EUROPEAN SYMPOSIUM ON LATE COMPLICATIONS AFTER CHILDHOOD CANCER - 19-20 APRIL 2007 LUND SWEDEN
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EUROPEAN SYMPOSIUM ON LATE COMPLICATIONS AFTER CHILDHOOD CANCER 19–20 APRIL 2007 LUND SWEDEN PROGRAMME AND ABSTRACT BOOK www.eslccc2007.com
Table of Contents Welcome 3 Programme 4 Speakers 7 Useful information & social events 8 Venue overview 9 List of participants 10 Abstracts A - Invited Speakers 14 Abstracts C - Cognition, Psychology and Quality of Life 20 Abstracts E - Endocrinology, Growth and Metabolism 27 Abstracts F - Follow-up 34 Abstracts G - Gonads and Fertility 38 Abstracts M - Miscellaneous 45 Index of Authors 53 Map of Lundagård 55 Sponsors
Welcome to Lund and Sweden W Organizing committee elcome to Lund – “the City of Ideas”, located in the centre of the Öresund region. Lund offers a rich selection of cultural experiences, with the Cathedral, Christian Moëll, chairman Scandinavia’s most distinguished church in the Romanesque style, at centre stage. christian.moell@skane.se The events are many and varied, with Lund’s strong tradition of comedy and farce making Veronica Bojsen its mark on many of them. In Lund a creative, dynamic and innovative cultural spirit is alive verabojsen@hotmail.com and well. Lund has charm and wit and will make you feel welcome. Thomas Wiebe thomas.wiebe@skane.se ESLCCC April 19-20 2007 The continuing success of the treatment for childhood cancer is an important medical ac- Lars Hjorth hievement. It has however become increasingly evident that some survivors may pay a lars.hjorth@skane.se considerable price for their cure. Late effects after childhood cancer often have a gradual and subtle presentation that may Scientific committee involve any organ system of the body. The follow-up will often require cooperation between several different medical specialities. Hamish Wallace, chairman hamish.wallace@luht.scot.nhs.uk The European Symposium on Late Complications after Childhood Cancer in Lund, ESLCCC 2007, is the first major European meeting to focus on several different aspects of this im- Christian Moëll portant and developing clinical area. christian.moell@skane.se The meeting is organized from the Department of Paediatrics at the University Hospital, Thomas Wiebe which has a long tradition in the follow-up of late effects after childhood cancer. thomas.wiebe@skane.se Professor Stanislaw Garwicz has pioneered research in this field and this Symposium is held in his honour on his retirement from the Division of Paediatric Oncology at the Uni- versity Hospital in Lund. Christian Moëll On behalf of the Organizing Committee
European Symposium on Late Complications after Childhood Cancer Lund April 19–20 2007 Thursday April 19, 2007 TIME SUBJECT SPEAKER ABSTRACT 09:00 Welcome Christian Moëll 09:10 Introduction of Morning session Kjeld Schmiegelow 09:20 Late effects - where do we go from here? Daniel Green A:01 10:00 Modifications of treatment to minimize Guenther Schellong A:02 complications, the Hodgkin experience 10:30 Coffee 11:00 Antracycline cardiotoxicity in children – Leontien Kremer A:03 What is the risk and how can we avoid it? 11:30 Discussion Chairman: K. Schmiegelow 12.00 Poster viewing 12.30 Lunch 13:30 Children’s Cancer Foundation 25 years Olle Björk 13:40 Introduction of Afternoon session Olle Björk 13:50 Is childhood cancer a chronic disease? Guilio D’Angio A:04 14:30 Presentation of selected posters 1 Christian Moëll Poster C:03, page 21 Ilse Schuitema Poster E:06, page 29 Dalit Modan-Moses Poster M:02, page 45 Marieke De Bruin Poster M:06, page 47 Marianne Jarfelt 15:00 Coffee 15:30 Neurocognitive sequele after brain tumours Jacques Grill A:05 16:00 Neuropsychological consequences of Christine Eiser A:06 childhood cancer 16:30 Discussion Chairman: O.Björk 18:30 Welcome reception
Friday April 20, 2007 TIME SUBJECT SPEAKER ABSTRACT 09:00 Introduction of Morning Session Christian Moëll 09:10 Second neoplasms and late mortality Stanislaw Garwicz A:07 09:50 How is the Follow-up done now? Lars Hjorth 10:00 Presentation of selected posters 2 Lars Hjorth Poster F:01, page 34 J. Hazelhoff Poster F:05, page 36 Kate Absolom Poster F:07, page 37 Francesca Fioredda Poster F:08, page 37 Thorsten Langer 10:30 Coffee 11:00 The role of the nurse in the Follow-up clinic Faith Gibson A:08 11:30 Models of Follow-up after childhood cancer Andrew Toogood A:09 12:00 Discussion Chairman: L. Hjorth 12:20 Lunch 13:20 Introduction of Afternoon session Hamish Wallace 13:30 GH deficiency after Childhood cancer – Stephen Shalet A:10 whom to treat? 14:10 Presentation of selected posters 3 Hamish Wallace Poster G:04, page 39 Yvonne L. Giwercman Poster G:09, page 42 Jeanette Falck Winther Poster G:06, page 40 M.H. van den Berg Poster G:12, page 43 Kirsi Jahnukainen 14:40 Coffee 15:10 Who is at risk of gonadal dysfunction? Charles Sklar A:11 15:50 Fertility preservation in young people Victoria Keros A:12 treated for cancer 16:20 Discussion Chairman: H. Wallace 16:40 Presentation of Poster prize 16:50 Closing remarks Christian Moëll 19:00 Symposium dinner
Welcome to the European Symposium on Late Complications after Childhood Cancer. Please see us at our exhibition stand. Daniel Richards F1 Championship Nürburgring 2022 Treatment is much more than medicine – Novo Nordisk® is dedicated to support at all levels to achieve greater heights Growing support Growing commitment Novo Nordisk® is a major supporter of Our aspiration is to lead the way in endocrine research as well as meetings and improving the lives of children and adults congresses on endocrinology, and we offer with growth hormone disturbances through a whole range of healthcare professional our user-friendly pen systems, training training initiatives including: training courses programmes and continued support and (Henning Andersen Courses), fellowship education to patients and parents support (ESPE Research Fellowship Awards), conferences, symposia and literature Growing ambitions. Growing potential. Growing support. Novo Nordisk Scandinavia AB Vattenverksvägen 47 Box 50587 nordiscience 202 15 Malmö ® Sweden Tel: +46 40 38 89 00
Speakers Olle Björk Jacques Grill Kjeld Schmiegelow Children´s Cancer Foundation Gustave Roussy Institute Pediatric Clinic Barncancerfonden Villejuif, France University Hospital Rigshospitalet Stockholm, Sweden Copenhagen, Denmark Lars Hjorth Giulio D´Angio Dept of Paediatrics Stephen M. Shalet Department of Radiation Oncology Lund University Hospital Department of Endocrinology Hospital of the University Lund, Sweden Christie Hospital of Pennsylvania Manchester, United Kingdom Philadelphia, USA Victoria Keros Obstetrics and gynecology Charles A. Sklar Christine Eiser Karolinska University Hospital Department of Pediatrics The University of Sheffield Stockholm, Sweden Memorial Sloan-Kettering Sheffield, United Kingdom Cancer Center Leontien C.M. Kremer New York, USA Stanislaw Garwicz Pediatric Oncology Dept of Paediatrics Emma Children´s Hospital Andrew Toogood Lund University Hospital Amsterdam, Netherlands University Hospital Birmingham Lund, Sweden United Kingdom Christian Moëll Faith Gibson Dept of Paediatrics Hamish Wallace UCL Institute of Child Health Lund University Hospital Royal Hospital for Sick Children Great Ormond Street Hospital Lund, Sweden Edinburgh, United Kingdom for Children London, United Kingdom Guenther Schellong University of Münster Daniel Green Münster, Germany Roswell Park Cancer Institute Buffalo, New York, USA www.barncancerfonden.se
