"Untold Distress" - How did the COVID-19 pandemic affect those who had previously experienced an epilepsy-related bereavement?

PURPOSE: This study explores the impact of the COVID-19 pandemic and lockdown on people with lived experience of sudden bereavement as a consequence of an epilepsy-related death. METHOD: We developed an online survey with fixed choice and open-ended response formats to collect data on grief symptoms and well-being during the pandemic. A total of 275 people bereaved by epilepsy-related deaths between 1980-2020 participated in this study: with 79 participants providing free-text responses for inductive thematic analysis. RESULTS: In total, 84% of participants reported a bereavement following a sudden death of a person aged under 40, with 22% aged 19 and under. The majority (77% of participants) reported they had been thinking more about the person who died compared to before the COVID-19 outbreak and 54% had experienced more distressing flashbacks to the time of death. Additionally, 61% reported more difficulties falling asleep and staying asleep and 88% of participants reported that the outbreak and response measures had negatively impacted upon their mental health. Medication was being taken for a diagnosed mental health condition by 33% of participants at the time of the study. We categorized these negative experiences during COVID in to four main-themes - 'Family', 'Lifestyle', 'Personal Well-being' and 'Health Services and Shielding Populations'. The 'Personal Well-being' theme was inextricably linked to grief symptoms including 'reflection on the death', 're-exposure to feeling', 'grief', 'salience of sudden deaths in the media' and 'inability to commemorate anniversaries and rituals'. These findings were consistent for bereaved people irrespective of the recency of the death. CONCLUSION: This study highlights the impact of the disruption caused by the pandemic on the grief-management of those bereaved by epilepsy-related death. Grief is not static and its management is connected to the psychosocial and formal support structures that were disrupted during the pandemic. The removal of these supports had an adverse effect upon the mental health and well-being of many bereaved. There is an urgent need for a system-wide transformation of epilepsy and mental health services to be inclusive of the needs and experiences of people impacted by sudden deaths in epilepsy and the contribution of the specialist service developed by families and clinicians to meet this gap.

Body mass index as a predictive value for complications associated with reconstructive surgery in patients with myelodysplasia.

PURPOSE: Patients with myelodysplasia often have urological pathology, with 25% to 40% requiring reconstructive procedures to achieve urinary and/or fecal continence. Complication rates from these major reconstructive procedures range between 10% and 50%. Additionally many of these patients have significant comorbidities, including a nonambulatory status that leads to an increased body mass index. It is currently unknown whether a high body mass index is associated with increased surgical complications. In this study we compare body mass index and postoperative complications. MATERIALS AND METHODS: We retrospectively reviewed the charts of all patients with myelodysplasia undergoing urinary or fecal reconstructive procedures. We analyzed data for body mass index and any documented complication occurring during hospitalization or at any time during followup. Patients were categorized based on body mass index as normal weight (less than 85th percentile), overweight (85th to 95th percentile) or obese (greater than 95th percentile). Statistical analyses using chi-square and Fisher's exact tests were then performed. RESULTS: Reconstructive procedures were carried out in 66 patients with myelodysplasia between 1997 and 2005. A total of 48 bladder augmentations were performed with a total of 101 stomas created. Mean followup was 39 months. Height and weight were available for body mass index calculation in 60 patients. Obesity was common in our patients with myelodysplasia, affecting 33% of the population (20 of 60 patients). We found a total of 53 complications in 31 patients (52%). There was a significant association between presence of complications and weight category, with complications occurring in 40% of normal weight, 40% of overweight and 75% of obese patients (p = 0.0380). An association between stomal stenosis and weight category was also found (p = 0.0373). In addition, multiple complications were more prevalent in obese patients. Of the 15 patients (25%) with 2 or more complications 10 (67%) were obese (p = 0.0066). CONCLUSIONS: Patients with myelodysplasia have a high incidence of obesity. Since obesity is associated with a higher complication rate, weight loss programs are highly recommended for obese patients with myelodysplasia before and after any reconstructive surgery.

Endoscopic injection of submucosal bulking agents for the management of incontinent catheterizable channels.

BACKGROUND: Urinary and fecal continence can be achieved by constructing catheterizable continent channels that provide access to the bladder and bowel. Some patients develop persistent stomal leakage. A minimally invasive method of injection with a bulking agent for treatment of stomal incontinence was evaluated. METHODS: A retrospective review identified patients with incontinence of their catheterizable continent urinary channel (CUC) and/or antegrade continence enema (ACE). All patients underwent circumferential endoscopic sub-mucosal injection of the channel with a bulking agent, performed at the level of the continence mechanism. The type of injected material, number of procedures required, and success rates were evaluated. RESULTS: Out of 157 patients with a CUC and/or ACE (total of 164 stomas), eight patients underwent the minimally invasive therapy (total of nine stomas). The initial reconstructive procedure was appendicovesicostomy in one patient, ileovesicostomy (Monti) in seven patients, and ACE in two patients. Amount of bulking agent injected varied from 1.4 to 7 cc (mean 3.72 cc). Follow up ranged from 1 to 39 months (median 15 months). Two patients received multiple injections. One patient had injection of both a CUC and ACE. At the time of final follow up, 6/7 (86%) patients with a CUC and 1/2 (50%) with an ACE were continent per catheterizable channel. CONCLUSION: Injection of a bulking agent provides an excellent minimally invasive treatment alternative for incontinence of a catheterizable channel.

