The Patient Reported Outcome Indices for Multiple Sclerosis (PRIMUS) is a disease specific patient-reported outcome

questionnaire A questionnaire is a research instrument that consists of a set of questions (or other types of prompts) for the purpose of gathering information from respondents through survey or statistical study. A research questionnaire is typically a mix of ...

which measures the

quality of life Quality of life (QOL) is defined by the World Health Organization as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards ...

(QoL) of patients with

multiple sclerosis Multiple sclerosis (MS) is an autoimmune disease resulting in damage to myelinthe insulating covers of nerve cellsin the brain and spinal cord. As a demyelinating disease, MS disrupts the nervous system's ability to Action potential, transmit ...

. The measure contains an assessment of quality of life, activity limitations and symptoms. A higher score on any or all of these scales indicates a lower quality of life due to the disease.

History and properties

First published in 2009 by Galen Research and funded by Novartis Pharmaceuticals, the PRIMUS was developed in order to provide a more holistic view of the impact of MS on a patient. The measure has three scales: quality of life, symptoms and activity limitations, which are designed to be used together or as standalone measures. The QoL and symptom scales are based on simple statements with

dichotomous A dichotomy () is a partition of a set, partition of a whole (or a set) into two parts (subsets). In other words, this couple of parts must be * jointly exhaustive: everything must belong to one part or the other, and * mutually exclusive: nothi ...

response options. Each scale has a total score which ranges from 0 to 22. The activity scale is based on 15 statements describing tasks. Patients are asked to rate their ability to perform these tasks on a scale from 1 to 3. The total score of the activities section ranges from 0 to 30.

International use

Since the development of the PRIMUS, it has been translated into several languages including Canadian English and French, French, German, Italian, Spanish, Swedish, US English, Australian and New Zealand English and US Spanish. This has allowed researchers to conduct studies for specific populations, such as Spain and Europe.

Clinical studies

The PRIMUS has been utilized in clinical trials which assess the efficacy of a treatment or medication. If a patient's score on the PRIMUS changes after a trial has taken place, it is inferred that the trial has had an effect on the patient's quality of life. PRIMUS has been used to assess the efficacy of fingolimod and rivastigmine.

References

{{reflist Multiple sclerosis Quality of life 2009 introductions