Useful information BANKS Banks are open between 10.00 and 15.00 on weekdays. CLIMATE The weather in Lund in April is usually nice but showers can occur. For weather forecast please visit www.smhi.com CERTIFICATE OF ATTENDANCE Will be available at the registration desk on individual request. CURRENCY The official currency is Swedish Krona (SEK). USD 1 = SEK 7.00 (April 2007) EUR 1 = SEK 9.35 (April 2007) DISCLAIMER The Organizing Committee and Congrex Sweden AB accept no liability for injuries/losses of whatever nature incurred by participants and/or accompanying persons, nor loss of, or damage to, their luggage and/or personal belongings. INTERNET Wireless LAN will be available to all participants at the Symposium Venue. You will receive your user identity and password upon registration MEALS Coffee and lunches are included in the registration fee and will be served daily. Your name badge is your ticket. The lunch will be served at Akademiska Föreningen (Students’ Union). LANGUAGE The official language of the Congress is English (no translation facilities will be provided). TAXI We recommend the following taxi companies: Taxi Skåne, Phone: +46 (0)406 330 330 Taxi Kurir, Phone: +46 (0)406 700 700 Taxi Lund, Phone: +46 (0)46 12 12 12 Social events WELCOME RECEPTION Thursday 19 April 18.30 at The University Building Drinks will be served Included in the registration fee SYMPOSIUM DINNER Friday 20 April 19.00 at Grand Hotel Price/person: SEK 400
List of participants Blaauwbroek, Ria University Medical Center Groningen D D´Angio, Giulio Paediatric Oncology (2007-04-12) Hanzeplein 1 Hospital of the University of Pennsylvania Department of Radiation Oncology 9700 VB Groningen, Netherlands HUP, Donner 2 A Bojsen, Veronica Philadelphia, PA 19104, United States Absolom, Kate Children’s Hospital Dahlberg, Karin University of Sheffield Dept of Paediatrics Barn och Ungdomssjukhuset Department of Psychology 221 85 Lund, Sweden Onkologi Western Bank Bokenkamp, Arend 221 85 Lund, Sweden Sheffield, S10 2TP, United Kingdom VU Medical Center Davies, Helena af Sandeberg, Margareta Pediatric Nephrology Sheffield Childrens Hospital Astrid Lindgrens Hospital De Boelelaan 1117 Western Bank Pediatric Oncology 1081 HV Amsterdam, Netherlands Sheffield S10 2TH, United Kingdom Karolinska University Hospital Bolton, Jeff 171 76 Stockholm, Sweden De Bruin, Marieke Pfizer Limited Netherlands Cancer Institute Aksnes, Liv Hege Walton Oaks Epidemiology Rikshospitalet-Radiumhospitalet Medical Centre Dorking Road, Tadworth Plesmanlaan 121 Cancer Clinic Surrey, KT20 7NS, United Kingdom 1066CX Amsterdam, Netherlands Montebello Borgström, Birgit 0310 Oslo, Norway Inst for Clinical Science, Karolinska Institutet Albanese, Assunta Pediatrics E Karolinska University Hospital, Huddinge Edberg-Posse, Ebba The Royal Marsden NHS Foundation Trust 141 86 Stockholm, Sweden Kuratorskliniken Paediatric Oncology Karolinska Universitetsjukhuset, B44, Huddinge Downs Road Braam, Katja 141 86 Stockholm, Sweden Sutton SM2 5PT, United Kingdom VU University Medical Center Pediatric oncology/ hematology Ehrstedt, Christoffer Alston, Aileen De Boelelaan 1117 Uppsala University Hospital Royal Marsden Hospital 1081 HV Amsterdam, Netherlands Child Neurology Paediatric Endocrinology Murklevägen 15 Downs Road Bresters, Dorine 756 46 Uppsala, Sweden Sutton SM2 5PT, United Kingdom Lumc Wa-Kjc/Ihoba Eiser, Christine Amoroso, Loredana P.O. Box 9600 The University of Sheffield Institut Gustave Roussy 2300 RC Leiden, Netherlands Sheffield S10 2TP, United Kingdom 39 Rue Camille Desmoulins 94805, France Brouwer, C.A.J. Ek, Torben University Medical Center Groningen Barnkliniken Andersson, Christina Paediatric Oncology Länssjukhuset Gävle-Dala Barncancerförening Hanzeplein 1 30185 Halmstad, Sweden Sweden 9700 RB Groningen, Netherlands Eldeeb, Bettina Andersson, Ylva Burack, Richard Royal Shrewsbury Hospital Barncancerfonden Great Ormond Street Hospital Paediatric Oncology Box 5408 Oncology/Late Effects Mytton Oak Road 114 84 Stockholm, Sweden 26 Tempest Mead Shresbury SY3 8XQ, United Kingdom Arvidson, Johan North Weald, United Kingdom Elfving, Maria Department of Womens and Childrens Health Bökkerink, Jos Paediatrics Akademiska Sjukhuset University Hospital St Radboud Nijmegen University Hospital 752 85 Uppsala, Sweden Pediatric Hematology and Oncology 221 85 Lund, Sweden PO Box 9101 Elson, Ruth B 6500 HB Nijmegen, Netherlands Bristol Royal Hospital for Children Bashore, Lisa Oncology Day Beds Cook Children’s Medical Center Upper Maudlin Street Hematology/Oncology, Survivorship C Bristol BS2 8BJ, United Kingdom 901 7th Avenue, Suite 220 Caflisch, Ueli Fort Worth, Texas, United States Paediatric Oncology Enriquez, Raquel Kinderspital Children Hospital Aarau Behrendtz, Mikael Pediatric Oncology CH-6000 Luzern 16, Switzerland University Hospital Tellstrasse Department of Pediatrics Carlsson, Annelie 5000 Aarau, Switzerland 581 85 Linköping, Sweden Dept. of Paediatrics Lund University Hospital Eshelman, Debra Berg, Rickard 221 85 Lund, Sweden Children’s Medical Center Dallas Novo Nordisk Scandinavia Carlsson, Göran 1935 Motor Street GHT Team, Box 50587 Astrid Lindgrens Barnsjukhus Dallas , TX 75235, United States 202 15 Malmö, Sweden Barnonkologen Ewers, Sven-Börje Bergsträsser, Eva Karolinska Universitetsjukhuset Solna Dep of Oncology University Children’s Hospital 171 76 Stockholm, Sweden University Hospital Oncology Clausen, Niels 221 85 Lund, Sweden Steinwiesstr. 75 8032 Zürich, Switzerland University Hospital of Aarhus at Skejby Pediatrics Björk, Olle Brendstrupgaardsvej DK-8200 Aarhus N, Denmark F Barncancerfonden Fahlén, Eva Box 5408 Cohn, Richard Barncancerföreningen i Västra Sverige, Sweden 114 84 Stockholm, Sweden Sydney Children’s Hopsital Fioredda, Francesca Centre for Children’s Cancer and Blood Disorders Giannina Gaslini Children Hospital Björk-Eriksson, Thomas High Street, Randwick Haematology-Oncology Sahlgrenska Universitetssjukhuset 2029 Sydney, Australia Largo Gerolamo Gaslini 5 Dep of Oncology Costa, Vitor 16134 Genova, Italy Blå Stråket 2 Baxter, Avenida da Liberdade, 103 413 45 Göteborg, Sweden Follin, Cecilia 1269-049, Portugal Endokrin, Kraftgatan 7b 10 231 34 Lomma, Sweden
