Insights into MAnaging Growth for Endocrine Nurses

Transcription

1 Insights into MAnaging Growth for Endocrine Nurses October 2017, Toulouse, France An Independent Medical Education Event for Paediatric Nurses IMAGE-brochure-A indd 1 15/09/ :00

2 Welcome to IMAGE 2017 Dear Delegate, Bienvenue à Toulouse! The Insights into MAnaging Growth for Endocrine nurses (IMAGE) 2017 Symposium, organised by Springer Healthcare IME and EXCEMED, is an important opportunity for further training of nurses involved in paediatric endocrinology practice. More than ever before, we welcome paediatric endocrine nurses from all over the world. The major theme of the symposium is related to the management of adrenal and growth disorders and specific aspects of behavioural challenges i.e., bullying, in children. There will be plenary lectures and case studies, followed by plenty of time for discussion, as well as parallel break-out sessions focusing on adrenal disorders to provoke lively debates. This year is dedicated to exciting hot topics such as adrenal disease, GH therapy and psychological bullying. There will be an emphasis on informality, discussion and interchange of views, and interaction between delegates and faculty. The IMAGE symposium offers an important opportunity for nurses to be updated on new developments in the growth field and to learn about the important opportunities that paediatric endocrinology can offer to nurses interested in becoming involved in this exciting branch of paediatrics. We hope that you enjoy this highly informative symposium. Kate Davies Chair 2 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 2 15/09/ :00

3 Table of Contents 4 Educational Grant, Joint providers and CME 5 Programme 9 Venue, Location and Map 10 General Information 11 Organising Committee 12 Speaker Biographies 17 Aims and Learning Objectives 23 Notes Springer Healthcare IME EXCEMED 3 IMAGE-brochure-A indd 3 15/09/ :00

4 Educational Grant This independent programme is made possible thanks to an educational grant received from Merck KGaA, Darmstadt, Germany. Joint providers Springer Healthcare Ltd - Independent Medical Education Project Manager: Marie Le Solliec T +44 (0) F +44 (0) marie.lesolliec@springer.com EXCEMED - Excellence in Medical Education Programme and Relations Manager: Flaminia Masprone T F flaminia.masprone@excemed.org Continuing Medical Education This continuing education activity has been approved by the International Council of Nurses (ICN) for the award of 9.0 International Continuing Nursing Education Credits (ICNECs). As a member of the Good CME Practice Group, Springer Healthcare IME and EXCEMED create and deliver truly independent and well-respected education in compliance with European CME standards and codes of practice. 4 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 4 15/09/ :00

5 Programme WEDNESDAY 11 OCTOBER 19:30 22:30 Welcome Dinner THURSDAY 12 OCTOBER UPDATE IN ADRENAL DISEASE, GROWTH DISORDERS AND BEHAVIOURAL CHALLENGES FOR THE PAEDIATRIC ENDOCRINE NURSE SPECIALIST 09:00 09:10 Welcome, introduction and objectives of the symposium Kate Davies Session 1: Adrenal Disorders Chairs: Wendy Schwarz and Martin Savage 09:10 09:50 Plenary 1 Congenital adrenal hyperplasia key messages Ieuan Hughes 09:50 10:30 Plenary 2 Paediatric Cushing s Syndrome Helen Storr 10:30 10:50 Coffee Break Springer Healthcare IME EXCEMED 5 IMAGE-brochure-A indd 5 15/09/ :00

6 Session 2: Acute and Chronic Adrenal Disorders 10:50 11:30 Two parallel breakout groups each comprising the following presentations: Breakout session 1 Group A Chairs: Helen Storr and Wendy Schwarz i) Adrenal Disorders: Sick Day Rules Mandy Whitehead ii) Audit of Adrenal Function Tests Kate Davies Breakout session 1 Group B Chairs: Stephen Shalet and Christine Derycke i) Adrenal Tumours Martin Savage ii) Suppression and Recovery of Hypothalamo-pituitary-adrenal Axis Tanya Urquhart 11:30 11:35 Presenters change rooms 11:35 12:15 Two parallel breakout groups each comprising the following presentations: Breakout session 2 Group A Chairs: Stephen Shalet and Christine Derycke i) Adrenal Tumours Martin Savage ii) Suppression and Recovery of Hypothalamo-pituitary-adrenal Axis Tanya Urquhart Breakout session 2 Group B Chairs: Helen Storr and Wendy Schwarz i) Adrenal Disorders: Sick Day Rules Mandy Whitehead ii) Audit of Adrenal Function Tests Kate Davies 12:15 13:15 Lunch 6 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 6 15/09/ :00

