Ecological Validity of NIH PROMIS Scales
Over the last decade, team members have been part of the consortium working to create the NIH PROMIS® (Patient-Reported Outcomes Measurement and Information System) set of instruments. We have conducted studies to determine the ecological validity of PROMIS instruments by comparing PROMIS 7-day recall scores with daily diary data obtained from the same individuals over the same reporting periods.
Self-Report and Aging
A current project supported by the NIH National Institute on Aging examines the possibility that the age effects observed in wellbeing and health surveys may, in part, be explained by reporting factors that vary by age. We are examining this in the areas of self-reported health, pain, fatigue, and subjective wellbeing. There is preliminary data to suggest that people of different age groups use different ways of answering questions, thus yielding what looks like age differences in these domains. The true understanding of the aging process requires that the same “metric” is used across all age groups.
Subjective Wellbeing Measurement and Policy
Our team has contributed to the development of tools for the measurement of subjective wellbeing, especially those that assess everyday hedonic or experiential wellbeing. We have published substantive studies using these tools to examine how wellbeing covaries with various demographic and environmental characteristics. Center members have also participated in national and international forums on the use of wellbeing for formulating governmental policies, including OECD (Organization for Economic Cooperation and Development) regarding well-being and policy.
Time-use and Experience
Several of our studies are focused on innovative ways of collecting self-report data, including methods that ask respondents to recreate yesterday’s experiences in detail. In particular, we have been involved with the analysis of the Bureau of Labor Statistics’ American Time Use Survey, which has recently collected information about experiences and symptoms for a selection of each respondent’s set of time-use episodes. Another current project funded by the Physicians Foundation is collecting multiple reports of types of work tasks performed by physicians across a day to empirically characterize time use. We are also refining and validating the Day Reconstruction Method instruments, including short versions of the instrument that are intended for use in national surveys.
Self-Reported Symptoms in Healthcare
With the increasing use of momentary assessment come new possibilities for summarizing patients’ symptom experiences over different reporting periods. Using the detailed information provided by daily and within-day data capture methods, we will be exploring the utility of alternative ways of creating symptom scores. This holds the potential to design new outcome variables for clinical trials that will go beyond current methods that rely upon “average” or “usual” levels of symptom experience.
The explosion of use of electronic devices in patients’ lives along with the extensive implementation of the electronic medical record has opened exciting possibilities for improving clinical communication and care. Recognition of the value of patient engagement in care is generating widespread interest in capturing PROs through EHR patient portals. One of our current projects showcased by the White House Cancer Moonshot program captures daily and weekly patient reported outcomes in cancer patients undergoing chemotherapy. These data will be leveraged with mobile sensory monitoring to improve tracking of patient status between office visits and prediction of response to treatment.