Advancing Distress Screening in Pediatric Oncology

Pediatric cancer research and care have made remarkable strides in improving survival rates in Canada and globally, yet psychosocial well-being during and after treatment is often overlooked. ACCESS’ Psychosocial & Survivorship research theme is leading a national effort to change that by standardising distress screening for children with cancer and their caregivers.

The goal is simple but transformative; ensure that emotional and psychological needs are identified early, consistently, and equitably across Canada through evidence-based screening. “A majority of centers report assessing psychosocial needs, but very few are using standardized tools,” explains Leandra Desjardins, Clinician-Scientist, CHU Sainte-Justine and Co-Lead, Psychosocial & Survivorship research theme. “This means families can have very different experiences depending on where they receive care.”

To address this gap, a team of ACCESS researchers conducted a comprehensive review of global screening tools, narrowing hundreds of options down to a small number of validated, feasible measures. Through national consultation, consensus was reached on core tools, including the Symptom Screening in Pediatrics Tool (SSPedi) for children, alongside caregiver-focused tools such as the Distress Thermometer and the Psychosocial Assessment Tool (PAT), which are being adapted and finalized for broader implementation.

Pilot implementation is now underway at leading pediatric oncology centers, including The Hospital for Sick Children (SickKids), CHU Sainte-Justine, Children’s Hospital of Eastern Ontario, and Alberta Children’s Hospital. These sites reflect diverse care settings ensuring that implementation strategies are adaptable from small to large centres nationwide.

For Fiona Schulte, Associate Professor, University of Calgary, Psychologist, Alberta Children’s Hospital, and Co-Lead, Psychosocial & Survivorship research theme, reaching consensus was a critical breakthrough, “Because there were so many tools, we lacked consensus. Now, with a national recommendation, we can move forward with an implementation plan based on evidence.”

Previously, institutions worked in silos, often duplicating efforts and resources. Through ACCESS, teams are now sharing implementation strategies, care pathways, and resource mapping – significantly accelerating progress that might otherwise have taken years.

As part of the implementation and standardising, the team emphasizes that distress screening is not adding workload – which is often the worry for healthcare institutions – “it is about opening conversations early on before they become conditions and challenges”, says Lindsay Jibb, Scientist, Hospital for Sick Children and Co-Lead, Psychosocial & Survivorship research theme. Evidence from adult oncology shows that screening does not overwhelm systems with referrals but instead enables more targeted and effective care in a timely manner and ultimately reduces costs.

From the perspective of a Person With Lived Experience (PWLE), the importance of this shift is profound. Megan Easton, a parent of a childhood cancer survivor and Co-Lead, Psychosocial & Survivorship research theme reflects, “while the care team delivered the best medical care for my child, there were no questions asked about our distress, anxiety, or mental health. We now know that health is holistic and addressing psychological distress is pivotal to addressing issues early.”

For her children, distress appeared in behavioral changes, anxiety, and emotional withdrawal. For the family, the strain was constant but often unspoken. “When your care team asks about emotional well-being, it validates those concerns; families often suppress emotions when interacting with their care providers, so a simple question on how you are coping can create space for conversation and ultimately a pathway for support.”

Without screening, distress does not disappear – it often resurfaces later, sometimes more intensely, particularly in survivorship. For this reason, early identification allows for timely support, preventing escalation into crisis.

Embedding standardised screening into routine care is helping shift pediatric oncology toward a more holistic model – one where psychosocial needs and health is visible, integrated, and prioritized alongside physical treatment for better lifelong outcomes for children and families affected by cancer.