Survivorship Care From Childhood into Adulthood

Transcription

1 Survivorship Care From Childhood into Adulthood Mark Greenberg, OC, MBChB, FRCPC Eleanor Hendershot, RN, BScN, MN, NP-peds Paul Nathan, MD, MSc, FRCPC Speaker Bios Mark Greenberg, OC, MB, ChB, FRCPC Senior Adviser, Policy & Clinical Affairs Pediatric Oncology Group of Ontario (POGO) Dr. Mark Greenberg is Senior Adviser, Policy & Clinical Affairs, and past Medical Director of Pediatric Oncology Group of Ontario (POGO) and POGO Chair in Childhood Cancer Control at the University of Toronto. He is also Professor of Paediatrics and Surgery at the University of Toronto and Senior Staff Oncologist and past Director, AfterCare Program, in the Division of Haematology/Oncology at The Hospital for Sick Children. From , he was Chief of Oncology at The Hospital for Sick Children. From , he cochaired the national Canadian Childhood Cancer Surveillance and Control Program. He is a previous North American President of the International Society of Pediatric Oncology. He is the author or coauthor of over 180 papers and many book chapters. Current research interests include long-term overall and specific outcomes and quality of care for children treated for childhood cancer, and interventions to mitigate those outcomes. In the mid 1908s, he was integral in the founding of POGO, a multidisciplinary collaboration of the pediatric academic centres delivering childhood cancer care in Ontario, established to provide a forum for participants in the care of childhood cancer. POGO is now the principal advisor to the Ontario Ministry of Health on matters relating to childhood cancer. As a result of POGO s planning and 2014 PRE-SIOP WORKSHOP: SURVIVAL IS NOT ENOUGH

2 advocacy, an integrated system of care for childhood cancer has been instituted, part of which is a network of aftercare clinics for survivors. This network follows consensus guidelines, and shares a common database that links adult survivors to their pediatric history, and incorporates physical, emotional and neurocognitive outcomes into the care pathways. Dr. Greenberg was awarded the Order of Canada in 2001, in recognition of his outstanding achievements in the area of childhood cancer. In 2007, he was awarded the prestigious O. Harold Warwick prize, a National Cancer Institute of Canada Award of Excellence in recognition of his outstanding contributions to improving the survival and quality of life of children with cancer. In recognition of his contributions to Canada, the Queen Elizabeth II Diamond Jubilee Medal was presented to him in Eleanor Hendershot, RN, BScN, MN, NP-peds Nurse Practitioner- Paediatrics Paediatric Cancer Aftercare Program, Princess Margaret Cancer Centre; SickKids, Toronto, ON Eleanor Hendershot completed her Master of Nursing in the Acute Care Nurse Practitioner Programs at the University of Toronto in She is currently working as the Aftercare Nurse Practitioner at both the Hospital for Sick Children and Princess Margaret Cancer Centre. Eleanor is cross-appointed to the Lawrence S. Bloomberg Faculty of Nursing, University of Toronto as an Adjunct lecturer. Eleanor has worked as an NP in Oncology at Sickkids for the past 11 years. She has published several book chapters on children and adolescents with solid tumors. She has also published multiple manuscripts on pediatric solid tumors and supportive care issues. Eleanor has been the principle investigator on retrospective studies looking at issues in osteosarcoma outcomes and postoperative fevers in solid tumor patients. She is now the co-principle Investigator of the prospective study involving the outpatient delivery of High-Dose Methotrexate in patients with Osteosarcoma and a co-investigator in a qualitative study evaluating Survivor Care Plans in Cancer Survivors. Paul Nathan, MD, MSc, FRCPC Director, AfterCare Program; Pediatric Oncologist, Division of Haematology/Oncology, SickKids Associate Professor of Paediatrics and Health Policy, Management & Evaluation, University of Toronto, Toronto, ON Dr. Nathan s research program is focused on outcomes in survivors of childhood cancer, including second cancers and cardiac disease, as well as health services utilization by adult survivors of childhood cancer. His research is funded by CIHR, POGO, Canadian Cancer Society Research Institute, and the C17 Research Network. He is a member of the steering committees of the Children s Oncology Group (COG) Survivorship and Outcomes Committee, the Childhood Cancer Survivor Study (CCSS), and the St. Jude Consortium for Pediatric Interventional Research PRE-SIOP WORKSHOP: SURVIVAL IS NOT ENOUGH

