Introduction

Immune-mediated inflammatory diseases, including rheumatoid arthritis (RA), psoriatic arthritis (PsA) and psoriasis (Ps), are a group of chronic and highly disabling conditions that share common inflammatory pathways [1]. They affect millions of individuals worldwide, with a prevalence of 5%–7% in the Western society [1].

Recommendations for the treatment of chronic diseases emphasise the need to work in partnership with the patient [2]. For rheumatic diseases in particular, such as RA or PsA, the assessment of disease activity, as well as therapeutic decisions, rely heavily on patient-reported outcomes in combination with the physician’s perception, in contrast to other fields of medicine in which treatment decisions are based on measurable biomarkers [3]. Patient reported outcomes are reliable measures that allow the translation of qualitative clinical impressions into quantitative data [4,5]. They have shown to be as effective as physician-reported results or clinical variables in reflecting changes in disease activity over time [6]. In the case of dermatological diseases, such as Ps, several studies and clinical practice guidelines highlight the need to include both, the objective evaluation of severity and the subjective perception of the disease impact on the patient, for disease assessment [7], which is not routinely estimated [8].

In clinical practice, patient and physician perspective regarding disease state and treatment expectations may differ. Discrepancies in the assessed health status may result in patient dissatisfaction and could negatively affect patient care, treatment compliance and disease outcomes, with the consequent cost to society [2,9].

The literature about the differences between patients and physicians’ perspectives regarding the management of their disease is heterogeneous, and the potential predictors of the discrepancy are not clear [2]. The objective of this systematic review is to describe the degree of discrepancy between patients and physicians in the management of three immune-mediated inflammatory diseases (RA, PsA and Ps), identifying the main areas of discrepancy and the possible predictor factors.

Methods

A qualitative systematic review of the literature on the existing differences between patients and physicians’ perspective in the management of RA, PsA and Ps was conducted according to PRISMA recommendations [10].

To identify relevant articles, targeted literature searches in international (Medline/PubMed, Cochrane Library, ISI Web of knowledge [ISI WOK]) and Spanish electronic databases (Medicina en Español [MEDES], Índice Bibliográfico Español en Ciencias de la Salud [IBECS]) were conducted. The search strategy was focused on the conditions of interest, the physician and patient figures, and terms related to discrepancy between them (S1 Table). Reference lists of the selected articles were hand-searched to identify additional potentially relevant publications.

The search was limited to studies published in English or Spanish, from April 1, 2008 to April 1, 2018. Studies that focused on the discrepancy between patients and physicians in the management of RA, PsA and Ps, conducted in Europe or North America (or international publications comprising European or North American populations) were included. We excluded congress abstracts, study protocols, letters to the editor and those publications reviewed in the systematic review included in our review.

After removal of duplicates, the records were screened by two independent researchers, in two levels. The first level included title or abstract screening, and the second level included full text screening. Discrepancies were reviewed by a third researcher and resolved by consensus. The included studies were graded on quality of evidence according to the Oxford Centre for Evidence-Based Medicine (OCEBM) criteria [11], where level 1 is the maximum level of evidence (e.g. systematic reviews) and level 5 is the minimum level of evidence (e.g. expert opinion). Risk of bias was measured though a Newcastle-Ottawa scale adapted for cross-sectional studies [12,13], where the maximum score is 10, and the minimum is 0, considering a low risk of bias 7 points or more, and high risk of bias 6 points or less. Risk of bias for systematic reviews was measured through ROBIS tool, which classifies the studies in high, low or unclear risk of bias [14].

General data were extracted from each publication, including country, design, disease studied, participants, and the level of evidence. The variables of discrepancy were identified in each publication (discrepancy definition, measurement tools, and results) and grouped according to the disease. Predictor factors of discrepancy (measurement tools and results) were summarized for each publication.

Results

A total of 718 titles were identified. Of them, 20 publications were relevant to the objective of the study and, therefore, were selected. An additional record from references’ review was identified, hence 21 articles were finally included in the review (Fig 1). The general characteristics of the 21 studies reviewed are summarized in Table 1. Main results (discrepancy and predictor factors) for each study are shown in Table 2, and described further (discrepancy definition, measurement tools, detailed results) in S2 Table. Excluded publications based on the selection criteria are shown in S3 Table.

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Fig 1. Study selection flowchart according to PRISMA.

https://doi.org/10.1371/journal.pone.0234705.g001

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Table 1. Characteristics of the 21 studies included in the systematic review.

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Table 2. Discrepancy and predictor factors in rheumatoid arthritis, psoriatic arthritis and psoriasis.

https://doi.org/10.1371/journal.pone.0234705.t002

Discussion

Compared to other diseases, such as diabetes or hypertension, where an objective and numerical measurement to assess disease severity and treatment response is available (hemoglobin A1c or blood pressure), the lack of a single gold standard measurement to assess disease activity in immune-mediated inflammatory diseases difficult its management, pointing out the need to consider both objective and subjective assessments [34]. Moreover, taking into account patients perspective and involving them in disease activity assessment may enhance self-management behaviour and ultimately improve health outcomes [35].

The studies reviewed show that patients and physicians focus on different aspects of the disease, resulting in different perceptions of disease severity, diverse clinical expectations or different impressions of treatment response. In immune-mediated inflammatory diseases, these discrepancies are associated with worse clinical outcomes, activity impairment, reduction in work productivity and poorer HRQoL [19,21,22,32]. Previous studies have reported that discordance is also associated with a lower likelihood of remission in patients with RA and PsA [36]; greater joint destruction and functional impairment in RA [37], and higher Disease Activity Score (DAS28) and C-Reactive Protein (CRP) after the 24 weeks of disease-modifying therapy in early RA [38]. This association between discrepancy and worse clinical outcomes has also been described in other diseases such as asthma [39].

