In 2016 we began the Research In Focus series, highlighting new and interesting findings from NIDILRR-funded studies, presented in a reader-friendly format. As a follow-up, we offer our occasional series Research In Brief, where we break down some of the terms you might find in peer-reviewed studies.
In this month’s Research in Brief, we explore terms related to patient-reported outcome measures. These are standardized measures showing how well a person functions in different areas, their quality of life, or how much they are participating in their community. Patient-reported means that patients provide information about their condition or experience, often through a questionnaire, versus being observed by a clinician or researcher. Researchers may use these outcome measures to understand the impact of an illness, injury, or disability; to compare different groups of people; or to find out whether a person’s outcomes improve after receiving some kind of treatment or program. Outcome measures commonly used in NIDILRR-funded studies include:
- Quality-of-life: This is usually measured with a questionnaire in which participants rate how well their life is going overall. Quality-of-life can be rated in general, or in specific areas. For example, participants may be asked about their health-related quality of life, or how they would rate their physical and mental health. Participants may also be asked about their level of happiness or life satisfaction.
- Activities of daily living (ADLs): Participants may be asked how well they are able to perform everyday activities like bathing, dressing, and feeding themselves, or they may be asked how much assistance they require to complete these activities. Some questionnaires also ask about “instrumental activities of daily living” (IADLs). These are activities like cooking, shopping, and household chores.
- Community participation: Participants may be asked about their level of participation in activities like work or school, volunteering, social events, religious observances, exercising, or other leisure activities.
To learn more about how these measures have been used in NIDILRR-funded studies, check out these Research In Focus articles:
- Recovery and Independence Are Common After Severe TBI
- A Group Teleconference Program May Help People Aging with Multiple Sclerosis Build Resilience
- For People with Psychiatric Disabilities, Neighborhood Factors May Affect Acceptance and Community Involvement
To learn more about the tools used to measure quality of life, activity, and community participation, visit the RehabMeasures database. You can search by assessment type (including patient-reported outcomes), area of assessment, population, body part, and cost.