3 SURVIVORSHIP CARE FROM CHILDHOOD INTO ADULTHOOD POGO Pre-SIOP Workshop SURVIVAL IS NOT ENOUGH Optimizing the Journey of Childhood Cancer Patients & Survivors October 21, 2014 Mark L. Greenberg, OC, MB, ChB, FRCPC Senior Adviser, Policy & Clinical Affairs, Pediatric Oncology Group of Ontario (POGO) Professor of Paediatrics & Surgery, University of Toronto

4 The Challenge of Success

5 CCSS Self Reported Chronic Conditions Cumulative incidence of chronic health conditions (grade 1 to 5 and grade 3 to 5) Diller L et al. JCO 2009;27: by American Society of Clinical Oncology

6 Ontario s Aftercare Network 40-45% of Canadian pediatric cancer cases >475 cases/year ~14,000 survivors POGO identified need for formal Aftercare program for survivors of malignant disease in childhood Aftercare model developed in collaboration with multiple stakeholders Ministry of Health approval and funding POGO launches mandate for formal Aftercare programs 2002 First pediatric and adult Aftercare clinics 2004 All pediatric and three adult Aftercare clinics operational, database in all centres

7 CHEO & TOHRCC Ottawa KRCC at KGH Kingston SickKids & PMH Toronto CH,LHSC London MCH, HHS Hamilton

8 POGO AfterCare Program Objectives Identification of at-risk population Prevention Early detection - targeted screening Mitigation of detected late effects Biomedical Psychosocial

9 POGO AfterCare Program Organizational Principles Based on philosophy of equity, equivalence and access: 1. Human and fiscal resources a) Staffing requirements 2. Standardized guidelines a) Operational/process a. Guidelines for new referrals b. Transition guidelines i. From active follow up to AfterCare ii. Maturational/developmental transition iii. Transfer of care, i.e. pediatrics to adult b) Patient based care according to guidelines (largely COG)

10 POGO AfterCare Program Organizational Principles 3. Interdisciplinary professional development opportunities a) Multi-centre, multi-disciplinary planning/program design b) Ongoing interdisciplinary CE 4. Evaluation

11 Discipline Specific Staffing Requirements Staffing needs calculated by each discipline Physicians Nurses Behavioural Professionals - Social Workers - Neuropsychologists - Clinical Health Psychologists - Psychometrists Data Managers

12 Models of Care

13 POGONIS Data Content Overview General Profiles Demographics Patient/Family Sociographics Patient/Family Disease Characteristics - Diagnosis and Stage, Status Medical Treatments Type, Date and Details Locus of Treatment POGO Centers Satellite Programs Status Markers Allied Health Treatments POGO Centers Satellite Programs Death Record Late Effects Health Service Utilization Data

14 The Challenge - Expanding Volumes Who provides the care - Internal medicine - Family physicians - Nurse practitioner/apn Assignment by risk Is compliance with guidelines better in structured survivor clinics than in community Reaching out to structured multidisciplinary family practice units What about older survivors lost to follow up

15 TRANSITIONING TO ADULT CARE October 21, 2014 Eleanor Hendershot RN (EC), MN, BScN Nurse Practitioner - SickKids & Princess Margaret Aftercare Programs Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

16 Aims 1. Present the Pediatric Cancer Survivor Program at Princess Margaret Cancer Centre. 2. Describe the role of the NP in the AfterCare programs at Princess Margaret Cancer Centre and SickKids. 3. Highlight transition efforts to empower adolescents transitioning to Adult AfterCare. Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

17 The Adult AfterCare Program Weekly General AfterCare clinic Weekly neuro-oncology AfterCare clinic Patients Seen (2013) Number Total patients general clinic 471 New patients general clinic 85 Neuro-oncology patients 93 New Neuro-oncology patients 36 Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

18 The Princess Margaret Aftercare Program General clinic Neuro-oncology Radiation Oncologist 2 2 Neuro-oncologist x Nurse practitioner x x Nurse x x Health psychologist x (x) Neuro-psychologist (x) (x) Social Worker x (x) Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

