Children are patients too

Today (Wednesday 15 February) marks International Childhood Cancer Day. PFMD member Sarah Krüg, Executive Director of CANCER101 and former lead of pediatric disease management pathways at Memorial Sloan Kettering Cancer Center reflects on the need for collaborative patient engagement in the setting of childhood disease.
Cancer isn’t one size fits all. The cancers that develop in children are often different from those that adults develop. Childhood cancers are not strongly correlated to lifestyle and environmental risk factors, in contrast to adult cancers. In addition the long-term side consequences of treatment can be debilitating, including psychological and emotional effects that can manifest later in life.
The journey that a child with cancer experiences and its effect on the entire family varies from the journey an adult might experience. The needs, the coping mechanisms, the treatments and their effect, the quality of life and the overall impact will be different from one child to the next.
One of the greatest barriers in the crusade against childhood cancer and in ensuring the voices of these young patients and their caregivers are heard is that we have a fragmented community. With a range of childhood cancer types and many effective organizations across the globe to support various needs, there isn’t one dominant organization with a unified message that collectively advocates for the voiceless.
Healthcare is rapidly changing, and one of the most fundamental changes is the increased engagement of patients, caregivers and their families. Today, patients and their caregivers are using their voices to drive conversations, design research and clinical trials, influence drug development and regulatory guidelines, and assess the benefits and risks of new therapies, among other things.
PFMD serves as a catalyst, helping to unify isolated efforts providing us with a forum to use our individual voices to advocate for change and also learn from one another and help us build upon these efforts so that we’re not all out there recreating the wheel as we engage patients and caregivers. This need to connect the dots is a major driver for one of PFMD’s core projects. We have developed a patient engagement mapping and networking tool that captures information about the wide range of activity already out there. It categorizes and ‘maps’ each initiative entered in the online tool to show where it fits in the landscape but importantly allows us to begin to find each other – to find good practice and connect so we work together.
It’s critical we unite to ensure that the needs of children affected by cancer and their families are prioritized globally. When we aim to engage and involve patients we need to remember that children are patients too – we need to make sure we seek their opinions even if indirectly. “What matters to you?” needs to be our first question. Children are blessed with the gift of resilience and it’s up to us to unite and synergize efforts to understand their needs and to help pave the path for their future.
Photo credit: Happiness, but Willem_Zijlstra, used under Creative Commons license