Christina Signorelli1,2, Claire E Wakefield1,2, Jordana K McLoone1,2, Joanna E Fardell1,2, Renae A Lawrence1,2, Michael Osborn3,4, Jo Truscott5, Heather Tapp6, Richard J Cohn1,2. 1. Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia. 2. School of Women's and Children's Health, Discipline of Paediatrics, UNSW Medicine, University of New South Wales, NSW, Australia. 3. Youth Cancer Service South Australia/Northern Territory, Royal Adelaide Hospital, Adelaide, South Australia, Australia. 4. Michael Rice Centre for Haematology and Oncology, Women's and Children's Hospital, North Adelaide, South Australia, Australia. 5. Children's Haematology Oncology Centre, Christchurch Hospital, Christchurch, New Zealand. 6. Department of Clinical Haematology/Oncology, Women's and Children's Hospital, North Adelaide, South Australia.
Abstract
AIM: Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face. METHODS: We conducted semistructured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral pediatric oncology units across ANZ (n = 19; 100% response rate). Data were analyzed using NVivo10. RESULTS: Participants unanimously identified limited options for transitioning older survivors out of pediatrics and inadequate funding as central challenges to the provision of best-practice LTFU care. There is duplication of resource development between clinics (e.g. survivorship care plan templates and clinic systems). Although participants recognized an overly prescriptive model of LTFU care as potentially unfeasible, the majority endorsed a national, or even bi-national, model of care that could be tailored to meet the needs of their local environment. CONCLUSION: The lack of an accepted model of optimal childhood cancer survivorship care across ANZ prevents the synergistic development of survivorship guidelines, survivorship care plans, transition pathways, information technology solutions, funding streams and late effects data consortiums. Sufficient resources to facilitate growth may be difficult to secure if approached by individual centers rather than via a national, cooperative effort. Improved solutions are urgently needed for transitioning survivors to appropriate care beyond the pediatric age.
AIM: Childhood cancer survivors remain at risk of developing life-altering and/or life-threatening health conditions following the completion of curative treatment. However, no uniform model of care for childhood cancer survivors exists in Australia and New Zealand (ANZ). This study reports on current childhood cancer survivorship care in ANZ, highlighting the challenges childhood cancer survivor long-term follow-up (LTFU) clinics face. METHODS: We conducted semistructured, telephone interviews with the pediatric medical director and clinical nurse consultant from all 11 LTFU clinics at tertiary referral pediatric oncology units across ANZ (n = 19; 100% response rate). Data were analyzed using NVivo10. RESULTS:Participants unanimously identified limited options for transitioning older survivors out of pediatrics and inadequate funding as central challenges to the provision of best-practice LTFU care. There is duplication of resource development between clinics (e.g. survivorship care plan templates and clinic systems). Although participants recognized an overly prescriptive model of LTFU care as potentially unfeasible, the majority endorsed a national, or even bi-national, model of care that could be tailored to meet the needs of their local environment. CONCLUSION: The lack of an accepted model of optimal childhood cancer survivorship care across ANZ prevents the synergistic development of survivorship guidelines, survivorship care plans, transition pathways, information technology solutions, funding streams and late effects data consortiums. Sufficient resources to facilitate growth may be difficult to secure if approached by individual centers rather than via a national, cooperative effort. Improved solutions are urgently needed for transitioning survivors to appropriate care beyond the pediatric age.
Authors: Christina Signorelli; Claire E Wakefield; Joanna E Fardell; Tali Foreman; Karen A Johnston; Jon Emery; Elysia Thornton-Benko; Afaf Girgis; Hanne C Lie; Richard J Cohn Journal: Oncologist Date: 2018-08-31
Authors: Maria Otth; Sibylle Denzler; Christa Koenig; Henrik Koehler; Katrin Scheinemann Journal: J Cancer Surviv Date: 2020-07-16 Impact factor: 4.442
Authors: Emily S Tonorezos; Dana Barnea; Richard J Cohn; Monica S Cypriano; Brice C Fresneau; Riccardo Haupt; Lars Hjorth; Yasushi Ishida; Jarmila Kruseova; Claudia E Kuehni; Purna A Kurkure; Thorsten Langer; Paul C Nathan; Jane E Skeen; Roderick Skinner; Nurdan Tacyildiz; Marry M van den Heuvel-Eibrink; Jeanette F Winther; Melissa M Hudson; Kevin C Oeffinger Journal: J Clin Oncol Date: 2018-06-06 Impact factor: 44.544
Authors: Beeshman S Nandakumar; Joanna E Fardell; Claire E Wakefield; Christina Signorelli; Jordana K McLoone; Jane Skeen; Ann M Maguire; Richard J Cohn Journal: Support Care Cancer Date: 2018-03-02 Impact factor: 3.603
Authors: Christina Signorelli; Claire E Wakefield; Karen A Johnston; Joanna E Fardell; Mary-Ellen E Brierley; Elysia Thornton-Benko; Tali Foreman; Kate Webber; W Hamish Wallace; Richard J Cohn Journal: BMJ Open Date: 2018-04-12 Impact factor: 2.692
Authors: Karim Thomas Sadak; Milki T Gemeda; Michelle Grafelman; Joseph P Neglia; David R Freyer; Eileen Harwood; Jude Mikal Journal: BMC Cancer Date: 2020-09-21 Impact factor: 4.430