Abstract
Purpose
Health-related quality of life (HRQoL) is an important yet understudied construct for individuals with hypospadias (HS). An important barrier towards understanding HRQoL and integrating it into research and clinical care for people with HS is the absence of an underlying conceptual framework to illustrate this construct. We propose a conceptual framework for HS-specific HRQoL based upon a scoping review of the HS literature.
Methods/Materials
We conducted a literature review of articles published between 1989 and 2019. Our search in Embase and Pubmed used the keyword “hypospadias” in combination with “quality of life” and “patient-reported outcomes.” We used thematic analysis of the resulting publications to identify core HRQOL domains. From these results and review of HRQoL literature in other pediatric populations, we developed a conceptual framework representing HS-specific HRQoL.
Results
We identified five domains of HRQOL previously studied in research with youth and adults with HS: penile appearance, voiding, social interaction, sexual health, and psychological or behavioral function. We propose a model of HS-specific HRQoL comprised of these domains and their areas of overlap, based upon the findings and conceptual mapping of our literature review.
Conclusion
This novel conceptual framework provides a foundation for understanding disease-specific HRQoL in individuals with HS and may serve as a guide for the conduct of future qualitative studies of the HS population. The overlapping biopsychosocial domains illustrate the possible effects of HS on day-to-day life. This framework may guide future surgical, clinical, and behavioral interventions that aim to improve medical care and quality of life outcomes for HS patients.
Similar content being viewed by others
References
Snodgrass, W. T. B., N.C.: Hypospadias, 2 ed: Elsevier, 2016
Winship, B. B., Rushton, H. G., & Pohl, H. G. (2017). In pursuit of the perfect penis: Hypospadias repair outcomes. J Pediatr Urol, 13, 285.
Sandberg, D.E.M.-B. (1989). Boys with Hypospadias A Survey of Behavioral Difficulties. Journal of Pediatric Psychology, 14(491), 1989.
de Wit, M. H., T.: Health-Related Quality of Life. In: Encyclopedia of Behavioral Medicine. Edited by M. D. Gellman and J. R. Turner. New York, NY: Springer New York, pp. 929–931, 2013
Sawin, K. J., Sano, R., & Sherburne, E. (2017). Factors related to parent and child satisfaction with bladder and bowel programs in children with SB in the national Spina Bifida patient registry (NSBPR). Journal of Pediatric Rehabilitation Medicine, 10, S73.
Liu, M. M., Holland, A. J., & Cass, D. T. (2015). Assessment of postoperative outcomes of hypospadias repair with validated questionnaires. Journal of Pediatric Surgery, 50, 2071.
Jones, B. C., O’Brien, M., Chase, J., et al. (2009). Early hypospadias surgery may lead to a better long-term psychosexual outcome. Journal of Urology, 182, 1744.
Aulagne, M. B., Harper, L., de Napoli-Cocci, S., et al. (2010). Long-term outcome of severe hypospadias. J Pediatr Urol, 6, 469.
Callens, N., De Cuypere, G., T’Sjoen, G., et al. (2015). Sexual quality of life after total phalloplasty in men with penile deficiency: an exploratory study. World journal of urology, 33, 137.
Chertin, B., Natsheh, A., Ben-Zion, I., et al. (2013). Objective and subjective sexual outcomes in adult patients after hypospadias repair performed in childhood. Journal of Urology, 190, 1556.
Fraumann, S. A., Stephany, H. A., Clayton, D. B., et al. (2014). Long-term follow-up of children who underwent severe hypospadias repair using an online survey with validated questionnaires. Journal of Pediatric Urology, 10, 446.
Kanematsu, A., Tanaka, S., Hashimoto, T., et al. (2019). Analysis of the association between paternity and reoperation for urethral obstruction in adult hypospadias patients who underwent two-stage repair in childhood. BMC Urology. https://doi.org/10.1186/s12894-019-0512-2.
Menon, V., Breyer, B., Copp, H. L., et al. (2016). Do adult men with untreated ventral penile curvature have adverse outcomes? Journal of Pediatric Urology, 12, 31.e1.
