Our results show that there is general agreement regarding commonly perceived barriers to T2T implementation in clinical practice, and these include reliable elicitation of patient preferences, use and interpretation of disease activity measures, and challenges related to telehealth. Moreover, gaps in knowledge, skills, and action as related to assessment of health literacy, the correct use of PRO measures, and the conduct of standardized joint counts seem to underlie some of the difficulties in implementing T2T. Of note, the least used tools to assess disease activity are those involving active patient participation, as opposed to those primarily employed by rheumatologists. Finally, self-reflection questionnaires, patient education materials, and treatment consideration checklists seem to be seldom utilized by Brazilian rheumatologists. Of note, the current results are qualitatively similar to those from the worldwide experience within the EVEREST initiative [17]. Possible exceptions to this are nominally lower frequencies of use among Brazilian rheumatologists than worldwide of apps/tools to monitor disease activity and of disease activity calculators (among tasks described in Fig. 2), as well as of case scenarios to improve decision-making (among tools described in Fig. 3). On the other hand, among the perceived barriers described in Table 3, although the overall distribution was similar between Brazilian and worldwide rheumatologists, the former rated many of them as serious more frequently than the latter.
Despite the available evidence that a T2T strategy can improve symptoms and decrease long-term disease progression, many patients living with RA do not achieve guideline-recommended T2T goals [8,9,10, 18, 19], something that can lead to increased morbidity and mortality [12, 20]. In the US, for example, routine use of quantitative measurement for patients with RA remains suboptimal despite evidence of increase over time [19]. In a study from Brazil involving 1115 patients with RA from 11 centers, with a median disease duration of over 10 years, it was found that nearly half of the patients failed to achieve T2T goals and 55.2% developed erosive disease. Other notable findings from Brazil were the frequent use of corticosteroids and a delay in initiating disease-modifying anti-rheumatic drugs (DMARDs) [10]. It should be noted that this was a cohort with established disease, therefore indicating the consequences of diagnostic and therapeutic constraints which may be improved by a T2T strategy. Qualitatively similar findings to those from Brazil have been reported in several other countries [8, 18, 21,22,23].
Effective implementation of a T2T strategy in routine clinical practice relies on a number of factors including an understanding and willingness to adopt the principles of T2T by healthcare professionals and patients [12, 24]. Coupled with the availability of resources, this commitment may depend on proper awareness and education of those players. There is evidence that educational strategies can improve physician knowledge of and agreement with the T2T recommendations in RA [25]. Likewise, patient education is paramount to support change in RA treatment when recommended by a rheumatologist [26]. Nevertheless, one of the conclusions from the first phase of EVEREST was that although interventions designed to improve T2T implementation are available, there is as yet limited evidence for their direct impact toward that goal [13]. Moreover, education strategies and tools should be designed based on perceived gaps reported by healthcare professionals and patients. Likewise, the effectiveness and feasibility of these strategies likely vary according to regional features and healthcare settings [13]. Therefore, initiatives such as the one embodied in EVEREST have the potential to considerably improve T2T implementation in a manner that takes into account regional needs. That said, even reported adherence to guideline recommendations does not always equate to actual implementation of such recommendations, a reason why assessment of the effectiveness constitutes the planned third phase of EVEREST [27].
In the present study, it becomes evident that even experienced rheumatologists who possess self-reported knowledge and practical experience with applying the T2T strategy face various obstacles when attempting to effectively integrate this strategy into their clinical practice. One of these barriers relates to managing contradictory assessments between PRO measures and composite measures—a well-recognized concern within the rheumatology community [28]. This concern may be attributed, in part, to the frequent disparity between patient assessments and those conducted by physicians, a phenomenon documented in several studies. Notably, patients often assign higher scores than physicians in these assessments [28,29,30]. A related issue pertains to potential contradictions between the subjective and the objective components of composite measures assessed by physicians [31]. Numerous instances arise where different aspects of disease activity evaluation hold distinct significance for patients and for medical professionals. Pain and quality of life, for instance, emerge in some studies as more pertinent to patients, while objective measures assume greater relevance for physicians [32]. In a similar vein, the utilization of visual analogue scales could contribute to this disparity. Differences in scale presentation, anchoring, and verbal descriptors hold substantial potential to influence the resulting assessments [28, 33]. The research highlighting different aspects of disease activity for patients and physicians should be interpreted with caution, because some of the PROs capture symptoms that result from non-inflammatory elements of RA, which would not warrant treatment escalation. In other words, in some cases there may be discrepant perceptions on the part of patients or physicians about why a therapeutic target is not reached: the rheumatologist will not escalate treatment if the measured disease activity and PRO are not attributable to active inflammation, and this may contradict the patient’s expectation if they understand that all symptoms indicate disease activity and can thus be mitigated by treatment escalation. Here as always, patient education is paramount in aligning realistic expectations. Finally, it should be noted that nearly half of the rheumatologists assessed herein are concerned with insufficient financial resources to allow seeing patients frequently enough to meet T2T recommendations and with the fact that medical charts are not adapted to document PROs and measures of disease activity. With regard to the latter concern, there is evidence that the documentation of disease activity can be considerably improved by explicit attention to capturing the required information in medical records [34].