Forinder, Ulla Stockholm University H Jakobsson, Jörgen Novo Nordisk Scandinavia Hakvoort-Cammel, Friederike G.A.J. Social work GHT Team, Box 50587 Erasmus MC-Sophia Children’s Hospital 106 91 Stockholm, Sweden 202 15 Malmö, Sweden Hematology/Oncology Fors, Hans Dr. Molewaterplein 60 Jarfelt, Marianne Barnklin NÄL 3015 GJ Rotterdam, Netherlands The Queen Silvia Children´s Hospital 461 85 Trollhättan, Sweden Pediatric Hematology and Oncology Hamre, Hanne M. Inst. of Clinical Sciences Forslund, Karin Rikshospitalet-Radiumhospitalet HF 416 85 Göteborg, Sweden Barncancerfonden Kreftklinikken, seksjon for langtidsstudier Box 5408 Montebello Jernberg, Birgitta 114 84 Stockholm, Sweden 0310 Oslo, Norway Akademiska Barnsjukhuset 95B 751 85 Uppsala, Sweden Frenos, Stefano Harila, Marika Anna Meyer Children Hospital-Univ. of Florence Oulu University Hospital Johannsdottir, Inga Maria Rinvoll Onco-Hematology Dept of Rehabilitation Rikshospitalet Via Luca Giordano 13 Po Box 23 Pediatric hemato-/oncology 50132, Italy 90029 Oys, Finland Bekkeliveien 14B Frey, Eva Harila-Saari, Arja 0375 Oslo, Norway St. Anna Children´s Hospital Oulu University Hospital Johansson, Magnus Oncology Pediatrics, PL23 Pfizer Limited, Sweden Kinderspitalgasse 6 90029 OYS, Oulu, Finland Jonmundsson, Gudmundur 1090 Vienna, Austria Haugan, Nils Henry Landspitali Children’s Hospital Frisk, Per Ullevål Universitetssykehus Oslo Hringbraut Uppsala University Children’s Hospital Barneavdeling og Poliklinikk IS-101 Reykjavik, Iceland Women’s and Children’s health Kirkev.166 751 85 Uppsala, Sweden 0407 Oslo , Norway K Frost, Britt-Marie Haupt, Riccardo Kazanowska, Bernarda Uppsala University Gaslini Children Hospital, Scientific Directorate Wroclaw Medical University Womens and childrens health Largo G. Gaslini, 5 Dept. of Pediatric Oncology Akademiska Sjukhuset 16147 Genova, Italy Bujwida 44 751 85 Uppsala, Sweden 50-345 Wroclaw, Poland Hazelhoff, Janneke Emma Children’s Hospital/Academic Medical Center Kepak, Tomas G Po Box 22660 University Hospital Brno Garwicz, Stanislaw 1100 DD Amsterdam, Netherlands Pediatric Oncology Lund University Hospital Hellman, Ann-Mari Cernopolni 9 221 85 Lund, Sweden Barncancerfonden 625 00 Brno, Czech Republic Gavras, Christoforos Box 5408 Keros, Victoria Ahepa University Hospital 114 84 Stockholm, Sweden Karolinska University Hospital Hematology-Oncology Unit Hengartner, Heinz Obster-gyn department Votsi 12 Ostschweizer Kinderspital K 57 60100 Katerini, Greece Hematology/Oncology 141 86 Stockholm, Sweden Gibson, Faith Claudiusstrasse 6 Kiserud, Cecilie UCL Institute of Child Health 9600 St. Gallen, Switzerland Rikshospitalet-Radiumhospitalet HF Great Ormond Street Hospital for Children Hess, Siri Lothe Enhet for langtidsstudier 7th Floor Old Building Great Ormond Street Rikshospitalet - Radiumhospitalet Medical Centre Fagområde klinisk kreftf WC1N3JH London, United Kingdom Montebello 0310 Montebello, Oslo, Norway Gisselbaek, Mogens 0310 Oslo, Norway Krawczuk-Rybak, Maryna Novo Nordisk Hjorth, Lars Medical University, Pediatric Oncology Baeverdalen 26 Children’s Hospital, Dept of Paediatrics Kilinskiego 1 3400 Hillerod, Denmark 221 85 Lund, Sweden 15-089 Bialystok, Poland Giwercman, Yvonne Holmer, Helene Kremer, Leontien C.M. Lund University Medicinkliniken A.M.C. Clinical Sciences Centralsjukhuset Postbox 22660 CRC, Building 91, Plan 10 291 94 Kristianstad, Sweden 1100 DD, Amsterdam, Netherlands 205 02 Malmö, Sweden Horne, Beverly Goldkuhl, Christina St. James’s University Hospital L Sahlgrenska University Hospital Paediatric Oncology & Haematology Lafay-Cousin, Lucie Dep.of Oncology Beckett Street Alberta Children’s Hospital, Pediatric Oncology Blå Stråket 2 LS9 7TF Leeds, United Kingdom 2888 Shaganappi Trail NW 413 45 Göteborg, Sweden T2T 1X4, Canada Hou, Mi Green, Daniel Karolinska Institute Langer, Thorsten Roswell Park Cancer Institute Dept. of Woman and Child Health University Hospital for Children and Adolescents Elm & Carlton Streets Pediatric Endocrinology Unit, Q2:08 Late Effects Surveillance System Buffalo, New York 14263, United States 171 76 Stockholm, Sweden Loschgestr. 15 Greenfield, Diana 91054 Erlangen, Germany Cancer Research Centre University of Sheffield I Leiper, Alison Ishida, Yasushi Haematology Weston Park Hospital, Whitham Road Great Ormond Street Hospital Ehime University Graduate School of Medicine Sheffield, S10 2SJ, United Kingdom London WC1N 3JH, United Kingdom Pediatrics Grill, Jacques Shitukawa, Touon-city Levitt, Gill Gustave Roussy Institute Ehime, 791-0295, Japan Oncology/Haemartology 39 Rue C. Desmoulins Great Ormond St 94805 Villejuif, France London WC1 N 3JH, United Kingdom J Gullersbo, Malin Jahnukainen, Kirsi Lidén, Karin Barnkliniken Astrid Lindgren Children´s Hospital Barn- och Ungdomskliniken Universitetssjukhuset Department of Woman and Child Health Centralsjukhuset 581 85 Linköping, Sweden Pediatric Endocrinology Unit, Q2:08 651 85 Karlstad, Sweden 171 76 Stockholm, Sweden 11
Lindgren, Maria Moelgaard Hansen, Lene Pettersson, Liselott Akademiska Barnsjukhuset Aarhus University Hospital, Skejby Sygehus Akademiska Barnsjukhuset Avd för blod och tumörsjukdomar Paediatrics Avd för Blod-och tumörsjukdomar Ing 95 Brendstrupgaardsvej 100 Ing 95 751 85 Uppsala, Sweden 8200 Aarhus N, Denmark 751 85 Uppsala, Sweden Link, Katarina Moëll, Christian Peyrl, Andreas The Universityhospital in Malmö Children’s Hospital Novo Nordisk Pharma GmbH The department of Endocrinology Dept of Paediatrics Opernring 3 205 02 Malmö, Sweden 221 85 Lund, Sweden 1010 Vienna, Austria Longhi, Alessandra Moser, Andrea Postma, Aleida Istituto Ortopedico Rizzoli University Children Hospital Graz University Medical Center Groningen Chemotherapy Div Pediatric Hematology/Oncology Pediatric Oncology Via Pupilli 1 Auenbruggerplatz 30 Post Box 30001 40136 Bologna, Italy 8036 Graz, Austria 9700 RB Groningen, Netherlands Lundsten, Ann Muszynska-Roslan, Katarzyna Barncancerföreningen i Västra Sverige Medical University R Sweden Pediatric Oncology Radvanska, Jitka Waszyngtona 17 Teaching Hospital Motol Lyons, Shoshanah 15-274 Poland Children Clinic Hematology and Oncology Royal Holloway, Univeristy of London Department of Clinical Psychology Möller, Torgil R. V Uvalu 84 Egham, Surrey TW20 OBX, United Kingdom Lund University Hospital 150 06, Czech Republic Regional Tumour Registry Radvansky, Jiri Lähteenmäki, Päivi Klinikgatan 22 Charles University 2nd Medical Faculty Turku University Hospital 221 85 Lund, Sweden Sports Medicine Dept of pediatrics Po Box 52 V Uvalu 84 150 00 Prague, Czech Republic FIN-20521 Turku, Finland N Löf, Catharina M Niedzielska, Ewa Rebholz, Cornelia Eva Karolinska Institutet, Department of Pediatrics Akademia Medyczna Swiss Childhood Cancer Registry 146 86 Stockholm, Sweden Klinika Hematologii i Onkologii Dzieciêcej Department of Social and Preventive Medicine Wroc³aw Finkenhubelweg 11 Bujwida 44 30-345, Poland 3012 Berne, Switzerland M Nilsson, Ann-Sofie Rechnitzer, Catherine Magnusson, Susanne Endokrin Rigshospitalet Dept of Oncology Läsvägen 9 Pediatrics Clinical Sciences 224 67 Lund, Sweden Dept of pediatric oncology 5054, Rigshospitalet 221 85 Lund, Sweden 2100 Copenhagen, Denmark