Outcomes and Needs of Pediatric Cancer Amputees and their Family Caregivers

Patient-Reported Outcomes and Needs of Pediatric Cancer Amputees and their Family Caregivers: A Caregiver-Led Scoping Review

Project Status:In progress

Knowledge User(s)

Patient and Public Partner

Patient/Public Partner(s)

Erica Deans

Project Trainee(s)

Rachel Hamilton

Funding Source(s)

  • Canadian Institutes of Health Research (CIHR) through the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance

Project Objectives

To synthesize literature on patient-reported outcomes and needs of persons who have undergone a childhood cancer-related amputation and their family caregivers in order to identify current gaps in knowledge for this population and to generate recommendations for future related research.

Research Approach

Scoping Review

Project Lead(s)

Leah Deans

Position: Patient Partner

Leah Deans is the mother to a pediatric cancer survivor. Her daughter was diagnosed with Osteosarcoma of her upper right humerus at the age of 10 years. She underwent intensive rounds of chemotherapy, a full right arm disarticulation amputation, a coma, etc.

Her daughter has survived all of this and much, much more. Currently, her daughter is of 19 years of age, with no recurrence, but the struggles with mental health have been enormous.

Leah Deans and her daughter are excited to be a part of the 2023 patient-driven projects and she feels that research is highly needed in this area.

Leah Deans

Patient Partner

Leah Deans is the mother to a pediatric cancer survivor....

Lindsay Jibb

Position: Scientist, The Hospital for Sick Children
Email: Lindsay.jibb@sickkids.ca

Dr. Lindsay Jibb holds the Signy Hildur Eaton Chair in Pediatric Nursing Research at the Hospital for Sick Children and the University of Toronto and is a Certified Pediatric Hematology/Oncology Nurse. Lindsay’s research program is broadly focused on enhancing quality of life and improving psychosocial care for children, adolescents, and young adults with cancer and their families with focus on: user-centered development and evaluation of digital health technologies for symptom management; interventions to empower and support the health of family caregivers of children with cancer; and child with cancer- and caregiver-oriented research priority identification and engagement in research.

Lindsay Jibb

Scientist, The Hospital for Sick Children

Dr. Lindsay Jibb holds the Signy Hildur Eaton Chair in...

Project Outputs

In Progress