Nozohoor Ekmark, A., Arnbjornsson, E., Svensson, H., et al. (2017). Patient-reported long-term outcome after primary hypospadias repair. J Plast Surg Hand Surg, 51, 172.
Ruppen-Greeff, N. K., Weber, D. M., Gobet, R., et al. (2013). Health-related quality of life in men with corrected hypospadias: an explorative study. J Pediatr Urol, 9, 551.
Rynja, S. P., de Jong, T., Bosch, J., et al. (2018). Proximal hypospadias treated with a transverse preputial island tube: long-term functional, sexual, and cosmetic outcomes. BJU Int, 122, 463.
Schlomer, B., Breyer, B., Copp, H., et al. (2014). Do adult men with untreated hypospadias have adverse outcomes? A pilot study using a social media advertised survey. Journal of Pediatric Urology, 10, 672.
Schonbucher, V. B., Landolt, M. A., Gobet, R., et al. (2008). Health-related quality of life and psychological adjustment of children and adolescents with hypospadias. Journal of Pediatrics, 152, 865.
Seibold, J., Werther, M., Alloussi, S., et al. (2010). Objective long-term evaluation after distal hypospadias repair using the meatal mobilization technique. Scandinavian Journal of Urology and Nephrology, 44, 298.
Thiry, S., Dormeus, S., Tombal, B., et al. (2013). Long-term functional, cosmetic and sexual outcomes of hypospadias correction performed in childhood. European Urology, Supplements, 12, e415.
Holland, A. J. A. S., G.H.H.; Ross, P.J.; Cass D. T.: HOSE: an objective scoring system for evaluating the results of hypospadias surgery. BJU Int, 88: 255, 2001
Mureau, M. A., Koos Slob, A., & Verhulst, F. C. (1995). Genital perception of children, adolescents, and adults operated on for hypospadias: a comparative study. The Journal of Sex Research, 32, 289.
Mureau, M. A. M. S. (1997). Psychosocial function of children, adolescents, and adults following hypospadias surgery a comparative study. Journal of Pediatric Psychology, 22, 371.
Weber, D. M., Landolt, M. A., Gobet, R., et al. (2013). The Penile Perception Score: an instrument enabling evaluation by surgeons and patient self-assessment after hypospadias repair. Journal of Urology, 189, 189.
Mureau, M. A. M. S. (1995). Psychosexual adjustment of children and adolescents after different types of hypospadias surgery a norm-related study. The Journal of Urology, 154, 1902.
Ciancio, F., Lo Russo, G., Innocenti, A., et al. (2015). Penile length is a very important factor for cosmesis, function and psychosexual development in patients affected by hypospadias: Results from a long-term longitudinal cohort study. International Journal of Immunopathology and Pharmacology, 28, 421.
Weber, D. M., Schonbucher, V. B., Landolt, M. A., et al. (2008). The Pediatric Penile Perception Score: an instrument for patient self-assessment and surgeon evaluation after hypospadias repair. Journal of Urology, 180, 1080.
Keays, M. A., Starke, N., Lee, S. C., et al. (2016). Patient Reported Outcomes in Preoperative and Postoperative Patients with Hypospadias. Journal of Urology, 195, 1215.
Liu, G., Yuan, J., Feng, J., et al. (2006). Factors affecting the long-term results of hypospadias repairs. Journal of Pediatric Surgery, 41, 554.
Mondaini N, P. R., Bonafe M, et al. : Hypospadias: Incidence and Effects on Psychosexual Development as Evaluated with the Minnesota Multiphasic Personality Inventory Test in a Sample of 11,649 Young Italian Men. Urologia Internationalis, 68: 81, 2002
Aho, M. O. T., O.K.T.; Somppi, E. M. J.; Tammela, T. L. J.: Sexual and Social Life of Men Operated in Childhood for Hypospadias and Phimosis. Eur Urol, 37: 95, 1999
Örtqvist, L., Andersson, M., Strandqvist, A., et al. (2017). Psychosocial outcome in adult men born with hypospadias. Journal of Pediatric Urology, 13, 79.e1.
Andersson, M., Sjostrom, S., Wangqvist, M., et al. (2018). Psychosocial and Sexual Outcomes in Adolescents following Surgery for Proximal Hypospadias in Childhood. Journal of Urology, 200, 1362.
