POGO’s 2019 Seed Grant Recipients
Project Title: Understanding End-of-Life Health Care Utilization in Adolescents and Young Adults with Advanced Cancer
Principal Investigator: Alisha Kassam, MD, MPH, FRCPC and Sumit Gupta, MD, PhD, FRCPC
Co-Investigators: Abha Gupta, MD, MSc, FRCPC, Adam Rapoport, MD, MHSc, FRCPC, Amirrtha Srikanthan, MD, MHSc, FRCPC, CHE, Craig Earle, MD MSc FRCP(C), Kimberley Widger, RN, PhD, CHPCN(C), Rinku Sutradhar, PhD
Project Summary: The investigators hope to provide baseline data on the intensity of end-of-life care being delivered specifically to adolescents and young adults in Ontario.
Impact/Relevance: Data from this study will help identify vulnerable populations, inform clinicians and policy makers, and suggest future research interventions to improve the quality of palliative and end-of-life care delivered to adolescents and young adults with cancer.
Project Title: Development and Validation of Proxy-report Symptom Screening in Pediatrics Tool (SSPedi) and Self-report mini-SSPedi in Children Younger than Eight Years.
Principal Investigator: Lillian Sung, MD, PhD
Co-Investigators: Deborah Tomlinson, RN, MN, L. Lee Dupuis, RPh, PhD, Paul Gibson, MD, FRCPC, Donna Johnston, MD, FRCPC
Project Summary: This project focuses on validating a symptom screening instrument for children receiving cancer treatments who are aged 2 to 7 years.
Impact/Relevance: Most children with cancer will experience severe and distressing treatment-related symptoms. This research is a first step toward improving symptom control in younger children with cancer by enabling them to communicate bothersome symptoms to family members and providers.
Project Title: Validating a Questionnaire to Assess the Use of Complementary Health Approaches Among Children with Cancer and Their Parents
Principal Investigator: Jennifer Stinson, RN-EC, PhD, CPNP
Co-Investigators: Mohammad Alqudimat, PhD Student (Nursing), Karine Toupin April, PhD, Lindsy Jibb, RN, PhD, Paul Nathan, MD, MSc, FRCPC, Charles Victor, MSc
Project Summary: Using a phased approach, the investigators will conduct electronic surveys with experts to determine how to modify the items of the existing questionnaire. Youth with cancer, parents of youth with cancer, and cancer healthcare providers will then take part in individual interviews to determine what changes should be made. The questionnaire will be modified based on the results of each round of interviews.
Impact/Relevance: The proposed study will provide an instrument that will enable healthcare providers to initiate clinical discussions about the benefits and potential harms of complementary health approaches (CHA). Routine use of this instrument may help healthcare providers and researchers to determine what approaches are being used and which may be helpful, thus leading to the development of a new CHA research agenda for pediatric oncology.
Funding: $ 14,999.00
POGO’s 2018 Seed Grant Recipients
Eric Bouffet, MD, FRCPC
Project Title: Parent-Child Communication When a Child Has a Life-Threatening Illness
Principal Investigator: Eric Bouffet, MD, FRCPC
Co-Investigators: Adam Rapoport, MD, MHSc, FRCPC; Ceilidh Eaton Russell, PhD(c), CCLS
Project Summary: The investigators wish to interview parents and children in order to learn how they talk together about the child’s illness, its impacts on their lives, their feelings and worries, including any about the future or death.
Impact/Relevance: Helping children and parents share their thoughts and feelings, and support each other, can strengthen their relationships and improve quality of life. This project will teach caregivers how to support children’s and parents’ coping, well-being and quality of life during and after therapy no matter what the prognosis, potentially helping every family touched by childhood cancer.
Denise Mills, MN, NP Pediatrics
Project Title: Improving Quality and Consistency in Family Education Prior to First Discharge Following a Pediatric Cancer Diagnosis
Principal Investigator: Denise Mills, MN, NP Pediatrics
Co-Principal Investigator: Sue Zupanec, MN, NP Pediatrics
Collaborators: Angela Punnett, MD; Vicky Breakey, MD; Paul Gibson, MD; Lillian Sung, MD
Project Summary: In this study, investigators want to ask parents if they like and can easily learn information about how to care for their child with cancer from short videos that highlight key points, have visual cues, and provide case examples. If parents find short videos useful and helpful for learning, investigators hope they will feel more confident to care for their child and have lower levels of anxiety.
