Variation in Health-Related Quality of Life in Children with Urologic Conditions
Elizabeth B. Roth, MD, Jessica T. Goetz, DO, Melissa A. Christensen, BS, Edmond Bedjeti, BS, Hrair-George O. Mesrobian, MD, Travis W. Groth, MD, John V. Kryger, MD.
Children's Hospital of Wisconsin, Milwaukee, WI, USA.
Background: Pediatric urologic diagnoses have an impact on overall health-related quality (HRQOL) in pediatric patients and their caregivers. We sought to measure this impact by using a validated HRQOL tool (Pediatric Quality of LifeTM Version 4.0) in selected groups of patients with urologic index diseases.
Methods and Materials: Parents and children with a urologic diagnoses of bladder exstrophy, spina bifida, hypospadias or urolithiasis treated between 2013 and 2016 were prospectively enrolled in a single institution clinical outcomes registry. A total of 313 patients consented to be in the registry. All families in the registry were sent annual PedsQLTM 4.0 questionnaires via their preferred method of contact (electronic or postal mail). All completed evaluations were collected and analyzed by specific diagnosis. A one-way analysis of variance was performed to determine whether quality of life metrics differed by urologic diagnosis. Tukey's multiple pairwise comparison testing was performed to determine pairwise differences while minimizing statistical error.
Results: Of the 313 patients enrolled in the registry, 24 patients had bladder estrophy, 64 had spina bifida, 162 had hypospadias and 59 had urolithiasis. Four patients with multiple diagnoses were excluded from further analysis. Response rate for the overall cohort was 49% (154/313). Hypospadias patients had the highest mean PedsQLTM score (87.7 ±12.9), followed by bladder exstrophy (78.3± 13.0) and urolithiasis (73.7± 24.0). Spina bifida patients had the lowest mean PedsQLTM score (60.4±12.4). Mean overall quality of life, physical function subscore and psychosocial function subscore were significantly different between diagnostic groups (p<0.0001 for all tests). Children with hypospadias reported significantly higher quality of life in all measured domains compared to urolithiasis and spina bifida. Bladder exstrophy patients reported significantly higher quality of life in all measured domains compared to spina bifida patients. No significant differences were observed between bladder exstrophy patients and those with urolithiasis.
Conclusion: Our results reveal significant variation in HRQOL for pediatric urology patients based on the primary diagnosis. Further investigation into clinical and patient determinants of HRQOL by diagnosis is indicated.
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