Hoy, N. Y., & Rourke, K. F. (2017). Better Defining the Spectrum of Adult Hypospadias: Examining the Effect of Childhood Surgery on Adult Presentation. Urology, 99, 281.
Sullivan, K. J., Hunter, Z., Andrioli, V., et al. (2017). Assessing quality of life of patients with hypospadias: A systematic review of validated patient-reported outcome instruments. J Pediatr Urol, 13, 19.
Metzler, I. S., Nguyen, H. T., Hagander, L., et al. (2014). Surgical outcomes and cultural perceptions in international hypospadias care. Journal of Urology, 192, 524.
Dokter, E. M., Goosen, E. E., van der Zanden, L. F., et al. (2019). Level of agreement on postoperative complications after one-stage hypospadias correction comparing medical records and parent reports. Journal of Pediatric Surgery, 54, 1825.
Wang, W. W., Tu, X. A., Deng, C. H., et al. (2009). Long-term sexual activity status and influencing factors in men after surgery for hypospadias. Asian J Androl, 11, 417.
Kiss, A., Sulya, B., Szasz, A. M., et al. (2011). Long-term psychological and sexual outcomes of severe penile hypospadias repair. J Sex Med, 8, 1529.
Ardelt, P. U., Cederqvist, M., Barth, M. et al.: The SIGHT questionnaire: A novel assessment tool for Satisfaction In Genital Hypospadias Treatment. J Pediatr Urol, 13: 33 e1, 2017
Nelson, C. P., Bloom, D. A., Kinast, R., et al. (2005). Long-term patient reported outcome and satisfaction after oral mucosa graft urethroplasty for hypospadias. Journal of Urology, 174, 1075.
Rynja, S. P., Bosch, J., de Jong, T. et al.: Coping styles in patients with hypospadias. J Pediatr Urol, 2019
Moriya, K., Kakizaki, H., Tanaka, H., et al. (2007). Long-Term Patient Reported Outcome of Urinary Symptoms After Hypospadias Surgery: Norm Related Study In Adolescents. Journal of Urology, 178, 1659.
Weber, D. M., Schonbucher, V. B., Gobet, R., et al. (2009). Is there an ideal age for hypospadias repair? A pilot study. J Pediatr Urol, 5, 345.
Poenaru, D., Pemberton, J., Frankfurter, C., et al. (2017). Establishing disability weights for congenital pediatric surgical conditions: a multi-modal approach. Popul Health Metr, 15, 8.
Turial, S., Enders, J., Engel, V., et al. (2011). Stent-free tubularized incised plate (TIP) repair of distal and mid-shaft hypospadias irrespective of age. European Journal of Pediatric Surgery, 21, 168.
Kanematsu, A., Higuchi, Y., Tanaka, S., et al. (2016). Multivariate analysis of the factors associated with sexual intercourse, marriage, and paternity of hypospadias patients. The journal of sexual medicine, 13, 1488.
Vandendriessche, S., Baeyens, D., Van Hoecke, E., et al. (2010). Body image and sexuality in adolescents after hypospadias surgery. J Pediatr Urol, 6, 54.
Schonbucher, V. B., Landolt, M. A., Gobet, R., et al. (2008). Psychosexual development of children and adolescents with hypospadias. J Sex Med, 5, 1365.
Bubanj, T. B., Perovic, S. V., Milicevic, R. M., et al. (2004). Sexual behavior and sexual function of adults after hypospadias surgery: a comparative study. Journal of Urology, 171, 1876.
Bhatia, V. P., Hilliard, M. E., Austin, P. F. et al.: Evaluating quality of patient-reported outcome measures in patients with hypospadias. J Pediatr Urol, 2020
Funding
None.
Author information
Authors and Affiliations
Corresponding author
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Bhatia, V.P., Mittal, A.G., Austin, P.F. et al. The hypospadias-specific health-related quality of life conceptual framework: a scoping review of the literature. Qual Life Res 30, 1537–1546 (2021). https://doi.org/10.1007/s11136-021-02773-w
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-021-02773-w