7 Session 3: Adrenal Disorders and DSD Chairs: Ieuan Hughes and Tanya Urquhart 13:15 13:45 Plenary 3 Adrenal Insufficiency how common is it? Stephen Shalet Adrenal/DSD Nurse Presentations 13:45 14:05 CAH Presenting as DSD Kate Davies 14:05 14:25 46 XY Patient with DSD Wendy Schwarz 14:25 14:40 Panel Discussion 14:40 15:00 Coffee Break Session 4: Psychological Bullying Chairs: Andrew Dwyer and John Weinman 15:00 15:45 Plenary 4 Comprehensive patient care: bullying and the paediatric endocrine patient Andrew Dwyer 15:45 16:15 Case presentation Christine Derycke Case presentation Mandy Whitehead 16:15 16:30 Panel Discussion 16:30 16:45 Summary and Key Messages from Day 1 Kate Davies 19:30 Meet-up in the hotel lobby for transfer to Conference Dinner Springer Healthcare IME EXCEMED 7 IMAGE-brochure-A indd 7 15/09/ :00

8 FRIDAY 13 OCTOBER Session 5: Adherence to GH Therapy Chairs: Stephen Shalet and Kate Davies 09:00 09:30 Plenary 5 Optimal conditions for good adherence to treatment John Weinman 09:30 09:50 Nurse case presentation Christelle Tressens* *French to English translation 09:50 10:10 Nurse case presentation Wendy Schwarz 10:10 10:30 General discussion 10:30 10:50 Coffee Break Session 6: Update of GH Therapy in Licensed Conditions Chairs: Ieuan Hughes and Christine Derycke 10:50 11:30 Plenary 6 GH treatment overview key messages revisited Martin Savage 11:30 12:15 The GH journey: Interactive quiz and Panel discussion Chair: Panel: Martin Savage Stephen Shalet, Mandy Whitehead and Wendy Schwarz 12:15 12:30 Summary of Symposium and Closing Remarks Kate Davies 12:30 Closing lunch 8 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 8 15/09/ :00

9 Venue, Location and Map Conference Venue The meeting and delegate accommodation are at the Radisson Blu Hotel Toulouse Airport. The hotel address is 2 Rue Dieudonné Costes, Blagnac, France. Plenary room is called ICARE 1&2 and is located on the ground floor of the Radisson Blu Hotel. Airport Transfers Transfers from/to the airport will be provided for all delegates. Please look for the Radisson Blu Hotel shuttle bus located at the airport exit Hall B. Springer Healthcare IME EXCEMED 9 IMAGE-brochure-A indd 9 15/09/ :00

10 General Information Registration Delegates should register at the Registration desk located on the ground floor of the Radisson Blu Hotel in the foyer. Registration will be open from 8.30 to 9.00 on Thursday, 12 October. Pre-registration will also be available on Wednesday, 11 October from to at the Registration desk located on the ground floor of the Radisson Blu Hotel in the foyer. Welcome dinner The welcome dinner will be served on Wednesday, 11 October from 19:30 to at the Blu Lounge located on the terrace of the Radisson Blu Hotel. Conference dinner The conference dinner will take place on Thursday, 12 October at 20:00 at the Restaurant Au Pois Gourmand (3, Rue Emile Heybrard Toulouse). Delegates are asked to gather in the hotel lobby at The restaurant is located 15 min. by transfer from the hotel (please see the map for details). Lunches Lunch will be served at the Blu Lounge located on the terrace of the Radisson Blu Hotel. Dedicated signs will help delegates find the space. Luggage Check-out is at Delegates have the option of storing luggage at the reception following check-out. Please ask the front desk of the hotel to make arrangements. Who to contact for help If you have any problems or questions during the meeting, please contact (mobile phone: ). CNE Certificate This continuing education activity has been approved by the International Council of Nurses (ICN) for the award of 9.0 International Continuing Nursing Education Credits (ICNECs). Delegates will receive certificates by after the symposium. 10 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 10 15/09/ :00

