EUROPEAN UROLOGY 68 (2015) 745–746
available at www.sciencedirect.com journal homepage: www.europeanurology.com
Platinum Opinion
Adolescent Urology and Transitional Care Christopher Woodhouse * Emeritus Professor of Adolescent Urology, University College London, London, UK
When a baby is born with a major congenital anomaly such as exstrophy, it takes a leap of imagination to see her as a prime minister, as a leader of a profession, or in any other adult occupation. Until the second half of the 20th century, such a leap was beyond imagination because most such babies died in childhood. Now, even with severe urologic anomalies, these children will have near normal life expectancy. The exceptions are those born with spina bifida (SB), 60% of whom have died by 40 yr of age [1]. 1.
Extent of need
To remain in a pediatric hospital forever is not an option: It would soon become an adult hospital. In a survey of academic pediatric units in the United States, there were 60 000 adult admissions from 1999 to 2008, with a 6.9% annual increase [2]. For the child in need of continuing medical help in adulthood, there are three possible pathways: move to an adult doctor in the same specialty, find a specialist for the chronic condition in question, or rely on nonspecialist care. The first of these options is suitable when the illness is similar in adults and children, as for example, with diabetes. With good transitional care, the number of hospital admissions for patients with diabetes is reduced by 23% compared with those with no transitional arrangements [3]. This pathway is not open to those with the urologic anomalies because none has an adult equivalent. There is no adult exstrophy; the effect of a posterior urethral valve is not the same as adult bladder outflow obstruction; SB is not the same as acquired spinal cord injury. Because each condition is relatively rare, it is unlikely that the third pathway—care in a general urology clinic— would be satisfactory. A patient with exstrophy, for example, would pose a challenge to a general urologist.
For children with urologic anomalies, the second pathway is essential. The need is for specialists who understand the impact of the anomalies in adulthood. They should work with pediatricians to create a transition process that enables children to move seamlessly from pediatric care to an adult environment in which patients remain under the same adult specialists. For convenience, this is called adolescent urology because no other title has emerged. Despite this name, the implication is that care is provided for the rest of patients’ lives. It might be possible to call it isovial urology (from the Greek iso´vios meaning lifelong). Based on the incidence of the relevant conditions, calculation suggests that a population of 4 million would support one adolescent urologist [4]. 2.
The transition process
Children and their families feel vulnerable as the patients approach adulthood [5]. The strong attachment of the child to the pediatric staff is a major barrier to transition [6]. The process should start early, and just the idea that the doctor has a long-term plan is reassuring. General guidelines already exist but have yet to be validated [7]. The first formal step, at 11 or 12 yr old, is an assessment by the pediatric team of the long-term needs. At about 13 or 14 yr of age, the child should start to attend a clinic with both the pediatric urologist and the team that will be taking over. A key factor in successful transition is continuity of care [8]. Four or five visits are required for the adolescent patient to build the same level of trust with the adolescent urologist as was experienced with the pediatrician [9]. There then follows a transfer phase in which the consultations and decisions are made predominantly by the adolescent clinicians. The pediatricians remain involved.
E-mail address: [email protected]. * Lister House, Chelsea Bridge Road, London, SW1W 8RH, UK. http://dx.doi.org/10.1016/j.eururo.2015.06.021 0302-2838/# 2015 European Association of Urology. Published by Elsevier B.V. All rights reserved.
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EUROPEAN UROLOGY 68 (2015) 745–746
Table 1 – Associated specialists required for support in an adolescent clinic by urologic diagnosis Condition Renal anomalies
Spina bifida
Intestinal reservoirs
Exstrophy
Posterior urethral valves Disorders of sex development
Prune belly syndrome
Specialists required Nephrologist Physician in hypertension Transplant team Nephrologist Orthopedist Neurologist Neurosurgeon Podiatrist Gynecologist/obstetrician Geneticist Plastic surgeon Gynecologist/obstetrician Biochemist Stone surgeon Stoma therapist Gynecologist/obstetrician Orthopedist Psychologist Oncologist Nephrologist Andrologist Endocrinologist Biochemist Gynecologist Geneticist Sex therapist Plastic surgeon Fertility specialist Nephrologist
This list is not exclusive. There is a universal need for specialist radiologists and nuclear medicine specialists. Psychologists are often required for any of these diagnoses.
3.
The adolescent clinic
ask! If the patient or the parents broach the subject, it must be addressed in a straightforward manner. Some families will have been given unrealistic expectations. If it is not raised at the first meeting, the subject must be introduced subsequently and sensitively by the doctor. As the urologic patients grow through adulthood, they have needs that go beyond the genitourinary system. It is necessary to have a group of clinicians who can share the care (Table 1). Ideally, these clinicians should have an interest in long-term care in their own fields. It is essential that they understand the idiosyncrasies of congenital urologic problems. 4.
Outcomes
Urologists are accustomed to think of outcomes in terms of survival, continence, preservation of renal function, and so on. Although such markers are important, the patients want to be ‘‘normal’’ adults. The anomalies must clearly be corrected as much as possible, but ultimately, the marker of success is integration into adult society. This means education, family, work, and happiness. If employment can be used as a surrogate for these outcomes, the limited data available show that such success can be achieved. In this author’s practice, a review of occupations including patients with all pediatric urologic diagnoses showed that 34% were in a profession and 31% were in administrative or skilled occupations [4]. Conflicts of interest: The author has nothing to disclose.
