It is becoming more and more common to use patient-reported data in research, and health-professionals are becoming increasingly more interested in knowing how content the patients are with the health services provided. This is in line with political recitals related to user involvement in health care. Centre on patient-reported outcomes data has a national task in providing counseling and guidance on the use of PROM (Patient-Reported Outcome Measures) and PREM (Patient-Reported Experience Measures) in the medical quality registries in Norway. The Centre also assists regional hospital departments in conducting user- and patient-experience surveys.
The overall goals for the Centre for patient-reported outcomes data are:
Provide counseling on use and analyses of PROM and PREM
Assist the registries in choice of validated tools and, if needed, development of new tools
Provide an overview of use of PROM and PREM in national registries
Promote use of PROM and PREM in research and quality improvement
Arrange national and regional seminars
Convey information through our website
Coordinate work with PROM and PREM with other national processes
Facilitate computer technology solutions for data capture
We provide counseling to both new and existing registries. Norway has today 54 national medical quality registries. Of these, 26 and 13 registries are collecting PROM and PREM data, respectively. A list of all national medical quality registries (Norwegian titles) can be foundere here.
PROM and PREM in medical quality registries
To embrace changes in health that is relevant to both the patient and the
community we promote systematic collection and use of patient-reported data. Patient Reported Outcome
(PRO) is central to both research and quality
improvement. Examples are self-reported physical and mental health, quality of life, symptoms,
compliance of lifestyle and treatment advice, and
satisfaction with health services. Such data can be retrieved with specific and
validated tools (PROM- and PREM-forms).
PROM is tools (questionnaires) which measures how
the patients experience conditions related to health and illness and treatment
effects. PROM includes measures of symptoms, functions, health and quality of life.
PREM capture a person’s perception of their experience with health care or service. This may include access and ability to navigate services, involvement in decision-making, quality of communication and their confidence in the health care providers. We provide counseling on the use of PREM in collaboration with The Knowledge Centre for the Health Services. Literature on use of PREM in Norway can be found here.
These tools can also be used to identify
patients or groups who need special interventions.
Generic or disease-specific PROM tools
PROM-tools may be generic or
disease-specific. Generic tools are designed to be used in any disease population and cover a broad aspect of characteristics (constructs). Generic instruments make it possible to compare between different patient groups. In Norway, RAND-36/SF-36 and EQ-5D is the generic instruments
that have been used the most.
The disease-specific or condition-targeted tools are developed specifically to measure those outcomes that are of importance for patients with a particular medical condition, and may be more useful when the goal is to capture important aspects within a specific disease- or patient group. The disease-specific tools are therefore often more clinically relevant, and are often perceived by the target-group (patients) as more relevant than the generic questionnaires.
Another group of tools are those which measure specific domains or symptoms, such as for instance anxiety, depression or pain.
external webpage contains literature on PROM tools and use of PROM in Norwegian
medical quality registers: PROM-literature