BiblioPRO: A resource for measuring health outcomes reported by patients

28 May

JORDI ALONSO PHOTO DEFJordi Alonso is the director of Epidemiology and Public Health, IMIM-Hospital del Mar Institut d’Investigacions Mèdiques of Barcelona. He was the president of AQuAS’ Scientific Committee (2006-2012)

 

The PRO-Patient Reported Outcomes allow us to actively incorporate the patient perspective in clinical decision making. PRO are measurements of health as perceived by patients and the population, including (not exclusively) symptoms, functions, the perception of health, the quality of life when related to the health services and the satisfaction with the treatments. Its incorporation into clinical and epidemiological research is consolidated. However, despite the evidence of potential benefits [Valderas JM, Alonso J & Guyatt GH, 2008], PRO is very little used in clinical practice. Real time measurements of patients’ welfare, functionality and preferences have a very significant potential to inform health care system and contribute to effective benchmarking. Since about five years ago, the National Health Service in England has promoted the routine use of PROs in certain pathologies with an additional purpose: to allow comparisons between healthcare providers, with the hope that the information provided would increase both productivity by avoiding unnecessary treatments, as well as quality, through the redesign of services or patient choice [Black N, 2013].

There are many generic PRO instruments that are applicable to a wide range of pathologies, ages and locations such as the health questionnaire set (SF-36) or the EuroQol (EQ-5D) and a lot more, still growing number of specific tools to be applied to specific diseases or distinct populations. In the last decade, a new generation of instruments has been developed starting from projects driven by the Institutes of Health in the United States called PROMIS Patient-Rerpoted Outcomes Measurement Information System. [Cella D et al, 2010] These new measurements focus not so much on the target population, they are not generic or specific, but they assess specific health domains. These domains include the physical, mental and social areas and determine specific aspects such as pain, function, sleep, fatigue, depression, anxiety, social support, etc. Starting from existing instruments, PROMIS has compiled item banks for each domain and they do it in a considerably more accurate and efficient way when compared with the historical instruments. Counting on the modern theory of item response, the researchers have developed algorithms that, through computerized administration, allow a very accurate domain measurement with very few items or questions (3-5). PROMIS’s coverage at international level is underway [Alonso J et al., 2013].

Several Spanish state groups are participating in PRO focused research. Among other collaborative initiatives, features BiblioPRO a Spanish virtual (online) library of PRO measures. Initially developed by IMIM-Institut Hospital del Mar d’Investigacions Mèdiques, it relies on CIBER funding (Centro de Investigación Biomédica en Red) in Epidemiology and Public Health and on the collaboration with researchers from various institutions such as CIBERSAM and CIBERNED, among others. This free access library aims to promote the proper use of PRO in research and clinical practice. Its newly renovated website contains details of almost 800 questionnaires (soon 1,400). BiblioPRO allows: identifying the instruments currently available in Castilian; selecting the most suitable ones for a particular purpose; and accessing questionnaires while ensuring respect for intellectual property. Their website has managed to reach a stable average of 3,500 monthly visits, the management of 500 usage sublicenses per year and have about 4,700 registered users. The BiblioPRO scientific committee has made possible two scientific national conferences (2013 and 2015) and answers researchers, advocates and patients’ inquiries about the measurement of life quality when related to health.

Sense títol

The growing number of PRO questionnaires is a challenge when it comes to choosing the right tool for each purpose. Therefore the BiblioPRO’s scientific committee has developed a tool for expert assessment of the PRO instruments’ quality (all of them, not only the Spanish versions). The tool, called EMPRO (Evaluating Measurement of Patient Related Outcomes) aims to facilitate standardized assessment of measuring outcomes as perceived by the patients through 39 items covering eight attributes: concept and measurement model, reliability, validity, sensitivity to change, interpretability, load management, alternative administration models and cultural and linguistic adaptations. EMPRO has shown good results in reliability and validity [Valderas JM et al., 2008] and is an invaluable tool for researchers who need to choose between several measurements. So far they have completed and published systematic evaluations of available PRO instruments for several pathologies: heart failure, shoulder pathology and prostate cancer [Garin O et al, 2014; S Schmidt et al., 2014]. They are making new assessments for life quality when related to oral health.

The recent year’s exponential development of this type of instruments and the expansion and improvement of its applications, through initiatives such as the PRO extension of the CONSORT guide for clinical trials and the FDA recommendations, will undoubtedly increase its significance for patient’s health care and health policies. Therefore, BiblioPRO is a high added value resource available to the research community aimed at promoting and improving the measurement of outcomes as perceived by patients.

References

  • Valderas JM, Alonso J, Guyatt GH. Measuring Patient-Reported Outcomes: Moving from Clinical Trials to Clinical Practice. Med J Aust 2008; 189: 93-4.
  • Black N. Patient Reported Outcome Measures Could Help Transform Healthcare. BMJ 2013; 346: 19-21.
  • Cella D, Riley A, Stone A, Rothrock N, Reeve B, Yount S, et al. The Patient-Reported Outcomes Measurement Information System (PRO MIS) developed and tested its first wave of adult self-reported health outcome item banks. J Clin Epidemiol 2010 ; 63: 1179-94.
  • Alonso J, Bartlett SJ, Rose M, Aaronson NK, Chaplin JE, Efficace F, et al. The Case for an International Patient-Reported Outcomes Measurement Information System (PROMIS(R)) Initiative. Health Qual Life Outcomes 2013; 11(1):210-4.
  • Valderas JM, Ferrer M, Mendivil J, Garin O, Rajmil L, Herdman M et al. Development of EMPRO: a tool for the standardized assessment of patient reported outcome measures. Value Health 2008; 11(4): 700-8.
  • Garin O, Herdman M, Vilagut G, et al. Assessing Health-Related Quality of Life in Patients with Heart Failure: a Systematic, Standardized Comparison of Available Measures. Heart Fail Rev 2014; 19(3): 359-67.
  • Schmidt S, Garin O, Pardo Y, et al. Assessing Quality of Life in Patients with Prostate Cancer: a Systematic and Standardized Comparison of Available Instruments. >Qual Life Res 2014; 23(8): 2169-2181.

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