References [1] Oakeshott P, Hunt GM, Poulton A, Reid F. Expectation of life and
The age at which a patient transfers to the ‘‘adolescent clinic’’ should depend on the individual level of maturity, but in some countries, there is a legal age at which transfer is permitted. The clinical environment can be made appropriate for an adolescent patient, but the hospital will serve adults. The new medical team has a difficult tightrope on which to walk! There is no easy way of transferring responsibility from the parents to the adolescent patient. I find it helpful, from the start, to converse directly with the patient. Even when the parents ask a question, I address the answer to the patient. There will usually be an opportunity to make an examination, and the parents can be asked to wait outside. I can then ask if there are any private concerns that need discussion. It is most important for the new physician to remember who the patient is and not become a go-between in a parent–patient battle. In most societies, even when patients have not reached the legal age of consent, they are deemed competent to make medical decisions, provided that they understand the consequences of their actions. Most patients want to discuss their sexuality but are afraid to ask. Most physicians are afraid that patients will
unexpected death in open spina bifida: a 40-year complete, nonselective, longitudinal cohort study. Dev Med Child Neurol 2010;52: 749–53. [2] Goodman DM, Hall M, Levin A, et al. Adults with chronic health conditions originating in childhood: inpatient experience in children’s hospitals. Pediatrics 2011;128:5–13. [3] Nakhla M, Daneman D, To T, Paradis G, Guttmann A. Transition to adult care for youths with diabetes mellitus: findings from a universal health care system. Pediatrics 2009;124:e1134–41. [4] Woodhouse CRJ. Adolescent Urology and Long-Term Outcomes. Oxford, UK: Wiley; 2015. p. 1–10. [5] Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011;96:548–53. [6] Toorn vdF, Cobussen-Boekhorst H, Kwak K, et al. Needs of children with a chronic bladder in preparation for transfer to adult care. J Pediatr Urol 2013;9:509–15. [7] Colver AF, Merrick H, Deverill M, et al. Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health 2013;13:675. [8] Gleeson H, Turner G. Transition to adult services. Arch Dis Child Educ Pract Ed 2012;97:86–92. [9] Klostermann BK, Slap GB, Nebrig DM, Tivorsak TL, Britto MT. Earning trust and losing it: adolescents’ views on trusting physicians. J Fam Pract 2005;54:679–87.
available at www.sciencedirect.com journal homepage: www.europeanurology.com
Platinum Opinion
Adolescent Urology and Transitional Care Christopher Woodhouse * Emeritus Professor of Adolescent Urology, University College London, London, UK
When a baby is born with a major congenital anomaly such as exstrophy, it takes a leap of imagination to see her as a prime minister, as a leader of a profession, or in any other adult occupation. Until the second half of the 20th century, such a leap was beyond imagination because most such babies died in childhood. Now, even with severe urologic anomalies, these children will have near normal life expectancy. The exceptions are those born with spina bifida (SB), 60% of whom have died by 40 yr of age [1]. 1.
Extent of need
To remain in a pediatric hospital forever is not an option: It would soon become an adult hospital. In a survey of academic pediatric units in the United States, there were 60 000 adult admissions from 1999 to 2008, with a 6.9% annual increase [2]. For the child in need of continuing medical help in adulthood, there are three possible pathways: move to an adult doctor in the same specialty, find a specialist for the chronic condition in question, or rely on nonspecialist care. The first of these options is suitable when the illness is similar in adults and children, as for example, with diabetes. With good transitional care, the number of hospital admissions for patients with diabetes is reduced by 23% compared with those with no transitional arrangements [3]. This pathway is not open to those with the urologic anomalies because none has an adult equivalent. There is no adult exstrophy; the effect of a posterior urethral valve is not the same as adult bladder outflow obstruction; SB is not the same as acquired spinal cord injury. Because each condition is relatively rare, it is unlikely that the third pathway—care in a general urology clinic— would be satisfactory. A patient with exstrophy, for example, would pose a challenge to a general urologist.
For children with urologic anomalies, the second pathway is essential. The need is for specialists who understand the impact of the anomalies in adulthood. They should work with pediatricians to create a transition process that enables children to move seamlessly from pediatric care to an adult environment in which patients remain under the same adult specialists. For convenience, this is called adolescent urology because no other title has emerged. Despite this name, the implication is that care is provided for the rest of patients’ lives. It might be possible to call it isovial urology (from the Greek iso´vios meaning lifelong). Based on the incidence of the relevant conditions, calculation suggests that a population of 4 million would support one adolescent urologist [4]. 2.