Use of second look nephroscopy in children undergoing percutaneous nephrolithotomy.

PURPOSE: We determined the rate of stone clearance in children following percutaneous nephrolithotomy, endoscopic assessment of residual stone and the judicious use of second look nephroscopy. MATERIALS AND METHODS: We retrospectively reviewed the charts of all children undergoing percutaneous nephrolithotomy from 1996 to 2007. Cases were reviewed for pertinent details including preoperative and postoperative imaging, specifics of the procedure and followup. On completion of percutaneous nephrolithotomy the collecting system was assessed via combined nephrostogram and direct nephroscopy. If the collecting system could not be completely visualized or all stone fragments could not be cleared, the patient was referred for second look nephroscopy. Any residual stone present on initial followup imaging constituted a treatment failure. RESULTS: A total of 24 patients underwent percutaneous nephrolithotomy for 30 separate renal calculi. Mean patient age was 9.6 years, and mean stone burden was 2.53 cm. The success rate for percutaneous nephrolithotomy (inclusive of second look nephroscopy) was 87%. Of 30 cases 16 were managed by second look nephroscopy, with findings of residual fragments in all 16. Treatment failure was noted in 1 patient without second look nephroscopy and in 3 patients with second look nephroscopy. Of the 4 patients with treatment failure all were eventually rendered stone-free. CONCLUSIONS: Second look nephroscopy based on endoscopic findings during initial percutaneous nephrolithotomy is a reliable method of detecting and clearing residual stone fragments. Using such a protocol we achieved a high success rate of stone clearance in a population of patients with a significant stone burden.

Occurrence of urinary tract infection in children with significant upper urinary tract obstruction.

OBJECTIVES: Ureteropelvic junction obstruction and obstructive megaureter are common causes of upper urinary tract obstruction. Recent data have demonstrated that the rate of urinary tract infection (UTI) among children with upper tract obstruction not treated with prophylactic antibiotics is >36%. The aim of this study was to evaluate the occurrence of UTI in our patients with ureteropelvic junction obstruction and megaureter to better assess the role of prophylactic antibiotics. METHODS: A retrospective analysis was conducted. The inclusion criteria were grade 3 or 4 hydronephrosis secondary to obstructive megaureter or ureteropelvic junction obstruction in children not maintained on prophylactic antibiotics. UTI was defined as a culture-documented symptomatic infection. Fisher's exact tests were used to evaluate for an association between the occurrence of UTI with sex, level of obstruction, grade of hydronephrosis, and circumcision status. RESULTS: A total of 92 patients met the study criteria. The rate of UTI in all patients was 4.3% (95% confidence interval 0.2%-8.6%). No statistically significant difference in the infection rate was noted according to sex, obstruction level, hydronephrosis grade, or circumcision status. CONCLUSIONS: Our results have demonstrated a low occurrence of UTI in antenatally diagnosed patients not maintained on antibiotics. We have concluded that antibiotic prophylaxis is unlikely to benefit most children with grade 3 or 4 hydronephrosis secondary to upper tract obstruction.

Management of urachal remnants in early childhood.

PURPOSE: Generally, it is recommended that all urachal remnants be excised to avoid recurrent disease and possible malignant transformation later in life. However, spontaneous resolution with no need for further intervention has been reported. We reviewed the experience with urachal remnants at a single institution and evaluated which patients could be treated nonoperatively and which required surgical intervention. MATERIALS AND METHODS: We reviewed the medical records and radiographic studies of all patients with urachal remnants from January 1999 to January 2007. Patients were analyzed according to initial presentation, imaging findings and treatment. Serial clinical examinations and radiographic imaging were used to follow patients. RESULTS: An external urachal sinus was found in 9 patients (39.1%) and 1 was surgically excised. Of the 12 urachal cysts (52.2%) 9 ultimately required surgical excision, of which 6 were infected initially. A patent urachus was found in 2 patients, which resolved during an observation period. Radiographic imaging and/or physical examination diagnosed all remnants initially and confirmed complete resolution during followup. Eight of the 10 urachal remnants (80.0%) that resolved developed in patients younger than 6 months. Various accompanying urogenital anomalies were found in 8 patients (34.8%). CONCLUSIONS: A small urachal remnant, especially at birth, may be viewed as physiological. Urachal remnants in patients younger than 6 months are likely to resolve with nonoperative management. However, if symptoms persist or the urachal remnant fails to resolve after 6 months of age, it should be excised to prevent recurrent infections.