Transitioning Medical Care: Through Adolescence to Adulthood

153 Pages·2019·1.887 MB·English

by  Dan Wood, Alun Williams, Martin A. Koyle, Andrew D. Baird

Transitioning
Medical Care
Through Adolescence to
Adulthood
Dan Wood
Alun Williams
Martin A. Koyle
Andrew D. Baird
Editors
123
Transitioning Medical Care
Dan Wood • Alun Williams
MartinA. Koyle • AndrewD. Baird

Editors
Transitioning Medical Care
Through Adolescence to Adulthood
Editors
Dan Wood Alun Williams
Adolescent and Reconstructive Urology Paediatric and Transplant Surgery
University College London Hospitals Nottingham Children's Hospital QMC
London Nottingham
UK UK
Martin A. Koyle Andrew D. Baird
Hospital for Sick Children Adolescent and Reconstructive Urology
Toronto Aintree University Hospital
ON Liverpool
Canada UK
ISBN 978-3-030-05893-7 ISBN 978-3-030-05895-1 (eBook)
https://doi.org/10.1007/978-3-030-05895-1
Library of Congress Control Number: 2019934090
© Springer Nature Switzerland AG 2019
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Contents
1 Introduction: What Do Patients Worry About? . . . . . . . . . . . . . . . . . . . 1
Hadley Wood and Dan Wood
2 History of Adolescent Care in Urology . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Christopher Woodhouse
3 Adolescence: An Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
Joanna Begent, Jane Simpson, and Lara Gamper
4 Metrics and Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
Alun Williams and Abigail Jenkins
5 Information Transfer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Dan Wood
6 Managing the Parents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
William G. Reiner and Dominic Frimberger
7 The Importance of the Specialist Nurse Role as
Part of the Lifelong Care of Congenital Conditions . . . . . . . . . . . . . . . 63
Winnie Nugent
8 Barriers to Transition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77
Wendy F. Bower, D. Michael Whishaw, Caroline Dowling,
and Yves Heloury
9 Developmentally Appropriate Adolescent Health Care:
An Essential Prerequisite for Positive Transition Experiences . . . . . . . 85
Deborah Christie and Gail Dovey-Pearce
10 Quality and Safety in Transitional Urologic Care . . . . . . . . . . . . . . . . . 99
Jessica H. Hannick and Martin A. Koyle
11 Building the Multidisciplinary Transition Team . . . . . . . . . . . . . . . . . . 119
Andrew Baird
v
vi Contents
12 Political Concerns in Transitioning Medical Care . . . . . . . . . . . . . . . . . 125
Joshua D. Roth and Rosalia Misseri
13 Taking a Service Forward: The Adolescent and
Adult Care of Major Congenital Anomalies—The Move
from Adolescent to Lifelong Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139
Göran Läckgren, Anders Stenbäck, Gillian Barker,
and Johan Heinius
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149
Contributors
Andrew Baird, MB, ChB, FRCS (Urol) Department of Urology, Alder Hey
Children’s Hospital and Aintree University Hospital, Liverpool, UK
Gillian  Barker, MD Section of Pediatric Urology, Department of Pediatric
Surgery, Uppsala University Children’s Hospital, Uppsala, Sweden
Joanna Begent, MBBS, MA, MSc Department of Paediatric and Adolescent
Medicine, University College London Hospitals, London, UK
Wendy F. Bower, PhD, Grad Dip Epidemiol Biostats Continence Service,
Department of Medicine and Community Care, Royal Melbourne Hospital,
Parkville, VIC, Australia
Faculty Medicine, Dentistry and Health Sciences, University of Melbourne,
Parkville, VIC, Australia
Deborah Christie, PhD, Dip Clin Psych Department of Child and Adolescent
Psychological Services, University College London Hospital NHS Foundation
Trust, London, UK
Gail Dovey-Pearce, BA (Hons), Dip Clin Psych Department of Child Health (c/o
Health Psychology, DRC), North Tyneside General Hospital, Northumbria
Healthcare NHS Foundation Trust, North Shields, UK
Caroline Dowling, MBBS, MS, FRACS (Urol) Department of Urology, Eastern
Health, Box Hill, VIC, Australia
Dominic Frimberger, MD Section of Pediatric Urology, Department of Urology,
University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA
Lara Gamper, MD Department of Adolescent Medicine, University College
London Hospitals, London, UK
Jessica H. Hannick, MD, MSc Department of Pediatric Urology, McMaster
University Children’s Hospital, Hamilton, ON, Canada
Johan  Heinius, MD Department of Urology, Uppsala University Hospital,
Uppsala, Sweden
vii
viii Contributors
Yves Heloury, MD Department of Urology, Royal Children’s Hospital, Parkville,
VIC, Australia
Abigail Jenkins, MBChB, MRCS School of Medicine, University of Leicester,
George Davies Centre, Leicester, UK
Martin A. Koyle, MD, MSc, FAAP, FACS, FRCSC, FRCS Division of Pediatric
Urology, The Hospital for Sick Children, Toronto, ON, Canada
Göran Läckgren, MD, PhD Section of Pediatric Urology, Department of Pediatric
Surgery, Uppsala University Children’s Hospital, Uppsala, Sweden
Rosalia  Misseri, MD Department of Urology, Riley Hospital for Children,
Indianapolis, IN, USA
Winnie Nugent, BSc (Oncology) Department of Urology, Guys and St Thomas
Hospital, London, UK
William G. Reiner, MD Section of Pediatric Urology, Department of Urology,
University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA
