Patient Reported Outcome Indices for Multiple Sclerosis

The Patient Reported Outcome Indices for Multiple Sclerosis (PRIMUS) is a disease specific patient-reported outcome questionnaire which measures the quality of life (QoL) of patients with multiple sclerosis.[1]

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.[2]

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.[1]

The measure has three scales: quality of life, symptoms and activity limitations, which are designed to be used together or as standalone measures.[2] The QoL and symptom scales are based on simple statements with dichotomous 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.[3]

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,[3] Australian and New Zealand English and US Spanish.[4] This has allowed researchers to conduct studies for specific populations, such as Spain[5] and Europe.[6]

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[7][8][9] and rivastigmine.[10]

References

  1. ^ a b Doward, LC; McKenna, S.P.; Meads, D.M.; Twiss, J; Eckert, BJ (2009). "The development of patient-reported outcome indices for multiple sclerosis (PRIMUS)". Multiple Sclerosis Journal. 15 (9): 1092–1102. doi:10.1177/1352458509106513. PMID 19556315. S2CID 7459469.
  2. ^ a b Twiss, James; Doward, Lynda C.; McKenna, Stephen P.; Eckert, Benjamin (2010). "Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS)". Health and Quality of Life Outcomes. 8 (117): 117. doi:10.1186/1477-7525-8-117. PMC 2964544. PMID 20937112.
  3. ^ a b McKenna, Stephen P.; Doward, Lynda C.; Twiss, James; Hagell, Peter; Oprandi, Nadia C.; Fisk, John; Grand'Maison, Francois; Bhan, Virender; Arbizu, Txomin; Brassat, David; Kohlmann, Thomas; Meads, David M.; Eckert, Benjamin J. (December 2010). "International Development of the Patient-Reported Outcome Indices for Multiple Sclerosis (PRIMUS)". Value in Health. 13 (8): 946–951. doi:10.1111/j.1524-4733.2010.00767.x. PMID 20667058.
  4. ^ "Measures Database". Galen-Research.com. Galen Research. Retrieved 8 October 2013.
  5. ^ Hernandez, M.A.; Mora, S. (2013). "Use of the PRIMUS scale to assess quality of life in a Spanish population of multiple sclerosis patients". Neurologia. 28 (6): 340–347. doi:10.1016/j.nrleng.2012.06.003. PMID 23067780. Retrieved 8 October 2013.
  6. ^ Karampampa, Korinna; Gustavsson, Anders; Miltenburger, Carolin; Eckert, Benjamin (2012). "Treatment experience, burden and unmet needs (TRIBUNE) in MS study: results from five European countries". Multiple Sclerosis. 18 (2): 7–15. doi:10.1177/1352458512441566. PMID 22623122. S2CID 36736082.
  7. ^ Ziemssen, T.; Meergans, M.; Vollmar, P.; Kempcke, R; Tracik, F.; van Lokven, T. (October 2012). "Study design and first interim results of a registry study to establish long-term safety and pharmaco-economic data on fingolimod (Gilenya®) in multiple sclerosis patients in Germany (PANGAEA)". Multiple Sclerosis. 18 (4): 222. doi:10.1177/1352458512459019. S2CID 208625075.
  8. ^ T., van Lokven; Kempcke, R.; Ziemssen, T.; Meergans, M. (2011-10-20). "Study design of a non-interventional registry study to establish long-term safety and pharmaco-economic data on fingolimod (Gilenya®) in multiple sclerosis patients (PANGAEA)". 5th Joint triennial congress of the European and Americas Committees for Treatment and Research in Multiple Sclerosis. Amsterdam, the Netherlands. Archived from the original on 2013-11-08. Retrieved September 10, 2013.
  9. ^ Cascione, Mark; Wynn, Daniel; Agashivala, Neetu; McCague, Kevin; Pestreich, Linda; Schofield, Lesley; Kim, Edward; Barbato, Luigi (2013). "Patient-Reported Treatment Satisfaction, Reasons for Therapy Change, and Health-Related Quality of Life at Baseline from the Trial To Evaluate Patient OutComes, Safety and Tolerability of Fingolimod". Neurology. 80 (1). Retrieved 9 October 2013.
  10. ^ Maurer, M; Ortler, S; Baier, M; Meergans, M; Scherer, P; Hofmann, WE; Tracik, F. (2012-10-15). "Randomised multicentre trial on safety and efficacy of rivastigmine in cognitively impaired multiple sclerosis patients". Multiple Sclerosis. 19 (5): 631–638. doi:10.1177/1352458512463481. PMID 23069874. S2CID 6838286.