Despite the existence of barriers, Brazilian prospective studies demonstrate that the implementation of the T2T strategy for treating RA was not only feasible but also effective within the public health system. The first published cohort study in Brazil involving 241 consecutive RA patients, who were followed for 14 (±5.3) months as part of a T2T intervention, yielded promising results [35]. By the end of the follow-up period, implementation of a T2T approach led to a significantly higher proportion of patients to achieve remission according to Disease Activity Score—28 joints (DAS28; 11.6% vs. 18.6%; p < 0.001) and Clinical Disease Activity Index (CDAI; 8.1% vs. 13.6%; p < 0.001) assessments, along with low disease activity based on DAS28 (9.8% vs. 13.0%; p < 0.001) and CDAI (23.9% vs. 28.4%; p < 0.001) criteria. The incorporation of the T2T strategy into the management of RA was demonstrated to be both feasible and effective in this population, even in the context of a poor socioeconomic scenario. Furthermore, the integration of innovative therapeutic options within the framework of the T2T strategy was associated with additional improvements in disease activity and physical function, particularly for patients facing challenging disease control [35].
Importantly, the participants of the current survey reported knowledge, skill or effective action gaps related to assessing health literacy and to using tools that enlist active patient participation and patient-education resources, as well as concerns with patient adherence. On the other hand, only approximately 10% of invited rheumatologists participated in the current survey, and this is a limitation of the study. In a study conducted in Brazil, adequate health literacy was negatively associated with higher Health Assessment Questionnaire scores, whereas high activation levels were negatively associated with moderate to severe functional limitation [36]. Although concerns with patient adherence and health literacy seem to be ubiquitous in the management of patients with RA [21, 37,38,39], EVEREST and similar initiatives have the potential to address these and other important issues that aim at aligning healthcare providers and patients when it comes to treatment goals and understanding [38, 40]. Even though its recent use was in great part due to the coronavirus 19 pandemic, telehealth in general has great potential to enhance implementation of T2T in RA [41, 42]. For this purpose, the validation of tools for remote patient monitoring is crucial. Recently, Lineburger et al. conducted an evaluation of the cross-cultural and clinical validation of the Multidimensional Health Assessment Questionnaire/Routine Assessment of Patient Index Data 3 (MDHAQ/RAPID3) instrument in electronic format for a Brazilian population of patients with RA. The tool exhibited a 92% acceptance rate among participants. The utilization of MDHAQ/RAPID3, in conjunction with traditional clinical measures, can facilitate remote follow-up according to T2T approach, with performance comparable to the gold standard DAS28. The authors concluded that these results establish MDHAQ/RAPID3 as a viable tool for Brazilian patients with RA within the current telehealth context [43]. On the other hand, several challenges remain to effective and widespread use of telehealth in this setting, and studies such as the current one can help tailor strategies depending on local needs [41].
It should be noted that the current report presents the expert-opinion elicitation component of the first phase of EVEREST as related to Brazil. The information collected in this first phase has been used to implement the second phase, which aims to design evidence-based tools to address the identified barriers and challenges in the implementation of T2T in RA. These insights are poised to guide forthcoming stages of the EVEREST initiative both within the country and on a global scale. Such initiatives will include resources focused on three main pillars: (1) rheumatologists’ self-reflection on the use of T2T in their clinical practice; (2) shared decision-making; and (3) optimization of T2T implementation through telehealth. The third phase of EVEREST will consist of the actual use of these tools, the assessment of their contribution to T2T implementation, and their refinement according to findings.
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