Assessment of long-term quality of life, bowel and voiding function outcomes in patients with anorectal malformation at a single UK centre.

AIMS: Assess long-term quality of life (QoL), bowel and voiding function in anorectal malformation (ARM) paediatric patients. METHOD: Retrospective review of ARM patients between 2007 and 2020 was performed. QoL (all patients), bowel and voiding function (> 5 yo) were assessed using the paediatric quality of life inventory (PedsQL), paediatric incontinence and constipation score (PICS) and dysfunctional voiding scoring system (DVSS), respectively. RESULTS: There were 122 patients (49% female, 85 > 5 yo) with ARM. Two had died, four refused, twenty-two were non-contactable, leaving ninety-four patients (65 > 5 yo) included. Mean age was 89 months (19-183), and follow-up was 86 months (13-183). Patients had significantly poorer scores for QoL, bowel and voiding function compared to published healthy controls. 57% had poor bowel function, 32% had poor voiding function and 38% required 'ancillary aids' to facilitate function. Patients using 'ancillary aids' for voiding function had a significantly lower QoL (parent: 62 vs 77; p = 0.01, patient: 66 vs 79; p = 0.05). Bowel continence was worse in those with high vs low ARM (13 vs 20, p = 0.004) and timely vs delayed diagnosis (17 vs 24, p = 0.04). CONCLUSION: Patients with ARM have significantly worse QoL, bowel and voiding function than normal healthy controls. There is a need for long-term monitoring of function and further support for these children. LEVEL OF EVIDENCE: III.

A consensus process to identify research priorities in paediatric urology in the United Kingdom.

INTRODUCTION: Paediatric urologists manage a spectrum of conditions, much of the evidence for relevant treatment pathways is of low quality. For many conditions treatment varies according to location and surgeon; children with the same condition might have surgery in one unit but watchful waiting in another. Underlying this variation are differences in opinion, and insufficient high-level evidence with few prospective randomized studies. Such studies may be challenging to design, fund and recruit into, and are more likely to succeed if there is a collaborative approach. Research prioritization is a tool to identify the research of most value. Delphi methodology is an interpretive technique aiming to gain the consensus view of interested parties. The British Association of Paediatric Urologists (BAPU) set out to ascertain consensus on what paediatric urologists, working in the UK, consider to be areas of priority for research. This paper describes the process used, and the resulting list of research questions. METHODS: A scoping survey of paediatric urologists in the UK was undertaken to identify an initial set of research questions. These were refined by the BAPU research committee (BAPU RC), then prioritized using a modified Delphi process. During Stage 1a multiple new research questions were submitted leading to Stage 1b, an interim process. All UK paediatric urologists were invited to take part in Stage 2 of the prioritization process. RESULTS: Sixty-five questions were submitted to the scoping survey by 24 paediatric urologists. The BAPU RC refined these to 60 questions, which were submitted to Stage 1a of the modified Delphi process. Sixty-seven people completed Stage 1a, at the same time submitting 224 additional research questions. The BAPU RC revised the entire question set, ensuring the key subject of the original question was not altered and novel questions were retained. The BAPU RC undertook interim scoring of the resultant 79 questions, the top scoring 25 questions plus 5 lower scoring 'wild card' questions (to ensure the breadth of the specialty was represented) were put forward to Stage 2. A total of 65 people completed Stage 2, including a lay representative. A list of 30 priority research questions was generated; the top 10 includes management of neuropathic bladder, posterior urethral valves, antibiotic prophylaxis, DSD & CAH, continence, male external genitalia, VUR and transition care (Table). CONCLUSION: This process has provided BAPU, paediatric urologists in the UK, and funders with areas of research considered a priority in the specialty.

Why adolescents delay with presentation to hospital with acute testicular pain: A qualitative study.

BACKGROUND/PURPOSE: Adolescents have poor outcomes following testicular torsion directly attributable to delay from onset of symptoms to presentation to hospital. The aim of this study was to investigate the barriers to urgent presentation in young men. METHODS: Semistructured interviews were undertaken with young men (11-19 years), using a topic guide exploring issues surrounding testicular pain and health. Thematic analysis was undertaken using a framework approach. RESULTS: Twenty-seven adolescents were recruited, data saturation was reached at sixteen participants, and median age was 13.5 years (range 11-18). The process by which an adolescent gets to hospital with testicular pain is slow. They must recognize the problem and alert their parents, who then use a 'watch and wait' policy to assess need for medical review, often leaving it 'a day' or overnight. Adolescent males do not engage with healthcare services independently of their parents. Additional factors preventing early presentation include: absence of knowledge about testicular pathology from adolescents and their parents; concern from the young people about raising a false alarm and family concerns about burdening healthcare services. CONCLUSIONS: Recommendations include designing a testicular health education campaign for young men and educating parents regarding the medical conditions where a 'watch and wait' policy may be harmful to their child. LEVEL OF EVIDENCE: VI.

Data and data illustrations supporting the analysis of transcripts from interviews exploring the views and experiences of young men and their parents/guardians regarding testicular health.

Evidence shows young men have poor outcomes from testicular torsion directly attributable to delay in presentation to hospital [1]. Only a third to a half of adolescents present within 6 h with testicular pain, [2,3] There is poor understanding of why adolescents delay in presenting with testicular pain. The authors started without an a-priori hypothesis and designed a thematic qualitative research protocol to explore the phenomena is a naturalistic setting [4,5] . Sixteen young men (11-19 years) and their parents or guardians underwent semi-structured interviews, directed by a topic guide which evolved with subsequent interview findings. Young men were recruited from out of school clubs to minimise the bias associated with schools or hospital recruitment, and were naïve to testicular disease. Verbatim transcriptions were coded, categories and themes formed and final concepts derived utilising a framework methodology. The figure included shows the initial topic guide. The data tables presented show the emergent themes and the final code book. The authors have utilised the analysis to explore the factors impeding young men in presenting early to hospital with testicular pain [6]. The authors feel the data tables and raw data will be of interest to other researchers interested in adolescent health, health access, public health, linguistics and healthcare qualitative methodology.

Predictors of complications following retroperitoneoscopic total and partial nephrectomy.

INTRODUCTION: Recent reports in the literature suggest an increased risk of complications with retroperitoneal as opposed to transperitoneal approach to partial nephrectomy (PN) and total nephrectomy (TN). We are a large unit performing predominantly retroperitoneoscopic PN and TN. We aim to review our outcomes and perform analysis to elucidate the predictors of complications following the retroperitoneal approach for extirpative kidney surgery. METHODS: We performed a single center retrospective review of children undergoing MIMS TN and PN between 2005 and 2015. Variables were tested for association with outcomes using Chi2 and Spearman's Rho correlation. RESULTS: We performed 173 MIMS nephrectomies, 119 total and 54 partial. Median age and weight were 5 years (6 months to 18 years) and 24.9 kg (7.7 to 85 kg) and operative time 147 min. There were 4 conversions and 17 postoperative complications. 19.6% children required further surgery, including 8 completion stumpectomies. Retroperitoneal approach did not have increased risk compared to transperitoneal for need of further surgery. Partial nephrectomy was not associated with higher rate of intraoperative complication or LOS. Predictors of intraoperative complication were vessel closure technique. Associations with need for further surgery were: ESRF, contralateral disease, bladder dysfunction, presence of PD catheter, and need for concomitant procedure. CONCLUSION: Our conversion rate (1.9%) and need for further surgery (13.1%) following the retroperitoneal approach to the kidney are favorable to the literature. Need for reoperation is often associated with the underlying diagnosis and the natural sequelae of the disease process. LEVEL OF EVIDENCE: IV.