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NORIC figur 8, 2016

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About Centre on patient-reported outcomes data

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. 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 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 and 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. A total of 54 national medical quality registries exist in Norway today. 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 found here

PROM

To embrace changes in health that is relevant to both the patients and the community we promote systematic collection and use of patient-reported data. Patient Reported Outcome (PRO) is a health outcome directly reported by the patient who experienced it. 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 instruments or tools. These data are collected via self-administered questionnaires, completed by the patients themselves, or through interviews. In certain cases, e.g. for children or in case of dementia, others (parents or next of kin) may complete the instruments on their behalf.

PROM is tools or instruments (questionnaires) which measure how the patients perceive their health and the impact that treatment have on their quality of life. PROM includes measures of symptoms, functions, health and quality of life.

Generic or disease-specific PROM instruments

PROM-tools or instruments 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 two generic forms 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.

Literature on PROM tools and use of PROM in Norwegian medical quality registers can be found here: PROM-literature

PREM

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 (Norwegian Institute of Public Health).

Literature on use of PREM in Norway can be found here: PREM-literature

Contact

Phone: + 47 55 97 58 96

E-mail: PROMsenter@ihelse.net

Who we are can be found here