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Education for Health Professionals


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The Gordian Knot of Precision Medicine: Ethical Dilemmas and Psychosocial Impacts

Posted on September 19, 2019 by Jamie Irvine


Presentation Description:
Targeted drug therapies show promise for treating certain types of pediatric cancers. Yet, they also come with serious ethical and psychosocial implications that can have far-reaching impacts on patients, families and health professionals. Using a case-based approach with examples from Canada, Australia and the United States, this workshop will explore ethical and psychosocial implications of tumour sequencing, somatic and germline testing, and other aspects of precision medicine, and discuss potential strategies to address and mitigate them.

Speakers:
Conrad Fernandez, MD, FRCPC
Professor and Head, Pediatric Hematology/Oncology
IWK Health Centre
Senior Scientist, Beatrice Hunter Cancer Research Institute
Dalhousie University

Dr. Conrad Fernandez is Professor and Head of the Division of Pediatric Hematology Oncology at the IWK Health Centre and Dalhousie University. He is the founding Co-Chair of the Children’s Oncology Group (COG) Return of Research Results Committee and Vice Chair of the COG Bioethics Committee. He is the lead of the Ethics Node of the Terry Fox Research Institute PROFYLE Project. He is a member of the Panel on Research Ethics, which informs the research ethics policy of Canada, called the TriCouncil Policy Statement on Ethical Conduct for Research Involving Humans. He is a Senior Scientist and a Chair of the Research Committee for the Beatrice Hunter Cancer Research Institute at Dalhousie University. He is Chair of the COG Renal Tumors Committee and a member of the COG Voting Body Steering Committee.

Dr. Fernandez’s two research passions are the development of clinical trials for children with renal tumours and exploring the many ethical challenges encountered in considering the return of summary or individual research results to participants.

Steven Joffe, MD, MPH
University of Pennsylvania Perelman School of Medicine
Emanuel and Robert Hart Professor of Medical Ethics and Health Policy

Dr. Steven Joffe is the Emanuel and Robert Hart Professor of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine. He serves as Chief of the Division of Medical Ethics and directs two post-doctoral fellowships in bioethics and in the ethical, legal and social implications of genomics. He is also Professor of Pediatrics at Children’s Hospital of Philadelphia.

Dr. Joffe attended Harvard College, received his MD from the University of California at San Francisco (UCSF), and received his MPH from UC Berkeley. He trained in pediatrics at UCSF and in hematology/oncology at the Dana-Farber Cancer Institute and Boston Children’s Hospital.

Dr. Joffe’s clinical work is in pediatric stem cell transplantation. His research addresses the ethical challenges that arise in the conduct of clinical and translational investigation. He has been principal investigator of National Institutes of Health, Patient-Centred Outcomes Research Institute (NIH, PCORI) and foundation-funded studies that examine the roles and responsibilities of principal investigators in multi-centre trials, governance in learning healthcare systems, return of genetic results to research participants, and the integration of genomic sequencing technologies into cancer care. He is a member of the U.S. FDA’s Pediatrics Ethics Subcommittee and of the National Human Genome Research Institute’s Genomics and Society Working Group.

Claire Wakefield, BPsych(hons), MPH, PhD
Director Behavioural Sciences Unit
Sydney Children’s Hospital

Professor Claire Wakefield, registered psychologist, is Director of the Behavioural Sciences Unit at Sydney Children’s Hospital, Australia. She is a chief investigator on grants worth >$26M and has published >140 peer-reviewed articles. Professor Wakefield holds a prestigious NHMRC Career Development Fellowship, and a $2.7M program grant, and is Co-Director of the SPHERE Kids to Adults (K2A): Creating Healthy Futures Clinical Academic Group. She chairs the pediatrics committee for the International Psycho-Oncology Society and founded the first international early career group for professionals working in pediatric psycho-oncology. Professor Wakefield’s team has created and implemented evidence-based resources for bereaved families, parents of children with cancer, and adolescents and young adults with cancer, including 10 clinical decision aids, many of which are now endorsed and disseminated by NSW Health. With increased use of genetic testing and personalized medicine in pediatrics, her team is assessing the psychological impact of new genetic technologies on children and families and is exploring the ethical questions arising in this novel area of medicine. Her team leads the patient-reported outcomes study in the PRISM clinical trial, one of the largest personalized medicine trials for childhood cancer patients worldwide.