Nussey, Stephen Malmberg, Lena St. Georges Hospital nhs trust Rollof, Lena Dpt. of Oncology Endocrinology University Hospital Onkologikliniken Centralsjukhuset Blackshaw Road Pediatric Department 651 85 Karlstad, Sweden London SW17 OQT, United Kingdom 221 85 Lund, Sweden Martinsson, Ulla Nyenget, Tove Ross, Emma Onkologikliniken Ullevål Universitetssykehus Oslo Leicester Royal Infirmary Akademiska sjukhuset Barneavdeling og Poliklinikk Paediatric Oncology 751 85 Uppsala, Sweden Kirkev.166 Infirmary Square Mattsson, Elisabet 0407 Oslo, Norway Leicester LE1 5WW, United Kingdom Public Health and Caring Sciences Nysom, Karsten Ruud, Ellen Psychosocial Oncology Rigshospitalet Rikshospitalet Uppsala Science Park Paediatric Haematology/Oncology Dep. of Pediatrics 751 85 Uppsala, Sweden Section 4064, Blegdamsvej 9 Sognsvannsveien 22 Mehta, Susan DK-2100 Copenhagen, Denmark 0027 Oslo, Norway Haematology/Oncology Ryalls, Michael Great Ormond Street London WC1N 3JH, United Kingdom O Royal Surrey County Hospital Opperud, Vigdis Paediatrics Michel, Gisela Rikshospitalet - Radiumhospitalet Medical Center Egerton Road University of Bern Montebello Guildford GU2 7XX, United Kingdom Dept of Social and Preventive Medicine 0310 Oslo, Norway Finkenhubelweg 22 3012 Bern, Switzerland S Mitchell, Anne P Schellong, Guenther Pal, Annacarin University of Münster Wellington Hospital Germany Astrid Lindgrens Barnsjukhus Paediatrics Karolinska Universitets sjukhuset Schmiegelow, Kjeld 48B Madras Street, Kandhallah 171 76 Stockholm, Sweden University Hospital Rigshospitalet Wellington, 6004, New Zealand Paulides, Marios Pediatric Clinic Mittal, Rakesh University Hospital for Children and Adolescents Blegdamsvej 9 Kuwait Cancer Control Centre Late Effects Surveillance System 2100 Copenhagen, Denmark Medical Oncology Loschgestr. 15 Schomerus, Eckhard Post Box - 1846 91054 Erlangen, Germany Klinikum Augsburg Hawally – 32019, Kuwait Pekkanen, Kirsti 1. Kinderklinik Modan-Moses, Dalit Drottning Silvias Barn och Ungdomssjukhus Stenglinstraße 2 The Edmond and Lily Safra Children’s hospital SU/Östra 86156 Augsburg, Germany Pediatric Endocrinology Barncancercentrum Avd 322 Schröder, Hildegard Tel-Hashomer, Ramat-Gan 416 85 Göteborg, Sweden University Hospital 52621, Israel Petersen, Cecilia Dept.: Pediatric Oncology and Hematology Karolinska Institutet Ratzeburger Allee 160 Pediatric Endocrinology Unit 23538 Germany Astrid Lindgren Children´s Hospital, Q2:08 171 76 Stockholm, Sweden 12
Schuitema, Ilse Thorvildsen, Anne Benedicte van Leeuwen, Flora Leiden University/VU University Medical Center Rikshospitalet-Radiumhospitalet HF Netherlands Cancer Institute Maria van Hongarijelaan 4 Center for Shared Decision Making and Nursing Rese Epidemiology 2353 EM Leiderdorp, Netherlands Forskningsveien 2b Plesmanlaan 121 NO-0027 Oslo, Norway 1066CX Amsterdam, Netherlands Sega-Pondel, Dorota Wroclaw Medical University Toogood, Andrew Vandecruys, Els Department of Pediatric Hematology/Oncology/BMT University Hospital Birmingham Ghent University Hospital ul. Bujwida 44 NHS Foundation Trust Edgbaston Pediatric Hemato-Oncology 50-345 Wroclaw, Poland Birmingham, B15 2TH, United Kingdom De Pintelaan 185 9000 Ghent, Belgium Sehested, Astrid Turup, Eva Rigshospitalet Akademiska Sjukhuset Wells, Robert 4064 Barnonkologen U. T. M. D. Anderson Cancer Center Blegdamsvej 9 751 85 Uppsala, Sweden Pediatrics 2100 Copenhagen Ø, Denmark 1515 Holcombe Blvd, Unit 87 Houston, TX 77030, United States Shalet, Stephen Michael U Christie Hospital Uhlig, Helena Wennström, Lovisa Department of Endocrinology Akademiska Sjukhuset Sahlgrenska Universitetssjukhuset Wilmslow Road Psykosociala Enheten Sektionen för hematologi M20 4BX Manchester, United Kingdom Akademiska Barnsjukhuset, ing 95 NBV 2413 45 Göteborg, Sweden Sklar, Charles A. 751 85 Uppsala, Sweden Widing, Eva Memorial Sloan-Kettering Cancer Center Urquhart, Tanya Ullevål University Hospital Department of Pediatrics Sheffield Childrens NHS Foundation Trust Dept og Paediatrics 23 East 20th Street, #6 Nursing Kierkeveien 166 10003 New York, United States C Floor, Stephenson Wing, Western Bank 0407 Oslo, Norway Slaby, Krystof Sheffield, South Yorkshire, S10 2TH Wiebe, Thomas Charles University in Prague 2nd Medical Faculty United Kingdom Children´s Hospital Dept of Paediatrics Department of Sports Medicine 221 85 Lund, Sweden V Uvalu 84 15006 Prague, Czech Republic VW Wiklund, Jan-Åke Wahlgren, Aida Novo Nordisk Scandinavia Smedler, Ann-Charlotte Pediatric Endocrinology Unit GHT Team Stockholm University Dep of Woman and Child Health Box 505 87 Dept of Psychology Q2:08 Astrid Lindgrens Children’s Hospital 202 15 Malmö, Sweden 106 91 Stockholm, Sweden 171 76 Stockholm, Sweden Winter, Anita Stille, Jenny Wallace, Hamish University Children Hospital Graz Queen Silvia Children’s Hospital Royal hospital for Sick Children Pediatric Hematology/ Oncology Centre of Pediatric Oncology Consultant Paediatric Oncologist Auenbruggerplatz 30 416 85 Göteborg, Sweden 17 Millerfield Place 8036 Graz, Austria Edinburgh EH9 1LF, United Kingdom Strömberg, Bo Winther, Jeanette Falck Uppsala University Children’s Hospital Wallenborg, Carina Danish Cancer Society Deparment of Women’s and Children’s Health Gävle-Dala Barncancerförening Institute of Cancer Epidemiology Uppsala Sweden Sweden Strandboulevarden 49 751 85 Uppsala, Sweden DK-2100 Copenhagen, Denmark van Baalen, Manita Sugden, Elaine Erasmus University Medical Centre Sophia Winther, Marianne Oxford Radcliffe Hospitals van Ostadeplein 19 Novo Nordisk Scandinavia Clinical Oncology 5151 SW Rotterdam, Netherlands ABRegion DanmarkArne Jacobsens Allé 15 Churchill Hospital DK-2300 Köbenhavn SDenmark van den Berg, Marleen Oxford OX20NA, United Kingdom VU University Medical Center Wooding, Katherine Sundberg, Kay Dept. of Paediatrics Morriston Hospital Uppsala Universitet, Inst.för folkhälso-och vårdve- Po Box 7057 Morriston Swansea tenskap 1007 MB Amsterdam, Netherlands SA6 6NL United Kingdom Uppsala science Park van den Bos, Cor Wynn, Belynda 751 83 Uppsala, Sweden Emma Children’s Hospital Christchurch Hospital Sunnvius, Ann Pediatric Oncology and Late Effects Study Group Paediatric Department Uppsala Barncancerförening Room F8-243, Po Box 22660 Private Bag 4710 Uppsala, Sweden 1100 DD Amsterdam, Netherlands Christchurch, New Zealand Sällfors Holmqvist, Anna van den Heuvel-Eibrink, Marry M. Barn- och Ungdomssjukhuset Erasmus MC-Sophia Childrens Hospital Z 221 85 Lund, Sweden Pediatric Oncology Zaletel-Zadravec, Lorna P.O. Box 2060 Institute of Oncology Ljubljana 3000 CB Rotterdam, Netherlands Zaloska 2 T 1000 Ljubljana, Slovenia Taj, Mary van der Linden, Gerard H.M. The Royal Marsden NHS Foundation Trust Erasmus University Medical Centre Sophia Paediatric Oncology Hematology/Oncology Downs Road Po Box 2060 Sutton SM2 5PT, United Kingdom 3000 CB Rotterdam, Netherlands Teixeira, Ana van der Pal, Heleen Instituto Português de Oncologia Academic Medical Center Paediatrics Medical Oncology Rua Castilho, 185, 8º Meibergdreef 9, room F4-224 1070-051 Lisboa, Portugal 1105 AZ Amsterdam, Netherlands Thomsen, Line van der Sluis, Inge M. Novo Nordisk Scandinavia Erasmus MC-Sophia Childrens Hospital ABRegion DanmarkArne Jacobsens Allé 15DK-2300 Pediatric Oncology Köbenhavn SDenmark P.O. Box 2060 3000 CB Rotterdam, Netherlands 13
