BERKELEY, CA (UroToday.com) - Children with incurable chronic illnesses or with a major congenital anomaly fall broadly into two groups: those whose problem has an adult equivalent such as asthma, diabetes, or rheumatoid arthritis and those who have no adult equivalent which would include all of the congenital anomalies of the genitourinary system.
| "There is an overwhelming need, therefore, for pediatric urologists to plan for their patients to transfer to adult care and for adult urologists to establish a sub-specialty to receive them." |
For the first group, there is often a major difficulty in the transition from childhood to adult life. In many countries, and particularly in the United Kingdom, the specialty of adolescent medicine has grown up. There are sub-specialties for most conditions including adolescent cancer, adolescent cardiology, adolescent diabetes, etc. Unfortunately, adolescence is deemed to end at 19 or 20 years old and all specialized care stops.
This may work for those who have become reasonably mature and whose condition has an adult specialty such as diabetes; transfer to the adult clinic is realistic. It does not work for those who have not matured and particularly those who have psychological or psychiatric problems. Furthermore, if there is no equivalent of the condition, the young adult is lost in a world that has no understanding of his or her inherent special needs. The complex inter-relationship of bladder and kidney function discussed in this article illustrates the point.
Posterior urethral valves, for example, may be thought of as a simple problem of bladder outflow obstruction. The diagnosis is made by fetal ultrasound, obstruction is removed in infancy, problem solved. The adult urologist may be unaware that irreversible damage to the prostate, bladder, and kidneys occurs long before the boy is born. Adolescence and adulthood bring radical changes in bladder function, a high risk of renal failure, and sometimes problems with ejaculation and fertility.
There is an overwhelming need, therefore, for pediatric urologists to plan for their patients to transfer to adult care and for adult urologists to establish a sub-specialty to receive them. Not only is it necessary to have an understanding of the known long-term consequences of the conditions, but by keeping the patients together, the ‘adolescent urologist’ may be able to identify the unexpected ones – the unknown unknowns.
If this need is so obvious, why has it not happened already? Naturally, as in all medical problems, it is multifactorial.
- The need has only been recognized in the last 10 years or so. In the case of urological conditions, many of the children would anyway have died before reaching adulthood.
- The number of patients is small, though growing as most are now long-term survivors. It probably requires a population of 4 million people to support one pediatric urologist who will do only major surgery (that is excluding undescended testis, circumcision and the like). It would probably need a population of 10 million to support a urologist who only looked after adolescent and adult patients in this group.
- Much of the work is not surgical and so may not appeal to urologists. Most of the children have had some form of surgery, mainly reconstructive, and are in a stable state on transition. They then require monitoring until something changes such as intestinal bladder complications, renal failure, pregnancy, or the discovery of infertility or the development of an unknown unknown.
- Regardless of the healthcare system, there may be no funding. The patients themselves are unlikely to be wealthy or easily insurable. The state-funded systems may not be able to channel money into a single Institution to support patients from a very wide area.
- The patients themselves may not be enthusiastic. Adolescents tend to be rebellious and may resent regular visits for ‘monitoring.’ Adults may not be able to afford the travel involved.
- Adolescent urology cannot be practiced in isolation. Links with other physicians specializing in gynecology, nephrology, neurology, and orthopedics in young adults are essential.
In spite of these obstacles, the need will not go away. I have found that both patients and pediatric urologists recognize the desirability of long-term care. Sadly, after banging this particular drum for 30 years, I have not seen many ‘adolescent urologists’ established. It can only be hoped that, as always in the past, physicians will respond to a need, rather than just accepting that it is too difficult.
Written by:
Christopher R.J. Woodhouse, MD, FRCS, FEBU* as part of Beyond the Abstract on UroToday.com. This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.
*Emeritus Professor of Adolescent Urology
Centre for Urology, University College London Hospitals and the Centre for Nephrology
University College London Royal Free Campus
London, United Kingdom
Adult care of children from pediatric urology - Abstract
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