Integrative review and evaluation of quality of life related instruments in pediatric urology.

INTRODUCTION: While most paediatric urologists consider patients' quality of life (QOL) important, few actually measure this outcome. Our goal was to assess instruments used in the pediatric urology QOL literature, specifically looking at whether they captured QOL. METHODS: We searched MEDLINE and EMBASE for articles with a self-described primary outcome of measuring QOL. All validated QOL instruments in the papers were analyzed by QOL instrument content experts. Instruments were classified as focusing on: Functioning or QOL (Table). The term Functioning focuses on performing activities. QOL captures person's perceptions about their position in life, informed by circumstances, functioning and conditions. QOL instruments were further subdivided into generic QOL, health-related QOL (HRQOL) and disease-specific HRQOL. Only direct patient self-reported QOL instruments were then assessed, since they are the most clinically useful, reliably assessing patients' own perception of their QOL. RESULTS: Forty-three publications met inclusion criteria (published 1999-2019). Most common conditions included urinary incontinence (16, 37.2%) and kidney transplantation (12, 27.9%). Overall, 22 unique instruments purporting to measure QOL were identified. Looking at the concepts measured by each instrument, nine instruments (40.9%) assessed Functioning. Nine instruments (40.9%) measured a combination of Functioning and QOL. Only the remaining 4 instruments (18.2%) assessed strictly QOL. The 13 instruments assessing any QOL focused on generic QOL (n = 4), HRQOL (n = 3) and disease-specific HRQOL (n = 6). Of the subset of four instruments assessing strictly QOL, and not Functioning, all had patient self-reported versions available: two generic QOL instruments (KINDL, KIDSCREEN), one generic HRQOL (DISABKIDS), and one disease-specific HRQOL (QUALAS). Thirteen of 43 studies (30.2%) employed more than one instrument. Thirty-eight studies (88.4%) used an instrument measuring Functioning, with 19 (44.1%) measuring only Functioning, not QOL at all. Twenty-four studies (55.8%) used an instrument measuring actual QOL, although 17 (39.5%) used a combined Functioning/QOL instrument. Only nine (20.9%) used a strictly QOL instrument (strictly HRQOL instruments: 4.7%). DISCUSSION: We present encouraging evidence of sustained interest in QOL research in pediatric urology and identify areas needing improvement. Selecting appropriate QOL tools requires a working knowledge of their various underlying meanings and purposes. Whether it adequately assess QOL must be considered. We discuss strengths and weaknesses of instruments and a practical approach to QOL instrument selection. CONCLUSION: Much of pediatric urology is grounded in improving QOL. Unfortunately, most studies published to date focus on Functioning, rather than young people's perception-based QOL. Future QOL studies should ideally employ validated instruments capturing patient-reported QOL.

Time Driven Activity Based Costing of Management Pathways for Vesicoureteral Reflux.

INTRODUCTION: The approach to the management of vesicoureteral reflux remains variable despite being a common pediatric diagnosis, which makes costing unpredictable. The aim of our study is to employ time driven activity based costing to characterize institutional costs of 3 management pathways for vesicoureteral reflux. METHODS: We developed process maps for vesicoureteral reflux management based on practice guidelines applicable to a hypothetical female patient with vesicoureteral reflux index with grade 3 unilateral reflux without bowel bladder dysfunction at our institution. The costs of 3 management pathways were described, including watch and wait, minimally invasive endoscopic surgery with dextranomer/hyaluronic acid and open re-implantation surgery. Costs for each pathway were calculated using the capacity cost rate ($/minute) for institutional resources and time estimates of resource use captured through direct observation and electronic medical record data. Clinical outcomes such as the breakthrough urinary tract infections or renal scarring were not addressed in this cost description. RESULTS: A substantial range of total costs ($CAD) was observed for all pathways including watch and wait ($1,683.58 to $2,041.12), minimally invasive endoscopic surgery ($2,616.35 to $4,012.89) and open re-implantation surgery ($3,317.76 to $3,924.82). Total costs for a single dimercaptosuccinic acid scan accounted for 8% to 15% of any pathway's overall costs. Material costs for voiding cystourethrogram imaging and endoscopic surgery were high at 59% and 64% to 76% of their individual total costs, respectively. For open re-implantation surgery, high costs were attributable to the longer use of operating room space and inpatient postoperative stay. CONCLUSIONS: Time driven activity based costing demonstrates significant cost variability in vesicoureteral reflux treatment modalities and identified local cost drivers to target. Results from this study may be used to inform future cost-effectiveness analyses.