Division of Child and Adolescent Psychiatry, Department of Psychiatry (Adjunct),
University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA
Joshua  D.  Roth, MD Department of Urology, Riley Hospital for Children,
Indianapolis, IN, USA
Jane Simpson, MA, CANTAB, MBBS Department of Adolescent Medicine,
University College London Hospitals, London, UK
Anders  Stenbäck, MD, PhD Section of Pediatric Urology, Department of
Pediatric Surgery, Uppsala University Children’s Hospital, Uppsala, Sweden
D. Michael Whishaw, MB, BS, FRACP Continence Service, Department of
Medicine and Community Care, Royal Melbourne Hospital, Parkville, VIC,
Australia
Department of Urology, Royal Melbourne Hospital, Parkville, VIC, Australia
Alun  Williams, MA, BM, BCh, FRCS Department of Paediatric Urology,
Nottingham University Hospitals NHS Trust, Queen’s Medical Centre, Nottingham,
UK
Dan  Wood, PhD, FRCS (Urol) Department of Urology, University College
London Hospitals, London, UK
Hadley Wood, MD Cleveland Clinic, Glickman Urological Institute, Cleveland,
OH, USA
Christopher  Woodhouse, MB, FRCS, FEBU University College London,
London, UK
Introduction: What Do Patients 1
Worry About?
Hadley Wood and Dan Wood
Introduction
This book is written by a group who attended a meeting focused on transition
in Toronto in 2011, many of the attendees and contributors are urologists. Thus,
many of the examples discussed are based on urological diseases or patients.
The very nature of this work involves topics which become increasingly
relevant as a young person evolves from childhood into adulthood, including
sexuality and fertility. The authors and editors all hope that you have picked up
this book because you are interested in this critical developmental stage involv-
ing transition to adulthood. The message must not be that success with this
complex process can be achieved by a lone clinician. Particularly at this time
of complex developmental, psychological, endocrinologic, and physical
change, a multidisciplinary team is necessary to meet the medical needs of the
whole patient.
In short, the focus of this book is to help the reader understand what is nec-
essary medically and developmentally for young people affected with
H. Wood
Cleveland Clinic, Glickman Urological Institute, Cleveland,
OH, USA
e-mail: [email protected]
D. Wood (*)
Department of Urology, University College London Hospitals,
London, UK
e-mail: [email protected]
© Springer Nature Switzerland AG 2019 1
D. Wood et al. (eds.), Transitioning Medical Care,
https://doi.org/10.1007/978-3-030-05895-1_1
2 H. Wood and D. Wood
congenital conditions to be successful as they migrate from a paediatric to an
adult healthcare environment. More importantly we aim to help young adults
come to terms with a developing role in their own health, diagnosis and ongo-
ing care.
Why Does Everything Have to Change, and Why Can’t I Keep
My Old Doctor?
It makes sense to ask why patients are expected to move from a trusted (for the
patient) group of healthcare providers to some who are unknown at a time when
everything else is changing for them. Surely, most of the people reading this book
will recall their own adolescence—a period of our lives when consequences of bad
decisions were often not considered and questioning authority was normal.
Compound these developmental changes with physiological changes happening at
break-neck speed: hair growth, secondary sexual development, apocrine gland
changes, etc. In short, we are asking these young people who carry a significant
diagnosis, and all the concerns that emanate from that, with them to break some of
the most significant bonds they have formed (outside their family) and to engage
with a totally new group of people who appear to think they know everything but
have yet to prove that, at a time when our patient has more concerns and questions
than they have ever had.
Why? Because We Have to
Just as we would not expect a general surgeon to perform orthopedic surgery,
it is a simple reality that medicine is increasingly complex and a single indi-
vidual cannot have the expertise or ability to provide excellent care across the
entire life span. Taking good care of patients requires not only knowledge of
subject area and technical skill, but equipment, facilities, communication
skills, and other subspecialists tailored towards the unique anatomic and physi-
ologic needs of the patient. A system geared towards providing excellent medi-
cal care for a 5-year-old cannot fit the needs of a 25-year-old. Moreover, even
if the system -needs are not different, the patient’s needs evolve. Urologically
speaking, the 5-year-old patient requires care to facilitate continence and renal
preservation. The 25-year-old, on the other hand, needs the full spectrum of
urologic expertise, including all of the above and sexual function and fertility
assistance [1].
It is important to remember that the move from one doctor to another, or the
move from one building to another, is transfer, not transition. Transfer constitutes
perhaps the smallest part of the overall process. Transition takes years to prepare for
and involves assisting the patient in coming to terms with his/her diagnosis and
understand that he/she is ultimately responsible for his/her health and destiny. At the