The rheumatoid arthritis patient global assessment: improve it or lose it! (2024)

Search for other works by this author on:

Article history

This editorial refers to “It can't be zero!’ Difficulties in completing patient global assessment in rheumatoid arthritis: a mixed methods study’, by Ricardo J. O. Ferreira et al., on pages 1137–1147.

The patient global assessment (PGA) is a self-reported measure widely used in many conditions including rheumatology [1]. It should reflect the patient’s own assessment of the impact of their condition. The apparent simplicity of this measure, a visual analogue scale ranging from 0–100 mm, makes it potentially appealing to use in daily practice. In RA, the PGA is included in all disease activity indices, making it the most important and most used patient reported tool in the categorization of a patient’s disease activity [2]. However, this use of the PGA in composite indices has been questioned as there is much heterogeneity in the way the PGA is presented to patients. The mixed methods study by Ferreira et al. [3] therefore aimed to explore the patients’ perspectives regarding the PGA and if a standardized explanation could improve its validity and reliability.

The study consisted of a dominant qualitative part, querying patients about their opinion of the PGA, and a concurrent quantitative part, where patients had to fill out different versions of the PGA twice with a 5-min intervention in between. The intervention consisted of an explanation of what information the PGA is intended to provide and how it is used by rheumatologists. From the interviews, it emerged that the PGA meant different things to different patients. Mostly it was thought to reflect pain, but also other themes such as fatigue and depression emerged. Patients were also confused about the PGA’s literacy and numeracy burdens. It was unclear to many of the subjects if 100 was good or bad, and many believed completely absent disease activity, indicated by a zero, could not be achieved. Moreover, patients were puzzled with the different time references including ‘today’ or ‘last week’. Today was perceived as easier compared with averaging out the PGA over last week. Most importantly, patients did not know how the PGA was used and the impact it could have on treatment decisions. This lack of patient education was reflected in a decrease in PGA scores after the structured explanation. Although this decrease was not statistically significant, it is notable that >80% of patients changed score and that patients qualitatively endorsed the value of a structured explanation. There is also prima facie evidence of feasibility from a time and clinic flow perspective regarding the introduction of the structured intervention given its succinctness and delivery by nursing staff.

This study clearly shows the risks of using the PGA in disease indices without a standardized explanation of what domains of the RA disease experience it is designed to capture. Patients believed it was only a global query about their health, something to open discussion with their physician. However, it could impact treatment decisions even in the setting of minimal joint inflammation as clinical recommendations increasingly emphasize steering treatment to the goal of a low cut-off for either remission or low disease activity on these disease activity scores [4]. A considerable proportion of patients, ranging even up to 40% could not achieve this ideal state of remission according to disease activity indices, solely because of the PGA [5]. Therefore, elevated PGA scores may induce the risk of overtreatment when applying a strict treat-to-target approach. Adjuvant interventions should be preferred rather than reinforcement of immunosuppressive treatment in the case of elevated PGA scores despite the absence of significant inflammation. Caution is advised for this push to remission no matter what [6] and led to a proposal of a dual approach to treating-to-target, with one approach aiming for clinical control of inflammation with immunosuppressive drugs and one aiming to improve the impact of disease and the patient’s global wellbeing with all interventions available [7].

This study does have some important limitations, including its single-center approach with a low number of patients, limiting its generalizability. This small study population, however, was highly enriched with vulnerable patients as more than three-quarters of the subjects had <9 years of formal education. Ferreira et al.’s research provides valuable insight into patient perspectives regarding the PGA and expands our understanding of the challenges this patient report outcome poses to disadvantaged patients and research subjects in Europe. Previous research in the United States has demonstrated that many research subjects with limited health literacy leave the PGA blank, provide non-numerical PGA responses, and find the PGA confusing [8, 9].

The patient attitude about the PGA detailed in Ferreira et al.’s study also raises the question about the PGA’s future in rheumatology clinical practice and trials. Patient input is crucial to help inform if this legacy instrument is to be retained alongside our modern armamentarium of rigorously validated patient reported outcomes. Several strategies to improve obtaining the PGA from vulnerable RA patients have been tested in recent years with limited success including obtaining the PGA verbally and the use of model disease states to orient patients [8, 9]. The impact of possible technological interventions such as obtaining the PGA through computers, tablets or smartphones has not been tested specifically in patients with limited health literacy. The development of language and reading grade level concordant PGA versions is another avenue of possible PGA improvement that has not yet been undertaken. This study makes a critical contribution to the literature as it is the first to explore if providing patients with standardized explanations regarding the PGA provides our patients and research subjects with the help they need to navigate this instrument.

‘It Can’t Be Zero’ and other recent research argue the PGA is confusing for patients and that ‘no one is listening’ [10]. It is imperative that we, as the rheumatology community, respect the voice of our patients. It is our obligation to provide them with instruments that allow for the accurate numerical documentation of their RA disease activity. A larger study is needed to prove conclusively that standardized instructions can rescue the PGA, but this study is a major step forward in the process of our speciality, taking heed of our patients’ feedback about this problematic patient-reported measure.

Funding: No specific funding was received from any funding bodies in the public, commercial or not-for-profit sectors to carry out the work described in this manuscript.

Disclosure statement: The authors have declared no conflicts of interest.

References

© The Author(s) 2019. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com

Comments

0 Comments

I agree to the terms and conditions. You must accept the terms and conditions.

Email alerts

Citing articles via

More from Oxford Academic