe kidney failure necessitating dialysis at presentation (adjusted hazard ratio 37.7, 95% confidence interval [CI] 4.0-355.6, P = 0.002), nonresponse (NR) after 12 months of treatment (adjusted hazard ratio 11.2, 95% CI 2.3-54.9, P = 0.003), and multiple nephritis flares (adjusted hazard ratio 2.6, 95% CI 1.1-6.2, P = 0.03) were predictive of advanced CKD, ESKD, or death. Other adverse outcomes included infections (2.9 episodes/100 patient-years), osteopenia (32%), hypertension (17%), short stature (14%), and avascular necrosis (7%). Conclusion: The long-term outcomes of cLN appeared to have improved in the present era with effective immunosuppression, cautious drug tapering, and assurance of medication adherence. There is still an unacceptably high prevalence of adverse outcomes.

Our observations with cold calling: Patient anger and undesirable experiences.

Little is known about the effects of the 'cold calling' technique (telephone contact without prior warning) for patient follow up in ED research. Recently, we undertook a prospective, observational pain management study. Patients were cold called 48 h post-discharge and surveyed regarding their pain management satisfaction. We made contact with 778 patients. Among these, we observed 12 cases of patient anger: mistaken identity, disbelief that the hospital was calling, frustration that test results and appointment times could not be provided, abuse about ED management and outpourings of sadness. We also observed eight cases of an undesirable experience for either the patient, their family or the caller: five patients had died (including one 'at her last moments'), precipitation of patient distress and uncomfortable situations for the caller. Given our experience, we believe that cold calling should be avoided, where possible, and other techniques (e.g. limited disclosure) considered as alternatives.

Barriers to providing optimal management of psychiatric patients in the emergency department (psychiatric patient management).

BACKGROUND: We aimed to determine the barriers to optimal management of psychiatric patients in the emergency department (ED). METHODS: We undertook an observational study in a tertiary referral ED with a 24h acute psychiatric nursing service (February to April, 2017). Following patient discharge, the attending psychiatric nurse completed a validated questionnaire to determine the barriers they encountered with their patient. RESULTS: Data were collected on 104 patient encounters. The environmental/resource barriers included limited space (30.8% of cases), limited time (25.0%) and ED overcrowding (22.1%). The ED staff barriers included insufficient knowledge and education regarding psychiatric illness (25.0%), negative attitudes (17.3%) and avoidance of psychiatric patients (16.3%). The patient barriers included dual diagnoses (26.0%), difficulty differentiating between psychiatric illness and social disorganisation (25.0%), and presentation issues complicating management (22.1%). The day of presentation, patient diagnosis and place of disposition were associated with the total number of barriers for each patient. Most barriers were reported on weekdays, for patients with substance abuse disorders or psychosis and for those discharged to home or an inpatient psychiatric ward. CONCLUSION: Barriers to optimal psychiatric management are common and vary considerably. These findings will inform workplace reform and education strategies aimed at mitigating the observed barriers.

Variables associated with completeness of medical record documentation in the emergency department.

OBJECTIVE: The completeness of ED medical record documentation is often suboptimal. We aimed to determine the variables associated with documentation completeness in a large, tertiary referral ED. METHODS: We audited 1200 randomly selected medical records of patients who presented with either abdominal pain, cardiac chest pain, shortness of breath or headache between May-July 2013 and May-July 2016. Data were collected on patient and treating doctor variables. Documentation completeness was assessed using a 0-10 point scoring tool designed for the study. A maximum score was achieved if each of 10 pre-determined important items, specific to the presenting complaint, were documented (five medical history items, five physical examination items). Data were analysed using multivariate regression. RESULTS: The presenting year, day and time, patient age and gender, preferred language, interpreter requirement, discharge destination and doctor gender were not associated with documentation completeness (P > 0.05). Patients with triage category 3 or pain score of 6-7 had higher documentation scores (P < 0.05). Compared to interns, registrars (effect size -0.72, 95% CI -1.02 to -0.42, P < 0.01) and consultants (-1.62, 95% CI -1.95 to -1.29, P < 0.01) scored significantly less. The headache patient subgroup scored significantly less than the other patient subgroups (-0.35, 95% CI -0.63 to -0.08, P = 0.01). For all presenting complaint subgroups, examination findings were less well documented than history items (P < 0.001). CONCLUSION: Documentation completeness is less among senior doctors, headache patients and for examination findings. Research should determine if the supervision responsibilities of senior doctors affects documentation and if medico-legal and patient care implications exist.