New study finds higher risk of mental health outcomes that persist over time in mothers and siblings of children with cancer
Mothers and siblings of children with cancer experience a higher rate of mental health-related outpatient visits decades after the original cancer diagnosis, according to new research co-led by The Hospital for Sick Children (SickKids) and ICES. The study was published today in the Journal of Clinical Oncology.
“A childhood cancer diagnosis impacts the entire family unit. Even though resources exist to support families affected by childhood cancer, access and availability of these resources is limited during diagnosis and treatment, and almost non-existent after a patient completes treatment,” says Dr. Sumit Gupta, senior author of the study, and oncologist in the Division of Haematology/Oncology and the Garron Family Cancer Centre (GFCC), and associate scientist at SickKids. “This is particularly significant because, as our study shows, the increased rate of mental health visits for mothers and siblings of kids with cancer can persist up to 20 years after diagnosis,” adds Gupta, who is also an adjunct scientist at ICES.
In this study, 8,949 Ontario children diagnosed with cancer between 1988 and 2014 were identified through the Pediatric Oncology Group of Ontario’s Networked Information System (POGONIS). Using anonymized health administrative data, the researchers determined how often the mothers and siblings of these patients interacted with the health-care system for mental health concerns. They found that mothers of children with cancer had a 40 per cent increased rate of mental health visits (or 106 visits per 100 mothers) that persisted over decades, compared to the general population (77 visits per 100 mothers). For siblings, there was a 10 per cent increased rate of visits that began approximately 15 years after the cancer diagnosis compared to the general population.
In addition, the researchers found that mothers of children with cancer were at a particularly high risk for visits related to anxiety disorders (accounting for over half of outpatient visits), while siblings were at higher risk for visits for substance abuse. Even for children with highly treatable cancers needing minimal therapy, mothers still faced higher risk of poor mental health depending on the family’s demographic profile.
“We were surprised to discover that cancer- and treatment-related variables were generally not associated with risk of and severity of mental health outcomes in mothers and siblings,” says Gupta, who is also an Associate Professor in the Department of Paediatrics at the University of Toronto. “What predicted an increased risk of mental health visits were instead demographic variables including being younger when their child was diagnosed with cancer, of lower socioeconomic status, and living in rural areas.”
The study’s findings illustrate the need for resources to support families of children with cancer, not only at the onset of a diagnosis but during and after therapy is complete, the authors say. To help address potential long-term mental health-related outcomes in family members, guidelines and supports should particularly take into account demographic factors in the most vulnerable populations, Gupta explains.
Antonia Palmer, mother of 12-year-old cancer survivor Nate, says: “My eldest son Nate was diagnosed with stage four high-risk neuroblastoma when he was just two years old, and received very aggressive treatment for five years. Throughout his initial treatment and relapse I struggled with mental health challenges, and even now continue to face new ones as we navigate the long-term side effects of treatment. It’s important to realize that these challenges don’t just disappear, and that it’s okay to ask for help and resources. Families shouldn’t be left alone to seek supports – they should be in place early and be proactively available.”
This work was funded by the Canadian Cancer Society Research Institute (CCSRI), and was also supported by ICES, the Pediatric Oncology Group of Ontario (POGO), and SickKids Foundation.
About The Hospital for Sick Children (SickKids)
The Hospital for Sick Children (SickKids) is recognized as one of the world’s foremost paediatric health-care institutions and is Canada’s leading centre dedicated to advancing children’s health through the integration of patient care, research and education. Founded in 1875 and affiliated with the University of Toronto, SickKids is one of Canada’s most research-intensive hospitals and has generated discoveries that have helped children globally. Its mission is to provide the best in complex and specialized family-centred care; pioneer scientific and clinical advancements; share expertise; foster an academic environment that nurtures health-care professionals; and champion an accessible, comprehensive and sustainable child health system. SickKids is a founding member of Kids Health Alliance, a network of partners working to create a high quality, consistent and coordinated approach to pediatric health care that is centred around children, youth and their families. SickKids is proud of its vision for Healthier Children. A Better World.
ICES is an independent, non-profit research institute that uses population-based health information to produce knowledge on a broad range of health care issues. Our unbiased evidence provides measures of health system performance, a clearer understanding of the shifting health care needs of Ontarians, and a stimulus for discussion of practical solutions to optimize scarce resources. ICES knowledge is highly regarded in Canada and abroad, and is widely used by government, hospitals, planners, and practitioners to make decisions about care delivery and to develop policy. In October 2018, the institute formerly known as the Institute for Clinical Evaluative Sciences formally adopted the initialism ICES as its official name. For the latest ICES news, follow us on Twitter: @ICESOntario
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