11 Organising Committee Kate Davies Chair Senior Lecturer in Children s Nursing London South Bank University, UK Kate has been a qualified children s nurse since 1994, and has worked in general paediatrics, paediatric ICU and neuroscience before specialising in paediatric endocrinology in During this time she has focused on advancing her education by studying for a BSc (Hons) in Psychology, an MSc in Occupational Psychology and an MSc in Professional Healthcare Research, as well as advancing clinical skills including Non Medical Prescribing. Kate has become well-known internationally within paediatric endocrinology, having presented and published widely. Her experience as a Clinical Nurse Specialist in Paediatric Endocrinology has led her to work with some of the world s leading experts across several London NHS Trusts. She has subspecialised in growth and puberty, neuro-endocrine late effects of childhood brain tumours, adrenal disorders and disorders of sex development. Kate has always been passionate about educating staff and students, and started at London South Bank University, London, UK, a leading University in training children s nurses, as a Senior Lecturer in Children s Nursing in September She recently launched new BSc/MSc module Principles of care for the child and young person in endocrinology in January Her role has now expanded to that of Course Director for the MSc Children s Advanced Nurse Practitioner pathway, and also leads the MSc module in Applied Clinical Physiology for neonates and children. Martin Savage Co-Chair Emeritus Professor, Professor of Paediatric Endocrinology Barts and the London School of Medicine & Dentistry, UK Martin Savage is Emeritus Professor of Paediatric Endocrinology at William Harvey Research Institute, Barts and the London School of Medicine & Dentistry in London. He was head of the Paediatric Endocrine Unit at Barts and the London School of Medicine from 1982 to He is a clinician with wide experience and has clinical and research interests in the field of growth disorders, specifically those with abnormalities in the growth hormone-igf-1 axis. His main research field has been the phenotype:genotype relationships of GH-IGF-1 axis defects. He published the first human case of an IGF-1 gene defect in the New England Journal of Medicine in His other clinical interests are Cushing s syndrome and growth in chronic inflammatory diseases. He was General Secretary of the European Society for Paediatric Endocrinology (ESPE) from 1997 to Professor Savage has lectured in 54 countries worldwide and has published over 430 original articles, reviews, textbook chapters and books. In 2007, he was awarded the ESPE Andrea Prader Prize for contributions to paediatric endocrinology. He continues to see patients and to lecture nationally and internationally. Springer Healthcare IME EXCEMED 11 IMAGE-brochure-A indd 11 15/09/ :00

12 Speaker Biographies Christelle Derycke Chair of ESPEN (European Society of Paediatric Endocrinology Nurses) Clinical Study and Research Nurse for BESPEED (Belgian Society for Paediatric Endocrinology and Diabetology) Her nursing career began as a home nurse after a nursing science baccalaureate at Sint-Jansinstitute in Bruges. After obtaining a certificate as a nurse practitioner in oncology, palliative guidance and paediatric endocrinology, she went on to become a coordinator of clinical studies. Since 2000, she has been working directly with children treated with growth hormone therapies for different indications. Additionally, she is well respected in the field of psychological support for children who have been treated with growth hormone showing that through good follow-up, it is possible to improve trust in the treatment and enhance the quality of life of these children. Andrew Dwyer Clinical Specialist, Department of Endocrinology, Diabetes and Metabolism, Centre Hospitalier Universitaire Vaudois, Switzerland Dr. Dwyer is a board certified Family Nurse Practitioner with 17+ years of experience in endocrinology and translational research at the Massachusetts General Hospital (MGH) in Boston (USA) and the University Hospital of Lausanne (CHUV) in Switzerland. He received his Bachelor of Science in Human Development and Family Studies from Cornell University (USA), completed his Masters in Nursing at the MGH Institute of Health Professions (USA) and received his PhD from the University of Lausanne (Switzerland). In 2016, he was appointed assistant professor in the Faculty of Biology and Medicine of the University of Lausanne and recently joined the Connell School of Nursing at Boston College (USA). He specializes in genetics and disorders of growth/ puberty and has authored/co-authored >50 articles on these topics. He is the Vice-Chair of the European Society of Paediatric Endocrine Nursing and a nursing board member of the European Society of Endocrinology. As a member of the research committee of the Pediatric Endocrine Nursing Society he co-authored the PENS position statement on bullying. In clinic he has helped develop structured transitional programs for young adults with endocrine conditions and his current research focuses on the interface of health disparities, patient engagement, digital solutions and empowerment. 12 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 12 15/09/ :00