19 Aftercare Nurse Practitioner Cross-appointed to both pediatric and adult centres Goals of the role: Physical link between programs Facilitate communication & standards of care Ensure consistency of information and harmonization of surveillance guidelines Standardize the transition process Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

20 Transition Challenges: Different Cultures Paediatric System Family-centered Fewer patients Physically appropriate for children Multi-disciplinary team and supports are readily available Adult System Patient-centered Large # of patients Physically appropriate for adults Limited team and resource support Providers may have limited exposure to paediatric specific conditions Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

21 Good 2 Go Transition Program: Program Goals To prepare all youth with chronic health conditions to leave SickKids by the age of 18 years with the necessary skills & knowledge to: Advocate for themselves Maintain health-promoting behaviors Utilize adult health care services appropriately & successfully Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

22 Good 2 Go: Resources Help programs develop tools & resources Give workshops & presentations Direct education to patients & families Literature regarding transition Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

23 Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

24 Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

25 POGO Survivor Care Plan Package Personalized Treatment Summary, Exposure Driven Risks and Follow-Up Plan Portable Passport to Health Late Effects & Healthy Lifestyles Emotional Health & Well- Being Education & Employment Survivor Links Booklet Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

26 Passport to Health Healthcare innovation Survivor care Family assistance Population data Policy development Education Research

27 SickKids multi-disciplinary AfterCare Clinic Paul Nathan MD, MSc Director, AfterCare Program The Hospital for Sick Children, Toronto

28 Aims 1. Describe the AfterCare program at SickKids as an exemplar of Ontario s LTFU network 2. Present data on patterns/predictors of LTFU clinic use among adult survivors of childhood cancer across the province

29 The SickKids AfterCare Program Weekly clinic General AfterCare clinic Monthly HSCT AfterCare clinic (2014) Monthly neuro-oncology AfterCare clinic Two hour pre-clinic multi-disciplinary meeting

30 Sears Cancer Clinic

31 General clinic Neuro-oncology HSCT Pediatric oncologist Endocrinologist x x Transplanter x Neuro-oncologist Radiation oncologist x x Nurse practitioner (0.5) x x x Nurse (0.8) x x x x Health psychologist (0.6) x x x Neuro-psychologist (0.9) x x x Dietitian (0.2) x x x

32 Subspecialty relationships Established relationships with: Endocrinology (in clinic) Cardiology (clinical and research) Cancer genetics Nephrology Access to all other medical/surgical subspecialties

33 Annual statistics Number Total visits 466 New patients 66 Transfers out 64 Neuro-oncology visits 90 Allogeneic BMT visits *

34 CHEO & TOHRCC Ottawa KRCC at KGH Kingston SickKids & PMH Toronto CH,LHSC London MCH, HHS Hamilton

35 Adult LTFU clinic use 3917 survivors (dx: ) Median 7.9 years from entering adulthood 1700 (43%) with 1 LTFU visit as an adult 6921 LTFU visits (0.18/person year)

36 Predictors of attendance: More likely Hazard Ratio Female 1.2 Low deprivation 1.5 Treatment intensity (ITR 4) 2.9 Radiation (brain/chest) 1.4/2.2 Alkylating agents (CED) 1.6

37 Predictors of attendance: Less likely Hazard ratio Distance (50-99/>100km) 0.77/0.65 Diagnosed prior to LTFU program 0.7 Not significant: annual exam by primary care physician (HR 1.1)

38 25-49 km 23% km 17% 100 km 17% Proportion attending at least one adult LTFU clinic 100 km 29% 10-24km 22% <10 km 21% km 42% Distance from LTFU center (N=3917) km 10-24km 48% 50% <10 km 44%

39 Emergency department use 14,050 ED visits (0.41/person year) Variable RR of ED use* Prior LTFU attendance 0.81** Female 1.29 Diagnosis CNS 1.33 NBL 0.86 Lowest SES 2.02 Prior recurrence/smn 1.30 Anthracycline> 250 mg/m Annual exam in prior year *Time varying binary covariate **Time varying cumulative count covariate: each additional LTFU visit decreases ED rate by 5% (p<0.0001) NS