Patient-reported information most valued by the rheumatologists in our study were rheumatoid arthritis-related symptoms and physical function. Objective information such as physical examination findings was important as well. They enquired on other aspects of life such as family planning, social support, relationship with their spouse, and depression. Even though these “social aspects” did not receive ranking votes, it was the topic with the greatest number of statements among the unranked topics, suggesting that quantitative assessment of this topic may also be of value for practicing rheumatologists.
The most valued among symptoms, was patient-reported joint swelling, tenderness, and morning stiffness. These symptoms can be captured by using patient-reported instrument such as RADAI, which constitutes global disease activity in the last 6 months, current disease activity in terms of swollen and tender joins, pain, duration of morning stiffness and tender joints on a list . RADAR questionnaire contains global disease activity the past 6 months, current disease activity in terms of joint tenderness and swelling, pain, duration of morning stiffness, functional class and a tender joint list and can measure above mentioned statements as well . Morning stiffness duration is also a component of the RADAI and RADAR questionnaires and there is an ongoing effort to improve measurement of stiffness by OMERACT (Outcome Measures in Rheumatology) . Other elements of symptoms such as fatigue, sleep, and physical function can be quantified using PROMIS and HAQ, respectively. Additionally, inquiring about fatigue, depression, and sleep patterns is evidence of awareness among study physicians about these coexisting conditions. There is growing literature that RA is associated with comorbidities such as depression, anxiety, fatigue, and sleep disorders [19,20,21]. These problems may not be directly related to RA but are often associated with poor clinical outcomes and increased disease activity scores . Recognition of these comorbidities with PROs can help early management and improve patient’s quality of life.
Shared decision making between the patient and physician on the treatment of rheumatoid arthritis is advocated by the clinical practice guidelines . To accomplish the goals of shared-decision making, priorities from both, patients and physicians should be met. Previous studies show that there are differences between patients and physicians in terms of perspectives and priorities in management of RA. For example, discordance is noted between patient and physician global assessment of RA disease activity in approximately one third of cases . Physicians are more likely to rate RA disease activity lower than patients, possibly because they rely more on objective measures. However, patients have a more holistic view of their health that does not excessively partition RA disease activity distinctly from other related impact on their health and consider physical function, fatigue and health related quality of life as important factors [25, 26]. PROs describe a patient’s health status from their own perspective thereby providing valuable complementary information to an assessment focused only on RA and allow physicians to assess health in domains that patients consider important so as to provide more holistic care.
Despite the utilization of PROs in the research studies and trials, their incorporation into clinical practice is hampered by multiple challenges. A survey of 439 rheumatologists in the United States showed that they were not opposed to use quantitative measurement such as PROs while assessing patients with RA, but many clinicians felt that they lacked the time and electronic tools to do so efficiently . Patient-related factors such as health literacy, psychological stress, language proficiency may impact both the collection of and the utilization of PROs in real world settings . There is also a lack of understanding by many clinicians on how to effectively use the data over time, and to interpret changes in PROs. For example, analyses comparing RA treatment changes in response to moderate or high disease activity as measured by the RAPID3 vs. the clinical disease activity index (CDAI) suggests that the a high CDAI score prompt RA treatment changes more so than RAPID3 . The lack of psychometric assessment and validation of PROs in specific population (e.g. patients with high comorbidity burdens) is another limitation. Finally, while some PROs are commonly collected, such as the Patient global assessment (PGA), patients may feel that the PROs commonly measured in RA lack some relevance while more important health domains may be neglected (e.g ability to participate in meaningful social relationships; impairment in work-related activities etc.) . Our previous work showed that patients lost interest in completing PROs if the rheumatologist did not use the provided information . Thus, in the present study, we attempted to identify the information most valued by the rheumatologists to make treatment recommendations for RA so we can further determine which PROs could be utilized to measure it. We were able to generate a list of statements that we can now put together into a repository of PROs for electronic data collection. In this way, rheumatologists could utilize this data, as it is something they value and could also motivate patients to complete PROs because their physician is likely to act on it.
We will use the results of our hypothesis-generating study to devise a quantitative assessment of a representative sample of rheumatologists to confirm their priorities expressed by the sample in our study. Additionally, assessment of their preferences on how frequently and in what form (e.g. tablet, computer, paper, embedded in the electronic health record) they would prefer to collect this data will be needed. The strengths of this study were the use of the nominal group technique to collect semi-quantitative data. Studies suggest that this technique is suited for the development of multiple perspectives on an issue, elicitation of responses without strong opinions or personalities (a limitation of qualitative research such as focus groups), and prioritizing root causes of a problem [3, 32]. This method has demonstrated validity, and considers all participants’ views equally . A high degree of agreement on responses from the different groups in our study met our research needs and re ranking was not considered [34,35,36]. No new ideas emerged towards the end of discussion, which further contributed to the strength of the data. We recruited rheumatologists nationally, which reflects clinical practices throughout the nation and not only regionally.
The study limitations were that the nominal group technique does not allow development of full discussion and therefore the attitudes and beliefs of the participants were not fully elicited. It is possible that the distribution of physicians (and their preferences) could have affected the distribution of the topics. The characteristics of physicians were not identified until they had completed the session. We did not determine if either an academic physician, a private practitioner, early career, or senior career physician made particular statements. Therefore, we could not ascertain what factors may have influenced the voted topics as it was beyond the scope of nominal group session. The hypothesis generating stage of the research also precludes the generalizability to a larger population of rheumatologists, thus it is possible that a larger sample survey could result in different priorities. We note that this was not the goal of the research, lessening this concern, and that our study forms the foundation for future work in this important area.