13 Ieuan Hughes Emeritus Professor of Paediatrics, University of Cambridge, UK Ieuan Hughes is Emeritus Professor of Paediatrics at the University of Cambridge. He graduated in Medicine from Cardiff University and undertook postgraduate training in London, Canada and Bristol before being appointed a Senior Lecturer and then Reader, at Cardiff University Medical School and subsequently to the Foundation Chair in Paediatrics at Cambridge. Professor Hughes has a major interest in disorders of sex development (DSD) with a particular focus on congenital adrenal hyperplasia and syndromes of androgen insensitivity. He coordinated the International Consensus on DSD which is now universally accepted for its nomenclature, classification and goals for management. He has established a large Cambridge DSD Database. Professor Hughes is Past-Secretary and President of the European Society for Paediatric Endocrinology and recipient of its Andrea Prader Prize Award. He is a Fellow of the Academy of Medical Sciences, the Learned Society of Wales and was awarded the James Spence Medal of the Royal College of Paediatrics and Child Health. He is a Trustee of Newlife, the Charity for Disabled Children and for dsdfamilies.org. Wendy Schwarz Clinical Resource Nurse, Endocrine Clinic, Alberta Children s Hospital, Calgary, Canada Wendy Schwarz is a Clinical Resource Nurse in the Endocrine Clinic at the Alberta Children s Hospital, in Calgary, Alberta, Canada. Wendy has held that position for 14 years. Her clinical practice includes; general Endocrine clinics, Turner clinics, endocrine testing, bone health programs, research and Nurse-run screening clinics. Prior to this position, Wendy has worked in NICUs and PICUs in Toronto, Winnipeg and Calgary. Wendy Is the Immediate Past-President of the Canadian Paediatric Endocrine Nurses (CPEN/ICEP) and past Secretary of the Canadian Paediatric Endocrine Group (CPEG/ GCEP). Wendy is also a member of the Paediatric Endocrine Nursing Society (PENS) Springer Healthcare IME EXCEMED 13 IMAGE-brochure-A indd 13 15/09/ :00

14 Stephen Shalet Emeritus Professor of Endocrinology; Honorary Consultant Endocrinologist University of Manchester; Christie Hospital, UK Professor Shalet completed a BSc in Physiology at London University and qualified in medicine at the Royal London Hospital. Hospital medical training posts in London and Bristol were followed by an appointment as Research Fellow in Endocrinology at Christie Hospital, Manchester. Professor Shalet has extensive research interests in the late endocrine effects following treatment of cancer, pituitary disorders and in particular abnormalities of growth hormone (GH) secretion. He is the author/coauthor of over 500 articles and more than 200 of these are related to clinical disorders of the GH-IGF-1 axis and/or therapeutic use of GH therapy. Previous positions include Chairman of the Strategic Planning Committee of the European Society of Paediatric Endocrinology, Co-Editor of the first edition of the Oxford Textbook of Endocrinology and a member of the Council of the Society for Endocrinology. Helen Storr Reader & Honorary Consultant in Paediatric Endocrinology, Barts and the London NHS Trust, UK Dr Helen Storr is a Reader and Honorary Consultant in paediatric endocrinology at St. Bartholomew s and the Royal London Hospitals, London UK. She completed a PhD in molecular endocrinology at the William Harvey Research Institute, Barts and the London School of Medicine funded by a Wellcome Trust Research Training Fellowship. In 2006, she was awarded a HEFCE Clinical Senior Lectureship and appointed Senior Clinical Lecturer and Honorary Consultant in Paediatric Endocrinology at Barts and the Royal London Hospital. In 2011, she was awarded the European Society for Paediatric Endocrinology (ESPE) Young Investigator Award and in 2014, she was promoted to Reader in Paediatric Endocrinology. Her clinical paediatric endocrine practice is broad with key clinical interests including paediatric Cushing s syndrome, disorders of growth and adrenal disorders. She leads an active programme of clinical and laboratory research and directs an international genetic diagnostic service for patients with severe short stature. Her research focuses on the molecular basis of adrenal disorders and the genetic mechanisms / phenotype: genotype relationships of GH and IGF-1 insensitivity. 14 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 14 15/09/ :00