This systematic review denotes that the literature addressing patient-physician discrepancy in RA, PsA and Ps is very heterogeneous and highlights the lack of a standardized criterion to define discrepancy, with patients and physicians’ perspectives appraised using diverse tools, and discrepancy established according to different cut-off values. This circumstance results in different degrees of discrepancy according to the criteria considered and makes it difficult to compare results between studies. In this regard, an inverse correlation between the frequency of discrepancy and the cut-off point used has been previously reported in the literature, being the discrepancy higher when the cut-off point is lower [2].

Differences among immune-mediated inflammatory diseases have been detected. Thus, the studies conducted in RA and PsA were mainly focused on the evaluation of disease activity, while studies performed in Ps were focused on treatment satisfaction and preferences, and on patient-physician relationship.

In RA, PtGA-PhGA discrepancy about disease activity assessment varied among studies, ranging from 25% to 76%. In general, it was lower in patients in remission, and greater in patients with moderate or high disease activity. Patient and physician disagreement has been previously reported [34,40–42] and, in many cases, may adversely affect therapeutic decisions [43] and the assessment of treatment response [41]. The discrepancy could be explained in part, since patients could rely more heavily on the subjective perception of pain and discomfort, and therefore discrepancy will not only reflect the disease status but also psychological distress and comorbidities [21,44]. Additionally, another study in RA concluded that physicians underestimated disease severity and treatment related adverse events and their impact on patient perceived well-being [45]. Physicians are generally more prone to use objective measures to determine treatment response and may not pay sufficient consideration to patient-reported variables [21]. Accordingly, expectations during the clinical visit also differed on the objective assessment of disease activity in RA, which was prioritized by physicians, but not by patients, although both, patients and physicians, shared the same objective: pain control [25]. Previous studies have reported that RA patients have higher expectations from their treatment than physicians, specifically in terms of pain control [46]. Finally, in relation to satisfaction with disease treatment, RA patients receiving biologics generally revealed better satisfaction about the control of the symptoms, regardless of the route of administration, while physicians consistently considered IV biological therapy to be less satisfactory. Even though the factors associated with the discrepancy in RA have not been well established [47], our results show that major factors affecting PtGA-PhGA discrepancy in disease activity assessment are TJC, SJC, fatigue and pain. The awareness of which factors contribute to physicians’ and patients’ perceptions may help to define an improved standard measurement to better assess disease activity and treatment response, and to establish an enhanced patient-physician dialogue [21,47].

In line with previous studies conducted in PsA [21], a greater PD for joint activity (31.2%) compared to skin activity (15.4%) was observed. This discrepancy was predicted mainly by fatigue and pain. At present, there is an increasing trend to rely on patient self-reported questionnaires of disease activity and treatment response for monitoring patient status and adjusting treatment if necessary [35]. Therefore, according to our results, as patient self-report does not agree with physician observation, to rely solely on patient self-reported joint counts may not be appropriate [48], or vice-versa, suggesting the need to use both objective and subjective measurements. Our results indicate that, contrary to RA, discrepancy was greater in patients in remission, compared with high disease activity patients.

In Ps, low discrepancies were detected related to treatment satisfaction in Ps or patient physician relationship. Patient physician relationship is key to achieve a high-quality health care, as it has been described that many doctors tend to overestimate their ability in communication and that much patient dissatisfaction and complaints are due to breakdown in the doctor-patient relationship [49]. Nonetheless, some patient-physician differences were found regarding treatment preferences, objectives, compliance or emotional burden. Accordingly, despite previous communications reporting different perceptions between psoriasis patients and their physicians with respect to disease severity, symptoms, disease control [50] or treatment goals [51], the results of this review suggest improvement in the dialogue between patient and physician.

This qualitative systematic review has several limitations. The first is related to the search strategy, as it does not include all possible databases (including Embase) and the grey literature, which might imply a incompleteness of the results. Secondly, the search was limited to studies published from 2008 onwards, as it is in the last decade, with the introduction of biological drugs, where the management and treatment of immune-mediated inflammatory diseases has experienced a major change. Similarly, it was limited to studies conducted in Europe and North America and published in English and Spanish. Thirdly, the heterogeneity of the articles included, in terms of diseases, population and methodology could represent a limitation. As a whole, there was a lack of uniformity regarding the measurement tools and thresholds established to formally assess the patient-physician discrepancy. The quality of the studies included is moderate, what is anyway inherent to the topic of the literature search. In this regard, a review considering different selection criteria could generate different conclusions. Nonetheless, the results of this systematic review will allow a better understanding of the areas and the degree of discrepancy as well as to the determinants that contribute to the discrepancy between patients and physicians. It is anticipated that a better understanding of these factors can lead to the development of better strategies for the improvement of immune-mediated inflammatory diseases management.

In conclusion, this systematic review reveals a significant patient-physician discrepancy in RA and PsA, being lower for Ps. Based on these results, the physician assessment should be complemented with a self-report from patient’s perspective, which may facilitate patients involvement in the management of their disease. This collaborative approach between patient, physician, and other health professionals can contribute to patient trust in the physician, allowing patients to express their concerns and thoughts, prioritize their problems, and discuss with the physician their expectations and goals, what could improve patient outcomes and increase adherence to treatment. Future research may help to show whether identifying the discrepancy between patients and physicians, and a better knowledge of the factors that influence it, may contribute to improve patient care and shared decision-making.

Supporting information