The challenge to offer a second hematopoietic stem cell transplantation to children and young adults with relapsed hematological malignancies: Using a qualitative approach to explore health care professional, parental and patient decision-making variables

When cancer returns: Understanding care decisions in pediatric relapse

When a child or adolescent experiences a relapse of their haematological malignancy (such as leukemia or lymphoma) after an unrelated hematopoietic stem cell transplant, families face incredibly tough decisions. Should they focus on supportive care instead of curative options? Or should they try another transplant, despite the challenges and risks involved?

With $50,000 from the MOHCCN’s Patient Voices in Research Initiative, a team of Toronto-based researchers led by Dr. Joerg Krueger and Deborah Tomlinson, RN, at The Hospital for Sick Children (SickKids) aim to understand what drives patients and families’ decisions and priorities. By interviewing parents, guardians and patients as well as health-care providers, they aim to better understand the patient and caregivers’ experiences and identify the factors influencing their choices.

Their findings will not only guide conversations between health-care providers and families – helping to ensure their voices are heard and their unique needs are addressed – but may also inform treatment decisions, advance precision medicine by integrating lived experiences and provide better support for families navigating similar challenges.

Read our Q&A with the research team to learn more about this project. 

How would you describe your project to a lay audience? 

• Children and adolescents, who have recurrence of haematological malignancy after an unrelated hematopoietic stem cell transplantation (HSCT) have a poor prognosis.
• At this stage in the family journey, parents/guardians and patients are often presented with the decision to either continue with non-curative supportive care alone or pursue further treatment with curative intent, which, in most cases, requires a second HSCT.
• We will interview families, asking about their priorities and experiences in decision-making following cancer relapse after HSCT to provide a better understanding of the patient and family’s lived experience.
• We intend to use our findings to guide future conversations between health-care professionals, patients and families in these challenging situations. 

What do you hope to achieve by the end of the project?

We hope to identify the factors influencing the decision-making of parents/guardians, patients and health-care professionals when the patient has a relapsed haematological malignancy, following a first HSCT.

Why is this project important? How does it advance precision medicine for cancer? What potential impact could it have on patients?

• The data collected will provide information to help inform treatment choice discussions, while supporting the voices of parents/guardians and patients in these very difficult situations.
• The experience of every family and child is unique. Having an awareness of the potential for different treatment options and knowledge of the factors influencing decision-making for these families can assist precision medicine by guiding treatment options.
• While clinical and prognostic factors need to be considered, health-care professionals need to be equipped with information from the lived experiences of patients and families who have previously been presented with decisions when the child relapses following a HSCT. This information can be presented, where appropriate, to families facing similar situations, with acknowledgement that the families have prior knowledge and perspective.

This funding opportunity was designed and adjudicated by members of the Network’s Patient Working Group, who are all cancer patients and survivors or caregivers and family members. Why do you think it’s important for the Network to fund this type of patient-centric research? Have you ever encountered a funding opportunity like this before?

• We believe that patient-centric research is important to elevate family voices and use their lived-experience to inform, and eventually improve, their future experience with care and treatment decisions. We also hope that this kind of research will  help minimize some of the long-term psychosocial concerns reported by families.
• In previous research, we have taken advice from parents or a parent group, such as the Ontario Parents Advocating for Children with Cancer (OPACC), but this is the first adjudication we have encountered that is designed and adjudicated by cancer patients, survivors and caregivers.