15 Christelle Tressens Pediatric nurse, Hôpital des Enfants, Purpan, Toulouse, France Christelle Tressens works as a pediatric nurse at Toulouse Children Hospital in the consultations department. She has been a nurse for 14 years and a pediatric nurse for 5 years. She has worked as a specialised nurse in growth hormone for two years and a half. In 2015, she and her group followed approximately 1,250 children and teenagers treated with growth hormone. For two years, with a team of paediatrician endocrinologists and three nurses, they have set up a paediatric therapeutic educational project. Their aim is to improve the care of children treated with growth hormone and to facilitate improved adherence to treatment. Tanya Urquhart-Kelly Clinical Nurse Specialist, Sheffield Children s NHS Foundation Trust, UK Tanya Urquhart-Kelly is child field nursing lecturer at Sheffield Hallam University. She worked previously in the NHS for 28 years with her most current clinical role being that of Macmillan Clinical Nurse Specialist (CNS) in Paediatric and Teenage & Young Adult Late Effects based at Sheffield Children s NHS Foundation Trust UK. She graduated from Sheffield School of Nursing and Midwifery in March 1993 as an RGN/ RSCN and has worked in a variety of roles within the field of paediatric oncology/ haematology nursing since qualifying. She was awarded distinction and the faculty prize for her contemporary Masters Degree in the care of teenagers and young adults with cancer from Coventry University. She also holds certificates in endocrine nursing and research studies. Her CNS role involved the endocrine care for survivors of childhood cancer; including nurse led clinics, nurse prescribing and the development of preparation for transition clinics including the development of a transition DVD. Springer Healthcare IME EXCEMED 15 IMAGE-brochure-A indd 15 15/09/ :00

16 John Weinman Professor of Psychology as Applied to Medicines, King s College London, UK Professor John Weinman PhD, FBPsS, D.Sc., FEHPS, FABMR, FAcSS. John Weinman is Professor of Psychology as applied to Medicines at the Institute of Pharmaceutical Sciences and the Institute of Psychiatry, Psychology & Neuroscience in King s College London, and is also Head of Health Psychology (Europe) for Atlantis Healthcare. In his research he has investigated the influence of psychological processes on health, illness and health care delivery. The main focus of this has been on the ways in which patients beliefs about their illness and treatment affect self-regulation and selfmanagement across a wide range of major physical health problems. He is particularly interested in understanding the reasons underlying non-adherence to treatment and in developing effective interventions for improving medicines use. This work has also resulted in the development of a number of widely used measures and cognitively-based interventions, which have been shown to be effective in improving adherence to treatment, recovery and quality of life. He also teaches undergraduate and postgraduate medical, psychology and pharmacy students in Kings College London, and is the author of a large number of books and papers in peer review journals. He has been instrumental in developing Health Psychology as a discipline and a profession within the UK and Europe, and was the founding editor of Psychology & Health: an international journal. He currently holds visiting professorships in Denmark, Ireland, and University College London and was recently given a lifetime achievement award and an Honorary Fellowship by the British Psychological Society. He is a Fellow of the European Psychological Society, the American Academy of Behavioral Medicine Research, and the Academy of Social Sciences. Amanda Whitehead Endocrine Specialist Nurse, The Leeds Children s Hospital, UK She has worked as a Children s Endocrine Specialist Nurse for 12 years. They are a large tertiary centre caring for children with a wide variety of endocrine conditions. Her main areas of interest are in transition services and late effects of cancer treatment. Outside work she enjoy travelling and keeping fit by a variety of different activities including swimming, cycling and running and last year competed in her first super sprint triathlon. 16 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 16 15/09/ :00

