What is NIH PROMIS?
The Patient Reported Outcomes Measurement Information System (PROMIS) is a freely accessible database of highly authentic, precise, and explicit measures of patient-reported health status for physical, mental, and social well-being. It helped in the standardization of the patient-reported outcomes. It was developed by National Institute of Health (NIH) to collect and document the data regarding the patient’s health and well-being (Douglas M. Lawson, 2011). It combines the recent advances in technology and information and generates results that are qualitative, cognitive, psychological, and psychometric. The wide use of the tool involves answering health-related questions in the form of surveys. The tool is used to measure the frequency and occurrence of symptoms of pain, fatigue, physical functioning, emotional and psychological problems, and social issues. The social issues involve the effects that are derived from the social role and position of the patient. PROMIS covers a wide range of domains; from chronic diseases to the emotional aspects that may fall under the categories of the social and psychological domain.
The tool measures what the patients feel by asking a set of questions and suggest the main area of the problem. The data that has been collected is then used to suggest a more efficient therapy and intervention. On the other hand, the tool is also used as an aid by clinicians to understand the pathological conditions of the patients efficiently. One of the major benefits of the tool is that it improves and enhances the communication between the patient and the clinician by pinpointing symptoms in a more concise and clear manner.
Who can use it?
The tool provides data to the clinicians, researchers and the patients (both children and adults). It is the primary form of clinic information system that is used by the renal care community. The questionnaires are designed by comparing both the general population and diseased population (Douglas M. Lawson, 2011). With regards to inclusiveness; the tool includes all the people, regardless of their literacy, language, physical function, and the life course. PROMIS can be used by adults, children, the parents or the caretakers of the children. PROMIS is a self-report instrument that can be completed by adults of all ages and children between ages of 8-17 years. The proxy section of the tool can be answered by the parents and caretakers of children between ages of 5-17years as well.
What makes PROMIS tools unique?
The traditional methods of assessing change in patients only rely on biological outcomes such as laboratory tests and imaging results. These methods compromise the patient perspective, and many additional outcomes such as sleep quality, fatigue, anxiety, and ability to engage in daily activities of life are not properly addressed. This is where patient’s self-reports gathered through PROMIS tools come into play. These self-reports along with the biological clinical data offer robust interventional strategies surpassing the conventional clinical research activity (Broderick et al. 2013; Higginson et al. 2001).
PROMIS covers the reporting of patients with cancer, heart diseases, rheumatoid arthritis, osteoarthritis. It can be used to measure and compare the common domains and metrics across various conditions and diseases. It has robust reliability and validity; all metrics for each domain have been rigorously reviewed and tested.
The sub-domains for adults include; anger, anxiety, and depression from emotional distress. The domain of pain is further divided into; pain behavior, pain interference, and pain intensity. Other domains include fatigue, physical function, sleep disturbance, sleep-related impairment. The satisfaction domain covers the ability to participate in social roles and activities. The support domain includes; emotional support, informational support, instrumental support, companionship, social isolation. The cognition includes; applied cognition, cognitive function, applied cognition and general concerns. Global health encompasses psychosocial illness impact, alcohol use.
PROMIS instruments can be administered either by short forms or through computer adaptive testing (CAT).
Short forms contain a fixed set of items. Each domain may have 4-10 questions related in the form of a subset.
CAT(Computer adaptive testing) is more closely related to the health domain of the patients. The tool continues to present the patient with related questions and continues to calculate the scores till a standard error (SE) is reached.
Short forms and profiles can be administered on both paper and computer, but CAT can only be administered on a computer. Each area takes 1-2 minutes to be completed, and the software will automatically calculate results and show a comparison with the answers of the general population.
Selecting an Instrument
Generally, CAT and static short forms are used for assessment. The hard decision is to decide which PROMIS tool to use because each tool has been designed specifically for meeting the needs and requirements of a particular disease. Each tool answers questions regarding a subset of domains that point towards a particular problem. Before selecting an appropriate tool, it is important that questions regarding domains or a particular health function can be answered. On the basis of the questions answered, the correct tool can be selected. Three basic aspects should be considered when selecting an instrument; precision, brevity, and flexibility. In general, CAT is more precise, concise, and flexible than static short forms.
The tool is available in Spanish, Dutch, Chinese (Traditional), German, Portuguese, Finnish, Latvian, Danish, French, Hungarian, Italian, Malay, and Polish.
Scoring and interpretation
PROMIS measures are automatically scored and can be interpreted using an algorithm. The measures rely on a T-score metric in which 50 is the mean of the relevant reference, and 10 is the standard deviation of that population. So, 10 points in the scoring mean 1 standard deviation, where a score of 40 will be one standard deviation below the average score of the reference population, similarly a score of 70 will be two standard deviations higher than the average of the reference population. The main feature of the tool is that it specifies the range of answers using the normative scale or reference groups. The normative scale or the reference group is the scale where the answers from the average population are recorded for comparison. When the patient answers questions from PROMIS, the tool shows the difference between the results. This reference guide helps the users to distinguish the intensity of their symptoms.
PROMIS tools make the patient empowered; they can clarify their priorities and communicate them with their doctors. Effective discussion with the healthcare provider leads to better disease management (Fung and Hays., 2008). The conventional method of PRO collection is intricate and hindered by practical barriers such as lack of time during the medical visit or hasty assessments in the waiting rooms before appointments (Rose et al. 2009; Greenhalgh 2009). The brief, precise, and accurate nature of the PROMIS measures somehow eliminate many of these limitations. Qolty goes a step ahead by allowing you to fill the PROMIS tools irrespective of time and location directly on your smartphone.
It has been demonstrated that PROMIS measures show good construct, criterion, and content validity.
It has been proved that the PROMIS measures support responsiveness.
It supports reliability across the target constructed range, along with the test-retest reliability.
Composition of individual items
- The content has been reviewed by experts, clinicians, and end users who have measured the sound qualitative approaches.
- Cognitive interviews conducted
- Translatability review conducted
- Cultural harmonization addressed
- Literacy assessment conducted
Testing and instrument formats
- The formats present the adequacy and tested properties of the instrument.
- The efficiency and precision have been identified to be measurable.
- The parameters of the performance of the instrument have been specified.
- The burden of the respondent has been characterized.
- The issue of the comparison of different methods has been addressed.
Language translation and cultural adaptation
- The items and choices have been translated using rigorous translation processes (PROMIS, 2013)
Douglas, M. Lawson. (2011, March). PROMIS: a new tool for the clinician scientist. J Can Chiropr Assoc. 2011 Mar; 55(1): 16–19.
Joan E. Broderick, Esi Morgan DeWitt, Nan Rothrock, Paul K. Crane, Christopher B. Forrest. (2013). Advances in Patient-Reported Outcomes: The NIH PROMIS® Measures. EGEMS (Wash DC); 1(1): 1015.
Higginson IJ, Carr AJ. (2001). Measuring quality of life: Using quality of life measures in the clinical setting. BMJ;322(7297):1297-300.
Fung CH, Hays RD. (2008). Prospects and challenges in using patient-reported outcomes in clinical practice. Qual Life Res;17(10):1297–1302.
Greenhalgh J. (2009). The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res;18(1):115–123.
Rose M, Bezjak A. (2009). Logistics of Collecting Patient-Reported Outcomes (PROS) in Clinical Practice: An Overview and Practical Examples. Quality of Life Research;19(1):125–136.