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PROMIS In Research
PROMIS provides access to both adult and child patient–reported measures of
symptoms, such as pain and fatigue, and aspects of health–related quality
of life. Each domain measure has undergone rigorous qualitative and psychometric
evaluation and refinement through studies with patients with the goal to enable
clinicians and researchers to have access to efficient, precise, valid, and responsive
indicators of a person’s health status. These measures are available for use across
a wide variety of chronic diseases and conditions and in the general population.
How to use PROMIS in Research
PROMIS measures can be used in clinical, observational, comparative effectiveness,
health services and health policy research.
- Clinical research: PROMIS data can be primary, secondary or exploratory endpoints
in clinical trials of interventions. For example, one could design a study of the
effect of drug therapy on PROMIS Pain Interference scores.
- Observational research: PROMIS measures can be predictors, mediators, moderators
or outcome variables in models designed to describe systems affected by, and affecting
health. For example, PROMIS scores collected at time one could be used to predict mortality or morbidity rates 5 years hence.
- Active study example: PROMIS as a measure of outcome in an observational study of
heart transplant patients
- Comparative effectiveness research: PROMIS measures can be used as indicators of
the effectiveness of an intervention. An example would be to compare the case–mix
adjusted PROMIS Social Functioning scores for two groups of patients defined by
two different types of treatments of the same disease.
- Active study example: Sensitivity of PROMIS measures to detect change due to therapy
for depression and sleep disorders
- Health services research: PROMIS measures can be used to compare the health outcomes
of patients treated under different healthcare delivery systems or providers. To
illustrate, patients cared for in Medical Homes could be compared to those cared
for in traditional fee–for–service on their case–mix–adjusted
PROMIS profile scores.
- Health policy research: When PROMIS measures are included in national surveys or
in a survey of a random sample of the population, casemix–adjusted scores
could be used to describe variations in health or disease burden for that population.
The Assessment Center is an online research management tool that can be used to
collect PROMIS data. The system enables researchers to create study-specific websites
for capturing participant data securely. Studies can include measures within the
Assessment Center library as well as custom instruments created or entered by the
researcher. Any PROMIS measure can be downloaded for administration on paper or
be included in an online study. Assessment Center enables customization of item
or instruments (e.g., format, randomization, skip patterns), scoring of short forms
and computerized–adaptive tests (CATs), storage of protected health information
in a separate, secure database, automated accrual reports, data export, graphing
of scores, and the ability to capture endorsement of online consent forms.