17 Aims and learning objectives Session 1: Adrenal Disorders Session overview The most important paediatric adrenal disorder that nurses will become aware of is congenital adrenal hyperplasia (CAH). CAH is a genetic disease affecting boys and girls, which is caused by the deficiency of an enzyme in the adrenal steroid production pathway resulting in the build-up of precursor steroids and a deficiency of cortisol production. Professor Ieuan Hughes has worked with patients with CAH for many years. He will explain the pathophysiology, clinical presentations from infancy, in childhood and during adolescence and discuss advances in therapy. Paediatric Cushing s disease is much less common than CAH. It comprises a range of conditions in which the hypothalamic-pituitary adrenal axis is disturbed. The common feature is the over-production of glucocorticoid (cortisol-like) steroids, which causes the resulting clinical syndrome of Cushing s syndrome. Dr Helen Storr, who leads the clinical paediatric Cushing s referral service at Barts and the Royal London Hospitals, will explain the aetiology, clinical and biochemical features and advances in therapy for the different forms of Cushing s syndrome. Learning objectives At the end of this session, participants will understand: What CAH is How it presents differently in boys and girls How to diagnose CAH The principles behind its treatment, i.e., balanced replacement with steroids in order to provide cortisol and reduce androgens, avoiding over-treatment so that linear growth can continue within normal limits Optimal management in adolescence and adulthood How to diagnose Cushing s syndrome Clinical and auxological pointers to the diagnosis Tests to determine which form of Cushing s the patient might have The principles of management of adrenal versus pituitary Cushing s Therapeutic goals and outcome Springer Healthcare IME EXCEMED 17 IMAGE-brochure-A indd 17 15/09/ :00

18 Session 2: Acute and Chronic Adrenal disorders Session overview This is a break-out session with two symposia running in parallel. Each will be repeated so all delegates can hear them. In the first of these (Room A), two topics will be presented by nurses: Adrenal sick-day rules and Audit of adrenal function tests. Adrenal sick-day rules will describe the procedures necessary to keep a young child with adrenal disease out of hospital and out of danger despite having an acute illness. Children who have adrenal failure require increased doses of steroids in order to maintain their blood pressure and general circulatory status during acute illness. If they are unable to keep down oral steroid therapy, IV infusion with IV hydrocortisone may be necessary. The second talk is entitled Audit of adrenal function tests. Nurses have the responsibility for adrenal function tests. These are principally the short synacthen test, insulin tolerance test with hypoglycaemia, hydrocortisone day curve and some tests for Cushing s syndrome. An audit and explanation of the individual tests will be discussed. The second breakout session (Room B) addresses two other topics, namely Adrenal tumours and Suppression and recovery of Hypothalamo-pituitary-adrenal Axis. Adreno-cortical tumours are rare in children. They usually present with signs of mixed hormone secretion. Very rarely (~5%) there may be a pure cortisol-secreting tumour, but the majority present with excess levels of cortisol, androgens and oestrogens. The principles of management of adrenal tumours will be covered. Learning objectives At the end of these sessions, participants will understand: Principles of management of sick children with adrenal insufficiency Steroid medications and fluid balance in order to preserve circulation and blood pressure Indications for emergency admission to hospital Common adrenal function tests such as the synacthen test, insulin tolerance test, glucagon test and hydrocortisone day curve Their procedures and interpretations Origin, presentation and biochemical findings of adreno-cortical tumours Principles of management, i.e., surgery versus radiotherapy versus chemotherapy Characteristics of recovery of the hypothalamo-pituitary-adrenal axis Diagnosis of recovery and need to maintain steroid cover for maintenance and surgical/stress situations 18 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 18 15/09/ :00

