- Title
- Childhood hypospadias: evaluating the long-term outcomes and revisiting the ideal model of care
- Creator
- Vavilov, Sergey
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2023
- Description
- Research Doctorate - Doctor of Philosophy (PhD)
- Description
- Aims: The purpose of the research is to improve care for children born with hypospadias by studying the three main stakeholders involved in childhood hypospadias care: the patient, parents/carers, and surgeon. Methods: To achieve our aim effectively, different research methods had to be employed. To study the long-term surgical outcomes of hypospadias surgery, the data-linkage method was adopted, assisted by the NSW Centre of Health Record Linkage. Parental decision regret in Australian parents who consented to or refused hypospadias surgery for their son was investigated via the anonymous online questionnaire. A qualitative descriptive study was used to explore the reflections of hypospadias surgeons of Australia and Aotearoa New Zealand on the journey of patients born with distal hypospadias and their families; the data were collected via in-depth semi-structured interviews and analysed using the thematic reflexive analysis. Results: The data-linkage study demonstrated the ongoing occurrence of unplanned penile interventions after childhood hypospadias repair in the second and third decades of life, with the higher risk after a multi-stage proximal, single-stage proximal, and TIP repair, and after the division of the native urethral plate. Parental decision regret was present in more than half of the parents who consented to a repair their son’s hypospadias but was the highest in those who declined the repair. Parents also highlighted the main reasons to opt for surgery, most and least satisfying outcomes of the operation and expressed their wishes about improving the decision-making process. The qualitative study highlighted the individuality of the journey for every patient born with distal hypospadias and his family, and revealed several key factors that can positively or negatively impact this journey. Conclusion: This work adds new and hitherto unreported data about the journey of a child born with distal hypospadias and his family from the perspectives of the three main stakeholders: patients, parents, and surgeons. Long-term follow-up data invite evaluation of the repair types bearing higher reoperation risk, recalibrate the importance of urethroplasty vs chordee repair and call for a longer clinical follow-up. Data on parental decision regret suggest modifying counselling techniques and developing hypospadias-specific decision-making aids. The results of the interview study propose several elements (both within care process and content) that can positively impact the journey of children born with distal hypospadias and their families. This work also highlights the areas needing further exploration: the need for larger population-based studies on the surgical outcomes of hypospadias repair leveraging administrative databases and data-linkage technology and multicentre patient registries, calls to explore perceptions of hypospadias care by patients, patients/carers and other healthcare professionals, study training needs of hypospadias surgeons and risk factors of parental decision regret. Overall, it lays the groundwork for revisiting the existing model of care and creation of binational clinical guidelines for hypospadias.
- Subject
- hypospadias; children; model of care; outcome; decision regret; parents; perception of care; qualitative; data linkage
- Identifier
- http://hdl.handle.net/1959.13/1507264
- Identifier
- uon:55994
- Rights
- Copyright 2023 Sergey Vavilov
- Language
- eng
- Full Text
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| Thumbnail | File | Description | Size | Format | |||
|---|---|---|---|---|---|---|---|
| View Details Download | ATTACHMENT01 | Thesis | 17 MB | Adobe Acrobat PDF | View Details Download | ||
| View Details Download | ATTACHMENT02 | Abstract | 588 KB | Adobe Acrobat PDF | View Details Download |