Invited Speakers Late Effects Of Treatment Modifications of treatment to minimise late For Childhood Cancer A:01 complications after childhood cancer: The Hodgkin Lymphoma experience A:02 Green, Daniel M. Roswell Park Cancer Institute, Department of Pediatrics, Buffalo, Schellong, Guenther United States University Children’s Hospital, Haematology/Oncology, Muenster, Survival after the diagnosis of cancer in children and adolescents has become Germany the rule. Adult survivors of childhood cancer have concerns regarding tre- atment effects on their longevity, fertility and offspring. The standardized Hodgkin’s disease (HD) takes a special place amongst cancer diseases of mortality ratio (SMR) for male five-year survivors who participated in the childhood. Cure rates are very high, but long term survival goes along with Childhood Cancer Survivor Study (CCSS) was 8.5, and was 18.2 for female a large spectrum of therapy-induced late effects. This is especially proven for CCSS participants. The most frequent causes of premature mortality are the the therapy concepts applied until 25 to 30 years ago, when radiotherapy original cancer, cardiac disease and second malignant neoplasms (SMNs). was still extensively practiced and several chemotherapeutic agents were Data which are population based from the Nordic countries are similar. The given at high cumulative doses now known to produce long-term compli- SMR for males was 9.2 for males and 14.6 for females. cations. Since the 1970ies many paediatric therapy studies have tried to Anthracycline antibiotics and direct cardiac irradiation cause cardiac minimise the late consequences by treatment modifications. morbidity. The risk factors for anthracycline cardiomyopathy include the 1387 patients below 18 y with all disease stages were enrolled in the cumulative dose of anthracycline received and exposure of the left ventricle first 5 German-Austrian DAL-studies HD-78 to HD-90 between 1978 and to radiation. Radiation therapy can damage the cardiac valves, coronary arte- 1995 by 104 centres. Following therapy extended long-term surveillance ries, myocardium and pericardium. Female childhood cancer survivors who has been organised continuously into adulthood (Project HD-Late Effects). were treated with > 20 Gy have a relative risk (RR) of obesity (body mass in- During the initial years follow-up information was provided by the parti- dex > 30) of 2.59. The RR of obesity for males was 1.86. Obesity predispo- cipating departments. After the patients had reached adulthood the study ses individuals for diabetes mellitus, hypertension and dyslipidemia, factors centre established direct contact to them and/or their physicians. At the last that will interact with known treatment effects on cardiac health. Growth evaluation (January 07) information was available from 78% of the patients hormone deficiency may underlie several of these abnormalities. from the last 6 years. At last information the median follow-up was 13.4 The fertility of childhood cancer survivors is impaired. The adjusted re- (max. 28.2) y, and median age 26.1 (max. 44.0) y. Overall survival of the lative fertility of survivors, compared to that of their siblings was 0.85 (95% total group with all treatment modifications was 95% at 10 y and 92% at CI - 0.78 - 0.92). Fertility may be impaired by the absence of sperm and ova 20 y. or abnormal uterine structure. The offspring of female CCSS participants Chemotherapy: In the general framework of combined modality tre- who received pelvic irradiation were at increased risk (RR - 1.84) of weig- atment chemotherapy in the initial DAL-HD-studies consisted of a mo- hing < 2500 grams at birth. Most chemotherapeutic agents are mutagenic. dification of MOPP. Mechlorethamine was replaced by doxorubicin and Recent studies have not identified an increased frequency of major conge- cyclophosphamide resulting in OPPA and COPP, respectively. The number nital malformations, genetic disease or childhood cancer in the offspring of of cycles was reduced according to the risk of disease: 2 OPPA for early childhood cancer survivors. stages, 2 OPPA + 2 COPP for intermediate and 2 OPPA + 4 COPP for The standardized incidence ratio (SIR) for a SMN among CCSS parti- advanced stages. Radiotherapy followed chemotherapy. Treatment results cipants who had a median follow-up of 15.4 years after diagnosis was 6.38. were favourable. The SIR reported for Nordic pediatric cancer patients who had a mean fol- Late effects: The cumulative incidence of secondary leukaemias/MDS low-up of 6.1 years after diagnosis was 3.6. Risk factors for SMNs include was 0.5%. Only 1 cardiomyopathy developed in 171 patients without me- genetic predisposition, gender and treatment factors. Thyroid carcinoma, diastinal irradiation and without additional chemotherapy due to relapse or breast cancer, brain tumors and skin cancer are among the more frequently second malignancy, (cumulative total doxorubicin dose in all patients 160 diagnosed radiation related SMNs. Tobacco use increases the risk of subse- mg/m2). By contrast, a considerably higher incidences of testicular dysfun- quent lung cancer in patients who received lung irradiation. CCSS parti- ction were detected primarily by hormonal parameters. Elevated FSH levels cipants reported smoking rates that were significantly lower than those of were noted in 40% of the examined post-pubertal male patients indicating the general population. However 19% of males and 17% of females were impairment of spermatogenesis. The prevalence of abnormal findings was current smokers, increasing their risks for lung disease, heart disease and related to the cumulative doses of procarbazine. In the subsequent studies SMNs. SMNs may develop after exposure to alkylating agents and topoiso- it was tried to eliminate procarbazine, the main gonadotoxic drug for boys, merase II inhibitors. from the protocols. In a successful step etoposide was substituted for procar- Medical care for childhood cancer survivors must be based on accurate bazine in OPPA arriving at OEPA for boys in HD-90 and -95. This combi- knowledge of the treatment exposures of the survivor and informed assess- nation had no gonadotoxic effect and did not increase the risk of secondary ment of the survivor by medical professionals. Only 72% of CCSS parti- leukaemias (cumulative incidence at 15 years 0.5%). Next, dacarbazine was cipants accurately reported their diagnosis. Recall by CCSS participants of substituted for procarbazine in COPP (COPDac). While the efficacy of treatment with specific chemotherapeutic agents or exact radiation therapy the OEPA /COPDac regimen to control HD has already been proven in treatment volumes is poor. Exposure specific care will be difficult unless the Pilot HD-2002, testicular function has to be tested in late adolescence or patient is given a physical and/or electronic record of his/her diagnosis and early adulthood. Radiotherapy: While the radiation doses were 36-40 Gy treatment. in the first study HD-78 they were stepwise reduced to 20 Gy in the sub- Future research will be necessary to determine the most effective follow- sequent studies. Extended field was changed to involved field and later to up program for survivors. Several models, including prolonged follow-up reduced involved field irradiation. Treatment results were not affected by at a cancer center, transition of care to appropriately trained physicians in a these reductions. In GPOH-HD-95 radiotherapy was omitted in patients specialty setting, or transition to community physicians supported by com- with complete remission after chemotherapy. This strategy was successful in puter based practice guidelines, have been suggested. Many current follow- terms of DFS in early, but not in intermediate and advanced stages. up evaluations are based primarily on expert opinion. Research is necessary Late effects: At the present time it cannot be determined whether the to document that expert opinion results in care that is cost effective and reduction of radiotherapy has indeed diminished the cumulative incidence reduces morbidity and/or mortality. Such studies require large sample sizes of secondary solid tumours as intended. A longer follow-up of the patients and prolonged follow-up. from the low dose studies is needed. Preliminary data from studies with intermediate doses show some important trends. 14
Anthracycline cardiotoxicity in children. Is Childhood Cancer A Chronic Disease? What is the risk and can we avoid it? A:03 A:04 Kremer, Leontien D’Angio, Giulio Emma Childrens’ Hospital, Pediatric Oncology, Amsterdam, Department of Radiation Oncology, Philadelphia, United States Netherlands Definitions*: Anthracycline-induced cardiotoxicity is a widely prevalent problem. The 1) Chronic: marked by long duration; relapsing, unremitting consequences of anthracycline-induced cardiotoxicity are extensive. First, 2) Disease: disquiet (obsolete); disordered normal health status it can cause a reduction in the amount of anthracyclines that a patient *Oxford Universal Dictionary was supposed to receive and as a result, the chance of survival of that Background: --- The Erice Conference in November 2006 was conve- patient can be reduced. Also, it can lead to cardiac death. The risk of ned to address the question, ”Is there such a thing as total cure of childhood developing heart failure remains a lifelong threat, especially to children cancer?” It is another way of asking whether it is a chronic disease. The con- who have a long life-expectancy after successful antineoplastic treatment. sensus answer was, ”No”, based on both definitions. There was another issue Several risk factors for anthracycline-induced cardiotoxicity, like a hig- that was very important to the long-term survivors, their representatives and her cumulative anthracycline dose, different anthracycline derivates, a hig- the clinicians present in Erice. It was the question, ”When can the patient be her anthracycline peak dose, radiation therapy involving the heart region, told he/she has been cured?” It elicited several different answers. female sex, younger age at diagnosis, black race, additional treatment with Discussion: --- The myriad primary and secondary effects entailed in for example cyclophosphamide or mitoxantrone and presence of trisomy cancer therapy include continuing dis-ease and disease in the patient. Dis- 21 have been identified. quiet is felt not only by members of the family, but by a wider circle that Serial monitoring of the cardiac function of children receiving an- includes health care workers as well. The effects on these latter--- nurses, thracycline therapy allows early identification of cardiac damage. During doctors, social workers, clinical laboratory staff, pharmacists, students, et therapy, the anthracycline dosage can then be adjusted or anthracycline al. --- deserve more attention and study. But is the primary cancer itself not therapy can be even stopped, which, hopefully, can prevent more cardiac a chronic illness? Does it never recur after a long interval? That is known damage to occur. Unfortunately, at the moment, there is no evidence on to be true for certain rare entities like the mesenchymal chondrosarcoma. the most optimal way to monitor cardiac function in children treated with Recent studies indicate that late recurrence of the primary are being seen anthracyclines. in the more common cancers, too. So when can the patient be told he/she If cardiotoxicity could be prevented or at least be reduced, higher doses is cured; i.e., the original cancer will never come back? Perspective --- Cu- of anthracyclines could potentially be used, thereby possibly further in- ring a child of cancer does not render that boy or girl immortal. He/she creasing cancer survival. Extensive research has been devoted to the iden- is subject to all the ills and misadventures of the general population. This tification of methods or agents capable of ameliorating anthracycline-in- led Easson about 60 years ago to propose his ”Concept of Cure”. His idea duced cardiotoxicity. The following methods for primary prevention have was this: the patient can be told that death from the original cancer poses been identified: 1) Avoiding the use of anthracyclines in the treatment no excess risk when the likelihood of dying of the primary neoplasm is not of childhood cancer, 2) The use of possible less cardiotoxic anthracycline greater than the risk of death from any cause in age peers in the general analogues and anthracenediones, 3) Reducing the cumulative dose of an- population. It should be noted that, for those who survive a decade or thracyclines, 4) Reducing the anthracycline peak dose, 5) Use of cardio- more, second malignant neoplasms (SMNs) appear in increasing propor- protective agents. tions among the listed causes of death; indeed, in a recent report, recur- Important insight in the current state of the evidence on anthracycline rence of the primary tumor was in second place. Some SMNs, at least, cardiotoxicity is provided. could be prevented by strongly discouraging cigarette smoking. Many of these patients are particularly vulnerable to the other damage caused by smoking depending on the curative treatments used. Impaired lung fun- ction if irradiated, is an example. The tobacco companies are targeting the ’teen and young adult population with candy-flavored cigarettes and enticing labeling; e.g., a coconut flavored product called, ”Kauai Kolada”. Surveillance and counseling are needed. Returning to the primary cancer, the Easson construct avoids unwonted over-optimism or pessimism on the part of individual physicians. It provides a more solid foundation on which to express an opinion when a long-term survivor asks, ”Will my tumor come back to kill me?” Conclusion: --- The question, ”Is childhood cancer a chronic disease?” elicits a Talmudic answer, ”Well, it depends ....” 15