Posted in 2018 Symposium, Education for Health Professionals | Tagged 2018 symposium, ethics, psychosocial

Beneath the Surface: The Psychosocial Impacts of Precision Medicine

Posted on September 19, 2019 by Jamie Irvine


VIEW THE PRESENTATION

Presentation Description:
Precision medicine represents arguably the most exciting advance in pediatric oncology in recent decades. Despite great hope for this new approach to making individualized treatment recommendations for children with cancer, there will likely be associated psychosocial challenges for all stakeholders involved, including patients, parents, clinicians and scientists. Precision medicine trials are very complex, meaning that patients’/parents’ understanding about their treatment options might be limited. Healthcare professionals might also find it difficult to manage the psychosocial impacts of precision medicine for their patients. This presentation summarises the key potential impacts of precision medicine for children with cancer, their families and the professionals who care for them. Professor Wakefield will present data from recent systematic reviews, a large-scale acceptability study, plus emerging prospective data from the first 100 families enrolled in the Australian PRISM precision medicine trial for children with high-risk cancer.

Speaker:
Claire Wakefield, BPsych(hons), MPH, PhD
Director, Behavioural Sciences Unit
Sydney Children’s Hospital

Professor Claire Wakefield, registered psychologist, is Director of the Behavioural Sciences Unit at Sydney Children’s Hospital, Australia. She is a chief investigator on grants worth >$26M and has published >140 peer-reviewed articles. Professor Wakefield holds a prestigious NHMRC Career Development Fellowship, and a $2.7M program grant, and is Co-Director of the SPHERE Kids to Adults (K2A): Creating Healthy Futures Clinical Academic Group. She chairs the pediatrics committee for the International Psycho-Oncology Society and founded the first international early career group for professionals working in pediatric psycho-oncology. Professor Wakefield’s team has created and implemented evidence-based resources for bereaved families, parents of children with cancer, and adolescents and young adults with cancer, including 10 clinical decision aids, many of which are now endorsed and disseminated by NSW Health. With increased use of genetic testing and personalized medicine in pediatrics, her team is assessing the psychological impact of new genetic technologies on children and families and is exploring the ethical questions arising in this novel area of medicine. Her team leads the patient-reported outcomes study in the PRISM clinical trial, one of the largest personalized medicine trials for childhood cancer patients worldwide.

Posted in 2018 Symposium | Tagged 2018 symposium, psychosocial

2018 POGO Pre-Symposium Nursing Seminar

Posted on November 22, 2018 by Jamie Irvine


On November 1, 2018 POGO hosted a one-day nursing seminar the day before the 2018 Multi-Disciplinary Symposium on Childhood Cancer. Topics covered included: Practical strategies to improve Patient/Family Education; CAR-T and other Immunotherapies; Survivorship in the Age of Precision Medicine; and Strategies to Maintain Optimism and Build Resilience for Pediatric Oncology Nurses. 

Over 90 nurses and other health care professionals from across Ontario and beyond attended the conference.

VIEW THE PROGRAM

PLENARY SESSIONS

Closing the Gap, Bridging the Divide: How to Effectively Teach Patients and Families
Stephanie Cox, RN(EC), MN, NP-Pediatrics
Angela Filice, RN

Avoiding Information Overload: What do Families Actually Need to Know?
Jen Sullivan, MSN, RN, CPON

Managing Stress and Cultivating Optimism: Enhancing Resiliency in Pediatric Oncology Nurses
Teresa Conte, PhD, CPNP

QUICK-HIT SESSIONS

Management of Fatigue in Children and Adolescents with Cancer and Pediatric Recipients of Hematopoietic Stem Cell Transplants: A Clinical Practice Guideline
Lillian Sung, MD, PhD

CAR-T Cell Therapy: Patient Eligibility, Management, and Nursing Considerations
Colleen Callahan, RN, MSN, CRNP

Stopping Cancer Cell Evasion with Immune Therapies
Sue Zupanec, MN, NP Pediatrics

New Therapies, New Late Effects – Survivorship in the Age of Precision Medicine
Eleanor Hendershot, RN(EC), MN, BScN, NP Pediatrics

BRAF Inhibition and Fusion in Low Grade Glioma
Tara McKeown, MN NP Pediatrics

Posted in 2018 Pre-Symposium Nursing Seminar, Education for Health Professionals | Tagged 2018 symposium, CAR-T, fatigue, immune, new therapies, Nurses, stress

Closing the Gap, Bridging the Divide: How to Effectively Teach Patients and Families

