Measuring Health From Children’s Own Perspectives
Why do children say they are healthy? Is it a lack of physical symptoms or emotional distress? Is it a positive state of happiness? Do friendships, family, and school play a role? How are the physical, mental, and social aspects of health connected?
These questions, and many more, are being addressed by a new research program led by Christopher B. Forrest, MD, PhD, the Mary D. Ames Endowed Chair in Child Advocacy, with a $4.4 million grant from the National Institutes of Health through the Patient Reported Outcomes Measurement Information System (PROMIS) network.
Most of us know what we think of as “healthy,” but a common framework for measuring health in children has eluded scientists.
“Measuring only how the body is functioning fails to capture the breadth of factors that affect children,” says Dr. Forrest, “especially those that are part of a child’s personal experience, such as symptoms, feelings, well-being, and a sense of belonging in family and school.”
Evaluations of medical care have traditionally focused on clinical end points, but many outcomes of healthcare are known only to the patient, and can be different for everyone. And, because parents and children provide complementary views of child health, the perspective of the child and the child’s parents are needed to gather the information that is required to optimally manage disease.
To complicate matters, as children grow and develop, their interactions with their parents and environments change. As these changes happen, factors that can cause stress – like how children perceive their interpersonal relationships – become more important.
The goal of PROMIS is to provide researchers and clinicians access to efficient, precise, valid, and responsive adult- and child-reported measures of health and well-being. Dr. Forrest is extending the work of PROMIS by developing a set of developmentally appropriate measures to capture children’s health through self-reported responses from children as young as 8 years of age. He is also developing an edition for parents, whose assessments of their child’s health may be merged with the child’s own assessment to provide a richer evaluation of health that is more predictive of future outcomes than either assessment would be alone.
“Children’s self-assessed health is the foundation for being able to embrace their childhood and take part in activities that stimulate their development and allow them to flourish,” says Dr. Forrest. “Figuring out how children use physical, mental, and social resources to successfully adapt to the demands of their environment and overcome illness may lead to improved research and clinical practices that address the factors that matter most to children and their families, and may help clinicians promote health throughout a patient’s life. As this effort matures, PROMIS measures are likely to become part of the electronic health record, because they will be important outcomes that clinicians, patient, and families will want to monitor in response to treatments.”
Dr. Forrest’s group will use the patient-reported outcome tool to better understand pediatric perceived health in inflammatory bowel disease (IBD), one of the most common pediatric chronic diseases. IBD can lead to symptoms like abdominal pain, weight loss, and growth delay, and can cause children to need to visit the bathroom more frequently than their peers.
IBD symptoms can be embarrassing and socially limiting, especially in situations that are not readily accessible to the bathroom like trips to the mall or participating in sports. Additionally, common steroid treatments can have negative side effects like facial swelling, acne, and depression, all of which may have negative implications for children and adolescents.
“Considering the physical, mental, and social challenges associated with IBD and the rapid changes in therapy for this disorder, the need for tools that measure outcomes in pediatric patients is acute,” says Dr. Forrest. “By using IBD as a model, we will develop tools for pediatric chronic diseases that will advance the science of pediatric clinical trials and translational research, while uncovering previously unknown effects of pediatric healthcare.”