When a child is diagnosed with cancer, parents suddenly become medical advocates, emotional anchors, and fierce protectors. One of the most potent tools in pediatric cancer care is something you might not be familiar with: Patient-Reported Outcome (PRO) surveys.
These reports go beyond lab tests and scans. They capture how a child feels—physically, emotionally, and mentally—throughout their treatment journey.
Last year, the National Cancer Institute shared the results of two clinical trials focusing on the outcomes of cancer care when incorporating PRO surveys for patients ages 8 to 18. The results? Kids who shared their cancer symptoms and side-effects with their care team through PRO surveys began experiencing fewer symptoms because of more targeted supportive care!
That’s great news! But what happens when the patient is too young to communicate clearly? Never fear. Younger pediatric cancer patients aren’t left behind. It’s simply where parents and caregivers step in as vital partners in care.
Let’s dive in deeper.
PROs are structured tools that help healthcare teams understand a patient's symptoms, side effects, and emotional wellbeing. They’re often used in cancer treatment to improve care quality and personalize support strategies.
For pediatric patients, especially those who are younger, these reports may rely on proxy reporting—where a parent or guardian provides input on the child’s behalf.
Children may experience pain, nausea, fatigue, or emotional distress that they can’t articulate. PROs help identify these issues early, allowing the care team to act quickly. This can nip symptoms in the bud and provide early relief.
Kids respond to cancer treatments in different ways. PRO data gives insight into what’s working and what’s not, allowing swift adjustments to be made for maximum comfort and effectiveness.
PROs create a structured way for parents and providers to track and share concerns, closing communication gaps when children are too young or overwhelmed to speak up. It may be less overwhelming or “on the spot” to fill out a survey.
Regularly recording symptoms helps providers recognize patterns, monitor changes, and assess the impact of medications or therapies. Cancer treatments are getting more individualized, and this kind of data helps ensure your child’s plan is right for them.
And, of course, PRO data contributes to pediatric cancer research, influencing better care standards, support programs, and treatment approaches for future patients.
Not every child can express their feelings. They might be too young, nonverbal, or simply unable to describe things clearly. For obvious reasons, this is one of the biggest concerns for parents of young cancer patients. But your instincts, observations, and voice are critical in overcoming these communication challenges.
Here’s how:
Many hospitals and cancer centers offer tools designed for parents to report on behalf of their children. Be specific, even if something seems small. No symptoms are insignificant.
Changes in sleep, appetite, energy, or behavior can all signal that something’s wrong. Keep a journal or use a tracking app to notice trends. You must be eagle-eyed because your child might not see these things at first!
Ask your child’s care team to use age-appropriate symptom checks regularly. These can include games, visual scales, or storytelling techniques.
You don’t need to wait until the next appointment to talk about what’s going on. If something seems off—call, message, or visit your care team. You are your child’s best observer and their advocate.
These trained professionals utilize play, art, and various activities to help children express their emotions and cope with the treatment process. They’re essential in supporting nonverbal or very young patients.
Keep a notebook or digital record of your medications (include dates and times taken), side effects, emotional changes, and any questions you may have. Share this during appointments to ensure nothing is missed.
When children can’t speak for themselves, parents and guardians become their most powerful advocates. Patient-Reported Outcome surveys, combined with close parental observation and open communication with care teams, ensure every child receives compassionate, responsive care—even when they can’t find the words to ask for it.