Programmaleider Communicatie in de Gezondheidszorg; bijzonder hoogleraar 'Communicatie in de gezondheidszorg', Radboudumc
Publicatie
Publicatie datum
Patient experiences and provider perspectives on genital surgery on young children with DSD.
Dulmen, S. van. Patient experiences and provider perspectives on genital surgery on young children with DSD. Patient Education and Counseling: 2023, 109(Suppl. S), p. 123. Meeting abstract
ABSTRACT:
Background
Recently, the United Nations issued a strong statement against performing elective genital surgery on children with DSD (Differences of Sex Development) below the age of 12 years. In children with DSD, development of chromosomal, gonadal or anatomic sex is atypical. Children from 12 years are legally allowed to decide (with their parents) on such interventions, but at a younger age they cannot. Yet, genital surgery does have an impact on the rest of their lives. There is no consensus in relation to the need or optimal timing of many surgical interventions and the management of DSD remains extremely difficult because it involves dealing with uncertainty for parents and professionals.
Insight into the frequency and timing of genital surgery as well as in the preceding decision-making process in parents and providers can make clear how the decision for direct or deferred surgery can be supported. We aimed to investigate numerical trends in genital surgery on children with DSD in the Netherlands and to ask healthcare providers to interpret these trends. In addition, we aimed to get insight into the process that parents of children with DSD go through before deciding on genital surgery or not.
Methods
By analyzing Dutch Hospital Data from 2014 until 2019, we currently investigate trends in genital surgery in a broad range of DSD diagnoses. Paediatricians and paediatric urologists working in one of the three Dutch Expertise Centers DSD, will then be asked to interpret these figures. Lastly, parents of children with DSD will be interviewed (n=12) on the arguments that made them decide to opt for genital surgery or not.
Discussion
The outcomes of this study will make clear to what extent the decision-making process regarding genital surgery on young children with DSD needs to be improved.
Background
Recently, the United Nations issued a strong statement against performing elective genital surgery on children with DSD (Differences of Sex Development) below the age of 12 years. In children with DSD, development of chromosomal, gonadal or anatomic sex is atypical. Children from 12 years are legally allowed to decide (with their parents) on such interventions, but at a younger age they cannot. Yet, genital surgery does have an impact on the rest of their lives. There is no consensus in relation to the need or optimal timing of many surgical interventions and the management of DSD remains extremely difficult because it involves dealing with uncertainty for parents and professionals.
Insight into the frequency and timing of genital surgery as well as in the preceding decision-making process in parents and providers can make clear how the decision for direct or deferred surgery can be supported. We aimed to investigate numerical trends in genital surgery on children with DSD in the Netherlands and to ask healthcare providers to interpret these trends. In addition, we aimed to get insight into the process that parents of children with DSD go through before deciding on genital surgery or not.
Methods
By analyzing Dutch Hospital Data from 2014 until 2019, we currently investigate trends in genital surgery in a broad range of DSD diagnoses. Paediatricians and paediatric urologists working in one of the three Dutch Expertise Centers DSD, will then be asked to interpret these figures. Lastly, parents of children with DSD will be interviewed (n=12) on the arguments that made them decide to opt for genital surgery or not.
Discussion
The outcomes of this study will make clear to what extent the decision-making process regarding genital surgery on young children with DSD needs to be improved.
ABSTRACT:
Background
Recently, the United Nations issued a strong statement against performing elective genital surgery on children with DSD (Differences of Sex Development) below the age of 12 years. In children with DSD, development of chromosomal, gonadal or anatomic sex is atypical. Children from 12 years are legally allowed to decide (with their parents) on such interventions, but at a younger age they cannot. Yet, genital surgery does have an impact on the rest of their lives. There is no consensus in relation to the need or optimal timing of many surgical interventions and the management of DSD remains extremely difficult because it involves dealing with uncertainty for parents and professionals.
Insight into the frequency and timing of genital surgery as well as in the preceding decision-making process in parents and providers can make clear how the decision for direct or deferred surgery can be supported. We aimed to investigate numerical trends in genital surgery on children with DSD in the Netherlands and to ask healthcare providers to interpret these trends. In addition, we aimed to get insight into the process that parents of children with DSD go through before deciding on genital surgery or not.
Methods
By analyzing Dutch Hospital Data from 2014 until 2019, we currently investigate trends in genital surgery in a broad range of DSD diagnoses. Paediatricians and paediatric urologists working in one of the three Dutch Expertise Centers DSD, will then be asked to interpret these figures. Lastly, parents of children with DSD will be interviewed (n=12) on the arguments that made them decide to opt for genital surgery or not.
Discussion
The outcomes of this study will make clear to what extent the decision-making process regarding genital surgery on young children with DSD needs to be improved.
Background
Recently, the United Nations issued a strong statement against performing elective genital surgery on children with DSD (Differences of Sex Development) below the age of 12 years. In children with DSD, development of chromosomal, gonadal or anatomic sex is atypical. Children from 12 years are legally allowed to decide (with their parents) on such interventions, but at a younger age they cannot. Yet, genital surgery does have an impact on the rest of their lives. There is no consensus in relation to the need or optimal timing of many surgical interventions and the management of DSD remains extremely difficult because it involves dealing with uncertainty for parents and professionals.
Insight into the frequency and timing of genital surgery as well as in the preceding decision-making process in parents and providers can make clear how the decision for direct or deferred surgery can be supported. We aimed to investigate numerical trends in genital surgery on children with DSD in the Netherlands and to ask healthcare providers to interpret these trends. In addition, we aimed to get insight into the process that parents of children with DSD go through before deciding on genital surgery or not.
Methods
By analyzing Dutch Hospital Data from 2014 until 2019, we currently investigate trends in genital surgery in a broad range of DSD diagnoses. Paediatricians and paediatric urologists working in one of the three Dutch Expertise Centers DSD, will then be asked to interpret these figures. Lastly, parents of children with DSD will be interviewed (n=12) on the arguments that made them decide to opt for genital surgery or not.
Discussion
The outcomes of this study will make clear to what extent the decision-making process regarding genital surgery on young children with DSD needs to be improved.