19 Session 3: Adrenal Disorders and DSD Session overview Two separate topics are covered in this session. In the adrenal component, the incidence of adrenal insufficiency, which may be subclinical or asymptomatic, will be discussed. Professor Stephen Shalet, an adult endocrinologist, has wide experience in this field. Which patients should be investigated, by synacthen test, am cortisol or cortisol day curve, and how important is it to diagnose and treat marginal adrenal insufficiency? The other topic is disorders of sexual development (DSD). Two cases will be presented by nurses. The first will be a case of 46XX genital virilisation due to CAH. The management principles of such a patient will be debated. The second case will be a 46XY subject with incomplete virilisation due to the presence of a mutation of the androgen receptor. The session will be chaired by Professor Ieuan Hughes who is enormously experienced in this field. Such cases are complex from the clinical, psychological, endocrinological and surgical perspectives. Learning objectives At the end of these sessions, participants will understand: Signs and symptoms of adrenal insufficiency Its prevalence and diagnosis Indications for steroid replacement Female presentation of the 46XX child with ambiguous genitalia Management principles The incomplete 46XY male Gender assignment Surgical correction Long-term complications such as gonadal tumours Springer Healthcare IME EXCEMED 19 IMAGE-brochure-A indd 19 15/09/ :00

20 Session 4: Psychological Bullying Session overview Psychological bullying related to endocrine disease is a very important topic and one that may confront paediatric endocrine nurses. The presence of bullying at school related to disorders such as short stature, tall stature, obesity, and precocious or delayed puberty is not uncommon. It is a cause of great distress. Andrew Dwyer has experience and expertise in this field and he will give an overview presentation highlighting the major challenges, particularly to nurse specialists. The session will be chaired by Professor John Weinman, Consultant child psychiatrist. Two case presentations on this topic will be given by nurses. Learning objectives At the end of these sessions, participants will understand: The nature of psychological bullying related to endocrine disease Its signs and symptoms Its detection and diagnosis Approaches by nurses to address the issues 20 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 20 15/09/ :00

21 Session 5: Adherence to GH Therapy Session overview Problems related to adherence to GH therapy are becoming established as major components of GH therapy in children. Poor adherence is common and it can significantly affect the responses to treatment, both short- and long-term. Professor John Weinman will give a lecture on Optimal conditions for good adherence to treatment. This will set the scene in terms of identification and discussion of risk factors and conditions likely to predispose to poor adherence. Understanding of these allows prediction and early detection of poor adherence and eventually its prevention. Two subsequent case presentations by nurses will highlight the role of specialist nurses in detection and management of poor adherence. Learning objectives At the end of these sessions, participants will understand: What poor adherence to GH therapy is How common it is Why it is important When it is most likely to occur How it can be detected How this topic should be addressed clinically What training is necessary for this to be done effectively What difference detection and prevention of poor adherence will make to treatment outcome Springer Healthcare IME EXCEMED 21 IMAGE-brochure-A indd 21 15/09/ :00

22 Session 6: Update of GH Therapy in Licensed Conditions Session overview Effective management of growth disorders is one of the key therapeutic goals in paediatric endocrine patients. Some disorders are not amenable to GH therapy, in which case skilled support and psychological encouragement are essential. In conditions which can be treated with GH, key messages are emerging that increase the likelihood of a favourable response to therapy. Professor Martin Savage will give an overview entitled GH treatment overview - key messages revisited. The presentation will include guidelines related to the following topics: The choice of subject and the commitment to diagnosis is very important for good response to treatment. A committed diagnosis allows the clinician to plan optimally using predictive variables, accurate choice of GH dose and a keen anticipation of the likely response. Assessment of response to 12 months of therapy allows reassessment and change of strategy or GH dose if this is inadequate. The positioning of the diagnosis on the axis of the continuum model of the GH-insulin-like growth factor-1 axis defects also allows improved prediction of likely response. The session will conclude with a multiple-choice quiz related to GH-related diagnostic and therapeutic issues. This will cover a wide field of growth disorders, emphasizing that it is a key general paediatric as well as an endocrine topic. Questions will cover topics of diagnostic and therapeutic relevance. Learning objectives At the end of these sessions, participants will understand: Aims of GH therapy Decision-making in terms of GH dose and predictors of response What constitutes a good and a poor/unsatisfactory response Assessment at 12 months and strategy for management of poor response Reasons for poor response Expected responses in different licensed growth disorders such as GH deficiency, Turner syndrome, small for gestational age, etc. Role of the paediatric specialist nurse in interacting with the family to identify factors relevant to the expected growth response 22 IMAGE, Toulouse, France 2017 IMAGE-brochure-A indd 22 15/09/ :00

23 Notes Springer Healthcare IME EXCEMED 23 IMAGE-brochure-A indd 23 15/09/ :00

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