Clinical registries are essential tools for ensuring quality and improving outcomes in pain medicine

Marco Baciarello; Valentina Bellini; Paolo del Rio; Umberto Maestroni; Elena Bignami

doi:10.1515/sjpain-2019-0020

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Clinical registries are essential tools for ensuring quality and improving outcomes in pain medicine

Marco Baciarello , Valentina Bellini , Paolo del Rio , Umberto Maestroni and Elena Bignami

Published/Copyright: March 23, 2019

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From the journal Scandinavian Journal of Pain Volume 19 Issue 2

Editor,

We truly appreciated the paper by Granan and coll. detailing the development of a massive registry of chronic pain patients [1]. While “big data” is becoming the latest buzzword in many context, we concur with the Authors that standardized, rigorous outcomes databases may overcome the inevitable limitations of randomized controlled trials and implement clinical auditing, which is of paramount importance in such a complex setting as chronic pain management. Having developed a similar database ourselves [2], we would like to thank the Authors for sharing some extremely insightful elements, from which we would humbly take inspiration for future version of our system.

Namely, we believe the Injustice Experience Questionnaire may help outline the extent of the societal impact of chronic pain, which is poised to be as important in society itself as it is in healthcare [3]. The IEQ could, however, turn out to be a double-edged sword, as it is conceivable that some patients might project their anger and frustration onto the subjects of the questionnaire, resulting in skewed results. What’s worse, malingering patients might exaggerate their responses for secondary gains and/or legal action (44.5% of the patients in the registry are applying for welfare benefits or in litigation). We wonder how the Authors are treating the results of the IEQ (e.g. correlating them with psychometric variables) and we look forward to the results of the analyses in their forthcoming paper.

We would also like to ask the Authors what software platform the registry runs on. We have chosen the REDCap platform because of the excellent security profile, modular structure and granular access management; it is also free to use for non-commercial entities [4]. Still, REDCap may not fit all needs and settings, so it might be useful to know of possible alternatives. Finally, we would like to propose an additional form of patient-reported outcome variables, which we tentatively named “patient-specific impression of change” (PSIG) in our database, whereby participants choose the three activities which are most negatively impacted by their chronic pain condition, entered as free text. In follow-up visits, amongst several questions, patients are asked to evaluate their impression of change with respect to those activities, defined by the same text they entered at the first visit. Fig. 1 exemplifies data from a fictitious patients, whose initials are JB.

Fig. 1:

A screenshot from the REDLeader database (see reference [2]) illustrating how patient-specific impression of change is reported by end-users of the registry. The data come from a fictitious patient whose initials are J.B.

While not yet scientifically validated, our hypothesis is that PSIG may significantly correlate with overall quality of life and classic global impression of change, and that it may be simpler for patients to report as compared to longer questionnaires. Patient compliance (which is already very good in the data by Granan et al.) might increase in the case of on-the-go measurements taken outside of clinic appointments, perhaps via mobile devices. Additionally, the PSIG approach might reinforce the healthcare alliance between patients and pain physicians, by acting for both parties as an ever-present reminder of the initial treatment goals. We look forward to being able to demonstrate our hypotheses, and in the mean time we thank Granan and coll. for their contribution.

Corresponding author: Marco Baciarello, MD, Assistant Professor, Anesthesiology, Critical Care and Pain Medicine Unit, Department of Medicine and Surgery, University of Parma, Viale Gramsci, 14, 43126 Parma, Italy, Phone: +39-328-038-7722

Research funding: Authors state no funding involved.
Conflict of interest: Authors state no conflict of interest.

References

[1] Granan LP, Reme SE, Jacobsen HB, Stubhaug A, Ljoså TM. The Oslo University Hospital Pain Registry: development of a digital chronic pain registry and baseline data from 1,712 patients. Scand J Pain 2019;19:361–9.10.1515/sjpain-2017-0160Search in Google Scholar PubMed

[2] Baciarello M, Montella S, Andrei G, Ceresini MG, Domaneschi C, Salis E, Longobardi L, Valente A. International Neuromodulation Society’s 13th World Congress Neuromodulation: Technology Changing Lives Edinburgh, Scotland, United Kingdom May 27–June 1, 2017. Neuromodulation 2017;20:e336–783.10.1111/ner.12647Search in Google Scholar

[3] van Hecke O, Torrance N, Smith BH. Chronic pain epidemiology and its clinical relevance. Br J Anaesth 2013;111:13–8.10.1093/bja/aet123Search in Google Scholar PubMed

[4] Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap) – a metadata–driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009;42:377–81.10.1016/j.jbi.2008.08.010Search in Google Scholar PubMed PubMed Central

Received: 2019-02-02

Accepted: 2019-03-04

Published Online: 2019-03-23

Published in Print: 2019-04-24

Articles in the same Issue

https://doi.org/10.1515/sjpain-2019-0020