Neurocognitive sequelae of Neuropsychological consequences brain tumors in children A:05 of childhood cancer A:06 Grill, Jacques Eiser, Christine Gustave Roussy Institute, Pediatric and adolescent oncology, University of Sheffield, Psychology, Sheffield, United Kingdom Villejuif, France Concern about the neuropsychological consequences of cancer and its tre- As prognosis of brain tumors is improving, concerns are growing for the atment initially focused on treatment of acute lymphoblastic leukaemia quality of survival. As for other neoplasms, strategies to mitigate sequelae (ALL) in children. Although the earliest reports suggested there were no have been developped to minimize the use of irradiation. These strategies identifiable effects, burgeoning work in the 1970s and 1980s pointed to rely on the assumption that irradiation is the principal cause of treatment intellectual deficits for many children. Younger age on diagnosis was iden- related side effects. However, surgery and chemotherapy may bring ad- tified as a risk factor, as was female gender. There was also much discussion ditional and substancial morbidity. In the modern age, it is of paramount about whether the deficit was a general one, or specific to certain skills. importance that all the caregivers are aware of the specific sequelae as- Attention and concentration were viewed as especially vulnerable. sociated with each treatment modality alone and in combination, before Cranial irradiation was initially seen to be the most likely cause of definite therapeutic decisions are made. It is now possible for some tumors any deficits, though subsequent work focused on comparisons between like medulloblastoma to draw algorithms to predict long-term cognitive standard and reduced dose radiation, and later chemotherapy alone. In outcome based on the principal parameters that can influence IQ : age practice, it is clear that many factors determine neuropsychological outco- at diagnosis, interval since diagnosis and irradiation volume and dose, mes, including treatment protocols, as well as socioeconomic and family anatomical and neurologic damage. This later risk factor being the most variables. important one in our later studies. Many issues remain. Critical is the question of the underlying cause of Studying the long-term results of patients treated with old-fashioned the condition. Two main hypotheses have been proposed. The first is that strategies can learn us a lot when choosing a given new strategy. Indeed, treatment disrupts elementary psychological processes such as attention one can guess the late sequelae of a given modality based on the type of or learning, and this compromises further development and acquisition refinement of the treatment. In addition, any new modality has to be of subsequent skills. The second involves a physiological process that is fully evaluated on the long-term (or with appropriate surrogates such as on-going and results in continued neuronal damage. early MRI changes), before it can be adopted as a standard. Certainly in While the focus of research has been on identifying whether or not the future, all new protocols will need to incorporate careful evaluation deficits occur, the more pressing question of remediation has received less of late sequelae attention. Drawing to a large extent on the brain injury rehabilitation In addition to treatment related risk factors, age at diagnosis is a major literature, several techniques have now been described, including pharma- predictor for impaired cogniotive outcome. Damage to specific structures cotherapy, cognitive remediation and ecological interventions. The latter may have a strong impact on further development of brain functions and emphasises the important role of schools and families in acknowledging this impact may depend on the age at which the structure is damaged. the child’s problems and engaging them in the child’s education. There will be critical period for each brain region, eg around two years School achievement and acquistion of skills is vital for successful adult for the cerebellum. We may need to take into account these issues for functioning, and especially so given the excellent survival rates now being treatment planning in the future. achieved. Waiting until the child is a long-term survivor before conside- Finally, rehabilitation by dedicated teams is still the best garanty to ring these issues is not acceptable, and regular assessment, and associated lower the burden of disease and treatment-related late complications. remediation if needed, is vital. 16
Second malignant neoplasms and What is the role of the nurse in the late mortality as complications after late effects practice/clinic? A:08 cancer in childhood and adolescence A:07 Gibson, Faith Garwicz, Stanislaw UCL Institute of Child Health and Great Ormond Street Hospital for Division of Pediatric Oncology, Department of Pediatrics, Lund, Children, Centre for Nursing and Allied Health Research, London, Sweden United Kingdom Second malignant neoplasms The observations that children treated for Though cure from cancer is not guaranteed, children’s chances of survival cancer are at increased risk of developing second malignant neoplasms have increased significantly. As a result the paediatric oncology commu- (SMN) are not new. Starting with single case reports more than four deca- nity is focused on providing appropriate follow-up care to an increasing des ago, the literature now encompasses more than hundred publications number of cancer survivors. However, while there is theoretical agreement of various size and quality. Combining elements of pediatric oncology, about how future follow-up care should be designed and delivered the adult oncology, cancer epidemiology, radiobiology, legislation and sta- current service remains somewhat inconsistent and fragmented. There tistics, every investigation of SMN must address several methodological remains some uncertainty around ’whom’, ’how’, ’when’ and ’why’ in re- issues, which are sometimes not readily recognizable. At the same time, lation to follow-up care: with some tensions existing between health care when interpreting the results, readers should be aware of different ap- professionals and young person’s views. This presentation mainly addres- proaches in different studies. ses the ’who’ factor in this debate, focusing exclusively on the role of the In the hospital-based studies, the standardized incidence ratio (SIR) of nurse, but within this context the ’why’ will also receive some attention: SMN is between 5 and 20 and the cumulative risk at 20 years of follow-up drawing on both professional and service