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Integrating Pediatric PROMs through Digital Health

May 12, 2021
January 17, 2024

Assessing healthcare outcomes on patients from their point-of-view is of great importance. To improve health outcomes for children, Patient-Reported Outcome Measures (PROMs) should be integrated in clinical practice through digital health engagement strategies.

Traditionally, health professionals focused on measuring clinical performance measures to define what constitutes a good outcome. Likewise, state and federal governments and private payors attempting to assess outcomes generally rely on measures such as avoidable readmissions, hospital-acquired infections, and mortality. Solely using clinical performance measures has its downsides (adapted from Implementing Patient-Reported Outcome Measures):

  • Most capture the process of care but fail to capture the very reason that most patients seek care: to improve their symptoms.
  • Many exhibit little meaningful variation across providers and, therefore, fail to differentiate between good and exceptional care.
  • Many are disease-specific, leaving gaps in the ability to measure quality across the full spectrum of care.

Today, healthcare professionals recognize that care should go beyond clinical recurrence indicators by considering patients’ symptoms and health from their perspective. Patient-Reported Outcome Measures (PROMs), which use validated questionnaires to turn a symptom into a numerical score, can help achieve this. When integrated into clinical practice through digital health engagement strategies, PROMs deliver valuable insights into pediatric healthcare quality. 

Pediatric PROMs

In the past, a common misconception that children were too young to accurately assess and explain how they feel to their doctors was commonplace. But new research shows that’s not the case. According to the Agency for Healthcare Research and Quality (ARHQ), there is no longer a debate regarding children’s ability to self-report on their health and health-related experiences. Children as young as 8 years old can accurately respond to questions about their feelings, perception, functioning, and well-being.

In 2004, the National Institutes of Health (NIH) launched the Patient-Reported Outcomes Measurement Information System® (PROMIS®) in response to increased demand for pediatric healthcare quality evaluations. Researchers then applied the PROMIS methodology to develop and validate the Pediatric Global Health-7 (PGH-7) measure, a brief and reliable 7-item PROM that assesses a child’s self-reported physical and mental health. Benefits of the PGH-7:

  • It’s comprehensive and assesses physical, social, and mental health.
  • It takes only takes 1-2 minutes to fill-out.
  • It’s a highly inclusive measure that provides an evaluation of overall health regardless of disease or other clinical category.
  • It’s extremely reliable.

Whatever it is, the way you tell your story online can make all the difference.

Generic vs. Disease-Specific

The PGH-7 is an overall evaluation of one’s physical and mental health and is a generic measure. According to the National Center for Biotechnology Information, “Broader PROMs examine aspects that fit a variety of different conditions and allow comparison across these various medical conditions to assist in the evaluation and the implementation of new methods of providing care and equity of service delivery.”

Disease-specific PROMs are useful to identify specific symptoms and their impact on the function of those specific conditions. For example, the Pediatric Asthma Quality of Life (PAQLQ) measures the most troublesome functional problems to children with asthma. It consists of 23 questions in 3 domains (symptoms, activity limitation and emotional function). Disease-specific PROMs are targeted: any items not clinically relevant to the disease are not included.

Disease-specific scores can’t be compared to those for the general population, which is a common approach to address the impact of a particular disease on health status. Therefore, a combination of generic and disease-specific PROMs is recommended to evaluate the effectiveness of various treatments. For example, the PGH-7 is a reliable and valid method to assess general health among children with asthma. It is useful when administered along with asthma-specific outcome measures (such as the PAQLQ).

Digital Health’s Role in Achieving PROMs

While PROMs are recognized as valuable in the context of patient-centered care, physicians need more resources to support their use. Barriers to PROM use include 1) administration is typically dependent on the patient physically visiting a center of care and 2) collecting PROMs can take valuable time out of clinical encounters, thus posing a challenge for physicians.

To reduce logistical barriers to PROM assessments, health professionals should support digitally-enabled PROMs. Digital health technologies are valuable tools to collect digital-enabled PROMs, completed by patients and caretakers outside of the clinical setting. In particular, digital health can help organizations achieve PROMs by:

1. Providing better patient care. Patient-centered strategies contribute to providing better patient care and improving overall health. For example, physicians can virtually offer the PGH-7 to the child various times throughout a treatment course. The physician can monitor the child’s improvement or decline from afar. In other words, without requiring the child to visit the doctor’s office so frequently.

2. Improving patient-physician communication. PROM evaluations in clinical care can improve patient-physician communication. When PROMs act as a substitute rather than an addition to the consultation, patients feel more comfortable to report emotional, functional, or health-related quality of life issues. This facilitates communication and enhances physician awareness of patients’ problems, allowing for a more consistent and real-time approach to care.

3. Improving the value of care. As the market shifts from volume to value, healthcare professionals can successfully use PROMs to understand patient care outcomes. It’s important that the tool is interoperable with the organization’s EHR. This allows physicians to leverage data in real-time and make appropriate care adjustments from there. 

Takeaways

In conclusion, PROMs are used to measure quality of life, which is often what drives a patient to see a doctor in the first place. By virtually administering and assessing PROMs, physicians can view early improvements or declines in patients’ health, resulting in important improvements in children’s health.

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