A new approach to cancer treatment for kids
A study led by Associate Professor Lindsay Jibb of the Lawrence Bloomberg Faculty of Nursing has examined the perspectives of parents and caregivers of children who have been diagnosed with B-lineage acute lymphoblastic leukemia (B-ALL) and are receiving blinatumomab a form of immunotherapy administered mostly at home—often via a backpack caring the blinatumomab infusion and pump.
Blinatumomab has revolutionized cancer treatment for kids with acute lymphoblastic leukemia, improving survival rates, and reducing side effects compared to conventional chemotherapy.
“This has quickly become the standard of care for kids with B-ALL in North America, and it was important for us to understand how parents were coping and managing the option to administer this treatment at home,” says Jibb, who is also a Scientist and Signy Hildur Eaton Chair in Paediatric Nursing at The Hospital For Sick Children (SickKids).
The study published in the journal Pediatric Blood & Cancer, found that the majority of parent and caregiver participants said this form of at home treatment, despite their initial reservations and anxiety about providing treatment at home, did end up improving both their own quality of life and that of their child.
“As they gained confidence in administering the treatment, parents and families were able to return to some sense of routine or normalcy, like going to the grocery store, or including their child in outings with siblings. They felt that would not have been possible without the Blina backpack,” says Jibb.
That is because blinatumomab requires a 28-day infusion as a course of treatment, with children usually requiring two or three cycles. This can be done in hospital as an inpatient, or at home with parents managing treatment using a portable pump to home the continuous infusion, that requires bag changes every 48 or 96 hours, or every 7 days.
Multi-site study captures diverse range of experiences
Jibb and the research team included parents and caregivers from three clinical sites, capturing a diverse range of experiences and perspectives. These included SickKids in Toronto, the Children’s Hospital of Philadelphia (CHOP) and Texas Children’s Hospital in Houston. Researchers were also able to conduct participant interviews in other languages such as Spanish and Ukrainian using hospital nurses as translators, to get a wider range of perspectives and understand any barriers for caregivers in administering this treatment.
Key themes that emerged from participant interviews centered on child happiness, caregivers’ ability to focus on self-care, and the ease of use.
“We heard from parents that their child was happy and even singing after being discharged from the hospital, and that the maintenance of their child’s good physical health during treatment was a major benefit,” says Jibb.
The study also revealed some recommendations from parents to make the process easier for new caregivers, including a physical booklet with illustrations they could take home, showing an example of how child carrying the bag, or what to expect during a bag change day, at home or in hospital.
“Blinatumomab represents a major advancement in pediatric leukemia treatment, and our research has helped shape best practices for delivering this therapy at home to improve care for countless patients and their families,” says Jibb.
Nurse Practitioner behind the Blina Backpack
The Blina backpack is the brainchild of Sue Zupanec, a nurse practitioner at SickKids and the lead author on this study. In 2017, during the first clinical trial of blinatumomab and its at-home treatment, she saw that the portable bags being given to parents were not designed for children. They fit poorly and were not adjustable to the lifestyle of children or their parents.
“Children run, jump and play, so we heard from parents and caregivers that they really wanted a backpack with some features to make it more child-friendly, including secure backings, adjustability, padding around the pump, and washability,” says Zupanec who is also an adjunct lecturer at Bloomberg Nursing.
Her development of the Blina backpack and this study exploring parents and caregiver perspectives is an example of the unique position of nurses and the impact they can have in health care through research.
“I don’t think this study or the redesign of the backpack would have happened without the careful eye of nursing on it,” says Zupanec. “We are the biggest witnesses of challenges faced by our patients and their families, and it is important that we find ways to co-design solutions with them.”