users perspectives. is between 3% and 12%. In the population-based studies the correspon- Nurses can play a key role in follow-up care by: decreasing the full im- ding figures are: SIR 3.6 - 6.4 and cumulative risk 2.6% - 3.6%, compared pact of long-lasting effects of treatment; assisting the child/young person with 0.6% expected. Absolute excess risk (AER) is between 1 and 3.5 cases and family to cope effectively while monitoring and treating late effects; of SMN per 1,000 person-years. The risk is higher in the patients treated helping them and their family gain perspective on the cancer experience more recently. so that they can be vigilant toward potential late effects. There is evidence As SMN, bone and connective tissue tumors, breast cancer, CNS already in existence that supports maximising the role of the nurse in fol- tumors and thyroid cancer have highest SIR. The interval between first low-up care. For example, nurse-led follow-up clinics have been in place and second cancer is in average more than 10 years, being shortest for in the USA since 1983, and in the UK there is evidence that nurses have leukemia and longest for breast cancer and tumors of the digestive tract begun to take a role in long-term follow-up. However, some roles are not as SMN. Among specific combinations of the first and second cancers, consistent in either approach or intentions and outcomes are rarely de- especially worrying is the high cumulative risk of breast cancer among scribed, leaving posts fragile when service re-organisations take place. This women surviving Hodgkin lymphoma. Results of the investigations on presentation draws on data collected from nurses working in late effects the etiological factors in the development of SMN are partly conflicting. in the UK and elsewhere with the specific aim of capturing a moment in Genetic factors, radiation therapy, chemotherapy and possibly also relapse time to describe the characteristics of this evolving role. There is a need of the primary tumor per se, are all incriminated in increasing the risk of to move beyond traditional frameworks of treatment and care that are SMN, but their quantitative contribution is difficult to establish and it situated in historical professional boundaries in order that we embrace varies greatly depending on the nature of first and second cancer. enhanced cancer care for survivors. Late mortality Cumulative mortality among 5-year survivors diagnosed in sixties through eighties is 8 - 10% at 15 years after diagnosis and 12 - 14% at 25 years. Standardized mortality ratio (SMR) is about tenfold higher than in the general population. SMR is highest at 5 - 10 years after diagnosis and decreases with longer follow-up. Absolute excess risk (AER) is about 7 deaths per 1,000 person-years at risk. Cumulative mortality is higher in males than females, while SMR is higher in females, depending on lower background mortality in women. The highest percentage of dea- ths is observed among patients with Hodgkin lymphoma, CNS tumors and leukemia. Relapse status in the first 5 years after diagnosis, age at diagnosis, treatment era and treatment modality appear to be important prognostic indicators. The pattern of causes of death depends on primary diagnosis and varies with the lengths of follow-up. While recurrence of the primary tumor dominates greatly at shorter follow-up, second malignant neoplasms, cardiac toxicity and pulmonary complications emerge as im- portant causes of death with longer follow-up. Since mortality continues to be excessive many years after diagnosis, further long-term follow-up of survivors of cancer in childhood and adolescence is mandatory. 17
Models of Follow Up After Childhood Cancer GH deficiency after childhood cancer – A:09 whom to treat? A:10 Toogood, Andy Shalet, Stephen, Michael University Hospital Birmingham NHS Foundation Trust, Birming- Christie Hospital NHS Trust, Endocrinology, Manchester, United ham, United Kingdom Kingdom The evolution of multidisciplinary management of malignant disease that In 1981, the first results of the experience with GH treatment were re- occurs during childhood has led to improved survival into adult life. Ho- ported in 6 children who had survived a brain tumour(CBT). All re- wever, this success has come at a cost. In excess of 60% of survivors of sponded to GH therapy, and growth rates increased to 6.0-10.1 cm childhood cancer have one or more on-going medical problem and are at during the first year. Final height outcomes in CBT survivors treated risk of additional problems such as endocrine dysfunction or second ma- with GH were subsequently reported by various centres, with a signifi- lignancy. Consequently this cohort of patients require life-long follow-up cant proportion of children reaching final heights above the third centile. in a service that provides appropriate management of the conditions the A study of the effects of spinal irradiation on final height in 79 CBT pa- patient already suffers and surveillance for those they may develop in the tients (not treated with GH) estimated the radiation-related spinal height future. To a certain extent long-term follow-up services have evolved out loss to be at least 9 versus 7 versus 5.5cm when irradiation was given at of necessity and their nature has been dependent upon local geographical the age of 1 versus 5 versus 10 years, highlighting the vulnerability of very arrangement of services and personnel who are willing to be involved. young children to suffer the most severe spinal growth retardation. The ideal service should facilitate seamless care of patients from treat- Another factor, often encountered in CBT survivors, contributes to the ment in childhood to independent living young adults. Transition bet- relatively poor spinal growth response: early (although less frequent true ween paediatric and adult services is important. Many patients are lost precocious) puberty, which tends to be of normal duration. The predicted to follow up during this period so a robust process needs to be in place age of onset of puberty is positively correlated with the age at cranial irradia- to ensure that the necessary information and the patient are moved bet- tion. Both the radiation osteitis of the spine and abnormal pubertal tempo ween the two services. Each part of the service must provide education, in the context of early onset contribute to the poor response of sitting height psychological support and access to specialist facilities appropriate to the to GH treatment. Analysis of auxological data of the last 25 years of GH patient’s age. treatment in CBT survivors in our unit revealed a gradual improvement in Further evaluation of current models is required to determine the opti- final height outcome for both cranial irradiation (r=0.5, p=0.03) and crani- mal follow up strategies of this complex cohort of patients. ospinal irradiation patients (r=0.6, p
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