Posted on November 22, 2018 by Jamie Irvine


VIEW THE PRESENTATION

Presentation Description:
A diagnosis of cancer is emotionally distressing news to process for a newly diagnosed pediatric oncology patient and their family. There is an enormous amount of information that these families require to learn about their child’s diagnosis, side effects and treatment.  According to APHON’s Scope and Standards of Practice, educating patients and families about the child’s treatment, side effects, symptom management, care at home, and the family’s readiness and preferred method of learning are essential elements of the pediatric hematology/oncology nurse (2009). Pediatric oncology nurses often do not have formal training on how to educate families. Since nurses provide a large portion of education, it is imperative to have the knowledge and skills required to facilitate this transfer of knowledge. The understanding of health literacy and clear communication are foundational principles for patient and family education.

The presentation will provide educational tools focused on improving the nurse’s content and delivery of information and ability to facilitate client-centered learning, when teaching newly diagnosed pediatric oncology patients and families.

Speakers:
Stephanie Cox
, RN(EC), MN, NP Pediatrics
Nurse Practitioner

Stephanie Cox has been practicing at McMaster Children’s Hospital as a nurse practitioner in pediatric hematology/oncology since 2004. She received her Master’s of Nursing and Acute Care Nurse Practitioner-Pediatrics degree from the University of Toronto in 2004 and her Bachelor Science in Nursing from the University of British Columbia in 2000. Her clinical and research interests include the care of adolescents and young adults with cancer and the supportive care aspects of pediatric oncology therapy. Stephanie currently is the Disease Committee Nurse for the Myeloid Committee at the Children’s Oncology Group. In addition, her most recent focus has been developing and implementing improved educational strategies for pediatric oncology patients and their families.

Angela Filice, RN, BA, BScn, CPHON
Quality and Safety Nurse

Angela Filice earned her bachelor of arts in psychology at the University of Western Ontario in 2000 and went on to complete her bachelor of science in nursing at McMaster University. She has worked in the inpatient pediatric hematology/oncology unit for the past twelve years.

In 2016, she was awarded an Advanced Clinical Practice Fellowship with the Registered Nurses’ Association of Ontario entitled “educational strategies to improve content and delivery of education by pediatric oncology nurses to families of pediatric patients that are newly diagnosed with cancer.” She has delivered several nursing workshops on improving delivery of patient education.

Angela has been in the Quality and Safety nurse position for the past year where she works on quality improvement projects and safety initiatives.

Posted in 2018 Pre-Symposium Nursing Seminar | Tagged 2018 pre-symposium, nursing, stress

Avoiding Information Overload: What do Families Actually Need to Know?

Posted on November 22, 2018 by Jamie Irvine


VIEW THE PRESENTATION

Presentation Description:
Patients and families are overwhelmed after a child receives a cancer diagnosis. Current literature supports limiting educational content at the time of diagnosis to essential topics necessary for families to know in order to safely care for their child at home. The approach to new diagnosis education should be family-centered, and tailored to the child’s diagnosis, treatment plan, and age or developmental level. In addition, education should be multidisciplinary, involving nursing, providers, and the psychosocial team to ensure that all facets of the child’s care are addressed, including child and family coping.

This presentation provides an overview of current evidence supporting the education of newly diagnosed pediatric oncology patients and families, as well as the application of expert recommendations into practice.

Speaker:
Jen Sullivan
, MSN, RN, CPON
Oncology Patient/Family Education Specialist, Cancer Centre
The Children’s Hospital of Philadelphia

Jeneane received her Bachelor of Science in Nursing from Georgetown University, and has masters degrees as a pediatric nurse practitioner and in nursing education from Villanova University.

Jeneane Sullivan worked as an inpatient oncology/BMT nurse at Children’s Hospital of Philadelphia (CHOP) for 6 years before taking on her current role as Oncology Patient and Family Education Specialist at CHOP. In this role, Jeneane has built an education program for pediatric oncology patients and their families, developing resources and education from new diagnosis through survivorship.

Beyond oncology, she is co-leading the enterprise-wide Digital Health Education Initiative at CHOP. In addition, Jeneane serves as the nursing member-at-large for the Children’s Oncology Group (COG). Jeneane has co-authored publications on oncology patient/family education, and is the co-editor of the COG Family Handbook: New Diagnosis Guide. She has presented on patient/family education and CHOP’s unique program regionally, nationally and internationally. 

 

Posted in 2018 Pre-Symposium Nursing Seminar | Tagged 2018 pre-symposium, nursing

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