Impact/Relevance: Investigators are proposing a novel video-based education program for parents and caregivers, which they hypothesize will lead to improved understanding and confidence to care for children newly diagnosed with cancer, after the first discharge from hospital. The greatest impact will be on the parents and caregivers with a goal to increase knowledge, preparedness and confidence, while minimizing distress and anxiety.
Lindsay Jibb, RN, PhD
Project Title: Needs Assessment Focused on Home-Based Care for Children with Cancer: A Qualitative Descriptive Study Using the Perspectives of Children, Parents and Healthcare Providers
Principal Investigator: Lindsay Jibb, RN, PhD
Co-Investigators: Donna Johnston, MD; Julie Chartrand, RN, PHD
Project Summary: Children with cancer, their parents and their healthcare providers will be interviewed to find out what they think about receiving some of their cancer care at home and any needs they have related to home-based care. Thus far, research has shown that receiving care for cancer can be tough for children and their families. Increasingly, some cancer care is being delivered to children in their homes, but little is still known about what children, parents and healthcare providers think about children getting cancer care at home and how research can make this care better.
Impact/Relevance: Once investigators complete the study and more is known on these topics, they will be able to decide on what research to do to provide the best possible home care to children with cancer. Investigators hope that by providing high-quality home-based care to children with cancer, there will be an improved quality of life for the children, as well as for their families.
POGO’s 2017 Seed Grant Recipients
Anne Klassen, DPhil (Oxon)
Project Title: Establishing Content Validity of FACE-Q Kids for Pediatric Head and Neck Cancer
Principal Investigator: Anne Klassen, DPhil (Oxon)
Co-Investigators: Dr. David Dix, Dr. Paul Nathan, Dr. Eric Bouffett
Project Summary: Patient-reported outcome instruments (PROs) are questionnaires that measure outcomes (eg, quality of life) that matter to patients by asking them directly. The study
aims to determine if a new PRO called FACE-Q Kids can be used in head/neck (HN) cancer.
Impact/Relevance: A facial difference can have an important impact on a person’s QOL.
In order to measure outcomes in pediatric HN cancer, carefully conceptualized, valid, reliable,
and responsive PROs are needed. Given that appearance and facial function are concepts not well addressed in current cancer PROs, it is anticipated that the FACE-Q Kids-oncology module will be
widely adopted in HN cancer treatment studies and clinical practice.
Brian Timmons, PhD and Vicky Breakey, MD, FRCPC, MEd
Project Title: Using Exercise to Boost the Immune System of Children with Acute Lymphoblastic Leukemia
Principal Investigator: Brian Timmons, PhD and Vicky Breakey, MD, FRCPC, MEd
Co-Investigators: Dr. Adam Fleming, Dr. Stacey Marjerrison, Dr. Joyce Obeid, Dr. Lehana Thabane
Project Summary: Acute lymphoblastic leukemia (ALL) is the most common type of childhood cancer. Treatment for ALL lasts 2-3 years and results in a weakened immune system, putting kids at risk for infection. The combination of inactivity and the side effects of chemotherapy increase their risk of obesity and other illnesses, which can lead to further health issues in adulthood. Previous research shows that as little as 30 minutes of exercise in healthy kids can boost special cells in the blood called natural killer cells. Natural killer cells help to find and destroy viruses and cancer cells, and can even direct other types of cells to help.
Impact/Relevance: Showing an increase in natural killer cells after exercise in patients with ALL is the first step in understanding the role that exercise might play in boosting the immune system. By understanding the effects of exercise on the immune systems of children being treated for ALL, the study hopes to improve their health during therapy and beyond.
Petros Pechlivanoglou, PhD
Principal Investigator: Petros Pechlivanoglou, PhD
Co-Investigators: Dr. Jason Pole, Dr. Sumit Gupta, Dr. Paul Nathan, Dr. Tal Schechter-Finkelstein, Dr. Wendy Ungar
Project Summary: Acute Lymphoblastic leukemia (ALL) is the most common childhood cancer. Although most children with ALL can be cured, those that relapse will have much lower chances to survive. Stem cell transplant (SCT) is the standard therapy for these children but is associated with high death rates and long-term complications. An alternative to SCT was developed recently: chimeric antigen receptor T-cells (CAR-T) therapy. CART therapy is very effective but also very expensive; one course of therapy costs approximately $500,000 and is currently available only in the US. We propose a study to evaluate the “value-for-money” of CART therapy compared to SCT for children with high-risk ALL who have relapsed.
Impact/Relevance: This study will provide POGO and provincial health policy makers evidence around the value-for-money of CART therapy and and so help them make better informed funding decisions.