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Healthcare for children has been improving drastically over the past century and beyond, and we’ve seen much lower rates of infectious diseases thanks to the advent of vaccines and modern medicine.1 As a result, this reduction in illness has led to better health-related quality of life (HRQoL) for children and adolescents. Additional tools, like patient-reported outcome measures (PROMs) for minors, add important insights about the health of children in ways that advance the development of new treatments to improve their overall health.1
While it can be challenging for younger people to accurately report on the impact of diseases and symptoms, through PROM surveys and with the help of parents and caregivers, children and adolescents can begin to offer invaluable insights on their unmet needs that provide a pathway to improving overall HRQoL beyond the scope of traditional medical care. Learn more about how pediatric PROMs can be used to improve child and adolescent outcomes in both clinical practice and research.
It’s proven that using PROMs in routine pediatric care can help improve HRQoL, because the enhanced communication about a child’s health status gives healthcare providers additional information that can be used to treat them and solve issues.1
PROMs reveal information on health status and HRQoL factors in children the same way they do in adults, facilitating a better understanding between the patient and provider to ensure care aligns with what the patient needs. However, the two age groups require different yet specific survey designs, as all PROMs need to be validated for the exact audience—in this case, pediatrics vs. adults—that they are intended to help.
This distinction between healthcare for pediatric patients and adult patients is especially noticeable when it comes to drug development, which is an area of research that has been using PROMs to gain additional insights on patient outcomes. Pharmaceutical companies developing drugs for several rare pediatric diseases—of which only five percent are estimated to have a treatment—can use PROMs for product analysis throughout research and clinical trials. Doctors can continue to examine the efficacy of these drugs using PRO instruments in the clinical care of rare diseases, so the goals and applications of pediatric PROMs are varied and extremely valuable.
Research shows that children can answer PROMs accurately so long as the instrument is specifically designed for pediatric clinical practices, which runs counter to the earlier belief that they are too young to give useful answers to medical practitioners.2 The Agency for Healthcare Research and Quality has found that children as young as eight years old can provide reliable and valid answers about their health, including their perceptions, feelings and more.2
When it comes to using PROMs in pediatric clinical practices, many healthcare organizations face logistical challenges incorporating PROMs into their services. Often the practice can’t find a flexible, digital solution for the survey, which means that the surveys don’t get used and providers never have a chance to incorporate them into their regular plan of care for children and adolescents.2
Additionally, some providers don’t accept the PROM responses as effective and accurate, either due to a lack of experience with them or a lack of trust in the results. Other providers face difficulties incorporating PROM results into their plan of care for adolescent patients and interpreting PROM scores using available guidelines. If these barriers can’t be overcome, then PROM usage can’t provide help or insights in a clinical session.
Taking these factors into consideration, it’s crucial to focus on training providers to use pediatric PROMs in their regular practice and to ensure they use them consistently. While a digital investment in PROM usage for pediatric clinics can eliminate the barriers that frequently make PROM usage ineffective at the clinical level, it’s not always a possibility.
Beyond clinical practice, pediatric PROMs have an important role in research as well. Studies are starting to realize the essential role that PROMs can potentially play in evaluating the HRQoL for children and adolescents when conducting research on the pediatric population.3 But there is still a long way to go before PROMs can be reliable research tools for clinical studies, unfortunately. A June 2021 study of a range of pediatric PROMs found that none were capable of meeting ISPOR-recommended good research practices alone, and concluded that more research is needed to figure out a path forward.4
One area where PROMs can potentially excel in improving pediatric outcomes is in the research of rare pediatric disease. While generic PROMs serve as a vital sign across all diseases and conditions for informed clinical practice, disease-specific PROMs can offer deep insights into pediatric HRQoL for patients with rare diseases, even when faced with a smaller patient population base. The development of PROMs for rare pediatric disease has the potential to move research on these specific conditions ahead, and when used in conjunction with generic PROMs, can pool data to offer additional solutions.5 There is a long way to go before these will become standard in research, but the groundwork from effective clinical practice PROM usage will certainly help advance pediatric PROMs in the research space as well.
Going forward, it is important for healthcare organizations to consider the existing studies around the effectiveness of PROMs when they look for different ways of implementing and designing PROMs in pediatric practice. However, since these studies are largely focused on one specific area and typically just focused on adult care, pediatric organizations must be able to view these findings through that narrow lens to find actionable solutions for their specific pediatric needs.
At QualityMetric, we are the standard in patient-reported outcomes. That’s why our new generic and disease-specific pediatric PROMs, brought to you by our recent HealthActCHQ acquisition, aid in the treatment evaluation for children beyond traditional clinical markers to give researchers and healthcare professionals a better understand of the full benefits of treatment in improving the lives of patients.
Our new pediatric PROMs are specifically designed to be used by pediatric practices and in pediatric research, offering unique insight into the HRQoL for children and adolescents between five to eighteen years of age. The surveys capture, analyze and interpret health outcomes for a variety of conditions by coupling meaningful data with multidisciplinary research expertise to gain a deeper understanding of patient experiences and preferences.
Contact us today to learn more about our portfolio of pediatric patient-reported outcome surveys for clinical care, research and product development, or explore our full suite of validated pediatric measures.
