Measuring Patient-Reported Outcomes

Tools for Measuring the Impact of Patient-Centered Outcomes Research

One major difference between PCOR and other types of Comparative Effectiveness Research is the need to measure patient-centered outcomes. Patient-centered outcomes are those that are meaningful to patients or their families.  Many outcome measures routinely collected and used by healthcare team members, such as lab values, lack that meaningfulness from a patient perspective. In contrast, patient-centered outcomes tend to focus on the patient’s symptoms or function. Some examples include quality of life measures or symptom scales. PROKids has expertise in identifying patient-centered outcomes to fit various research projects and with engaging stakeholders in this process, as well as preparing the measures and outcomes sections of successful PCOR funding applications. In addition, validated measures may not exist for an outcome that matters to patients or families. PROKids has worked to develop and validate measures of patient-centered constructs such as fear of low blood sugars, parent perceptions of hospital safety, or barriers to chronic disease self-management. They also have experience identifying available measures and adapting those for use in specific populations, including pilot testing and instrument refinement and validation.

Validation of Pediatric Patient-Reported Outcomes in Chronic Diseases (PEPR)

PROKids is part of a National Institutes of Health (NIH) Consortium testing several pediatric patient-reported outcome tools that are part of the Patient-Reported Outcome Measurement Information System (PROMIS). In collaboration with researchers at Children’s Hospital of Wisconsin in Milwaukee, PROKids will evaluate tools that measure pain, physical activity, stress, strength, and family relationships for children with chronic illness. In addition, the project has a special focus on understanding how environmental factors (including socioeconomic factors) at both the individual and community levels, affect children’s patient-reported outcomes. For the validation, the study will look at the measures for 510 study participants with type 1 diabetes, asthma, or sickle cell disease in both clinic and emergency department settings. Follow-up surveys will be sent every six months for three years. By validating the pediatric PROMIS measures, the Consortium will facilitate their adoption and meaningful use in research and clinical care settings, ultimately improving the treatment of chronic diseases in children.

For more information, see this NIH press release.

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