The transition process
Children and their families feel vulnerable as the patients approach adulthood [5]. The strong attachment of the child to the pediatric staff is a major barrier to transition [6]. The process should start early, and just the idea that the doctor has a long-term plan is reassuring. General guidelines already exist but have yet to be validated [7]. The first formal step, at 11 or 12 yr old, is an assessment by the pediatric team of the long-term needs. At about 13 or 14 yr of age, the child should start to attend a clinic with both the pediatric urologist and the team that will be taking over. A key factor in successful transition is continuity of care [8]. Four or five visits are required for the adolescent patient to build the same level of trust with the adolescent urologist as was experienced with the pediatrician [9]. There then follows a transfer phase in which the consultations and decisions are made predominantly by the adolescent clinicians. The pediatricians remain involved.
E-mail address: [email protected]. * Lister House, Chelsea Bridge Road, London, SW1W 8RH, UK. http://dx.doi.org/10.1016/j.eururo.2015.06.021 0302-2838/# 2015 European Association of Urology. Published by Elsevier B.V. All rights reserved.
746
EUROPEAN UROLOGY 68 (2015) 745–746
Table 1 – Associated specialists required for support in an adolescent clinic by urologic diagnosis Condition Renal anomalies
Spina bifida
Intestinal reservoirs
Exstrophy
Posterior urethral valves Disorders of sex development
Prune belly syndrome
Specialists required Nephrologist Physician in hypertension Transplant team Nephrologist Orthopedist Neurologist Neurosurgeon Podiatrist Gynecologist/obstetrician Geneticist Plastic surgeon Gynecologist/obstetrician Biochemist Stone surgeon Stoma therapist Gynecologist/obstetrician Orthopedist Psychologist Oncologist Nephrologist Andrologist Endocrinologist Biochemist Gynecologist Geneticist Sex therapist Plastic surgeon Fertility specialist Nephrologist
This list is not exclusive. There is a universal need for specialist radiologists and nuclear medicine specialists. Psychologists are often required for any of these diagnoses.
3.
The adolescent clinic
ask! If the patient or the parents broach the subject, it must be addressed in a straightforward manner. Some families will have been given unrealistic expectations. If it is not raised at the first meeting, the subject must be introduced subsequently and sensitively by the doctor. As the urologic patients grow through adulthood, they have needs that go beyond the genitourinary system. It is necessary to have a group of clinicians who can share the care (Table 1). Ideally, these clinicians should have an interest in long-term care in their own fields. It is essential that they understand the idiosyncrasies of congenital urologic problems. 4.
Outcomes
Urologists are accustomed to think of outcomes in terms of survival, continence, preservation of renal function, and so on. Although such markers are important, the patients want to be ‘‘normal’’ adults. The anomalies must clearly be corrected as much as possible, but ultimately, the marker of success is integration into adult society. This means education, family, work, and happiness. If employment can be used as a surrogate for these outcomes, the limited data available show that such success can be achieved. In this author’s practice, a review of occupations including patients with all pediatric urologic diagnoses showed that 34% were in a profession and 31% were in administrative or skilled occupations [4]. Conflicts of interest: The author has nothing to disclose.
References [1] Oakeshott P, Hunt GM, Poulton A, Reid F. Expectation of life and
The age at which a patient transfers to the ‘‘adolescent clinic’’ should depend on the individual level of maturity, but in some countries, there is a legal age at which transfer is permitted. The clinical environment can be made appropriate for an adolescent patient, but the hospital will serve adults. The new medical team has a difficult tightrope on which to walk! There is no easy way of transferring responsibility from the parents to the adolescent patient. I find it helpful, from the start, to converse directly with the patient. Even when the parents ask a question, I address the answer to the patient. There will usually be an opportunity to make an examination, and the parents can be asked to wait outside. I can then ask if there are any private concerns that need discussion. It is most important for the new physician to remember who the patient is and not become a go-between in a parent–patient battle. In most societies, even when patients have not reached the legal age of consent, they are deemed competent to make medical decisions, provided that they understand the consequences of their actions. Most patients want to discuss their sexuality but are afraid to ask. Most physicians are afraid that patients will
unexpected death in open spina bifida: a 40-year complete, nonselective, longitudinal cohort study. Dev Med Child Neurol 2010;52: 749–53. [2] Goodman DM, Hall M, Levin A, et al. Adults with chronic health conditions originating in childhood: inpatient experience in children’s hospitals. Pediatrics 2011;128:5–13. [3] Nakhla M, Daneman D, To T, Paradis G, Guttmann A. Transition to adult care for youths with diabetes mellitus: findings from a universal health care system. Pediatrics 2009;124:e1134–41. [4] Woodhouse CRJ. Adolescent Urology and Long-Term Outcomes. Oxford, UK: Wiley; 2015. p. 1–10. [5] Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011;96:548–53. [6] Toorn vdF, Cobussen-Boekhorst H, Kwak K, et al. Needs of children with a chronic bladder in preparation for transfer to adult care. J Pediatr Urol 2013;9:509–15. [7] Colver AF, Merrick H, Deverill M, et al. Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health 2013;13:675. [8] Gleeson H, Turner G. Transition to adult services. Arch Dis Child Educ Pract Ed 2012;97:86–92. [9] Klostermann BK, Slap GB, Nebrig DM, Tivorsak TL, Britto MT. Earning trust and losing it: adolescents’ views on trusting physicians. J Fam Pract 2005;54:679–87.
