Priorities for High-quality Care in Rheumatoid Arthritis: Results of Patient, Health Professional, and Policy Maker Perspectives

RESULTS

Participants. We conducted 3 focus groups with 6–10 participants each, 13 1:1 interviews, and 6 smaller focus groups of 2–4 people. Focus groups lasted 90–120 minutes and interviews lasted 45–90 minutes. Table 1 outlines the participant types and regional distributions. In total, 54 people participated in either a focus group or interview. Three separate face-to-face focus groups were conducted including AHP at a rheumatology clinic (registered nurses and a physiotherapist, n = 10), AHP (registered nurses, physiotherapists, and a pharmacist) at the CRA Annual Scientific Meeting (n = 9), and one with patients at the same meeting (n = 6). In addition, 30 people participated in interviews (2 in 1:1 face-to-face interviews and the rest by telephone) and smaller focus groups of 2–4 people by teleconference (8 rheumatologists, 7 patients, 4 clinic managers, 9 healthcare leaders/policy makers, and 2 allied healthcare professionals).

Perspectives on RA quality of care informing a vision and strategic objectives. Seven main themes were derived from participants’ responses that are important to consider when developing a quality of RA care framework. These included (1) access to care, (2) evidence-informed, high-quality, patient-centered care for patients with RA including care for other coexisting comorbidities, (3) patient education and access to information, (4) multidisciplinary care, (5) improving patient outcomes, (6) the patient experience of care, and (7) equity in the delivery of healthcare. Overall results are summarized in Table 2.

The main themes were used to develop a vision for RA care: “Ensuring patient-centered, high-quality care for people living with rheumatoid arthritis.” The 7 main themes, discussed in detail below with supporting quotations on Table 3, Table 4, and Table 5, were used to develop strategic objectives for quality improvement (Figure 1).

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Figure 1.

Vision statement and strategic objectives for quality improvement for RA. RA: rheumatoid arthritis.

Access. Access to rheumatology care was of primary importance to all participant types, with many highlighting the importance of early diagnosis and early disease management in improving patient outcomes. A number of HCP discussed the CRA’s wait time benchmarks for rheumatology consultation, which suggest a maximum time between referral and rheumatologist appointment²¹. A number of participants highlighted that the wait time measures were suboptimal because they do not capture the time from patient symptom onset. Further, HCP expressed concern that the wait time benchmarks were not easily achievable due to the large volume of referrals received in their centers. A frequently cited reason for prolonged wait times was the mismatch between “supply and demand” (IG6, IG10). This mismatch was perceived to be more prevalent in rural areas. Use of alternative models of care were cited as potential resources for increasing provider capacity, thereby reducing wait time.

A lack of expertise among some referring physicians was seen as contributing to delays in access, as were poor quality of referrals wherein information was not adequate for appropriate triage. Central access and triage models were described by some HCP as an approach of improving access, with some models including AHP with advanced musculoskeletal training assisting with triage. However, challenges in incentivizing and funding new models of care in some provinces were described as barriers to uptake of this approach. Patients also reported the ongoing need for timely access to their specialist team (e.g., to manage disease flares).

Evidence-informed, high-quality, patient-centered care. Concepts central to the theme of evidence-informed, high-quality, patient-centered care included measuring RA-related outcomes (e.g., disease activity and functional status) and addressing comorbidities. However, the role of rheumatologists in the screening and/or management of comorbidities was controversial. Some HCP described specialized risk clinical and online tools they used to help screen and manage comorbidities on a systematic basis, while acknowledging this could lead to a “longer visit” (IG1), thus affecting provider availability for others. Other HCP felt strongly that management of comorbidities reduced time spent managing issues specific to a rheumatologist’s scope of practice. At a minimum, some HCP acknowledged the need to help educate primary care providers and patients about the need for screening for comorbid conditions such as heart disease and osteoporosis. Patients and HCP also viewed access to medications as important, including wait time from date of decision to escalate therapy to start of advanced therapy and between switches in advanced therapies, as well as time from diagnosis to the first disease-modifying antirheumatic drug (DMARD; Table 4). Additional gaps identified by patients and HCP were in addressing mental health issues, as well as lifestyle, exercise, and dietary changes.

Information and educational materials. Access to information and educational materials was cited as an element of high-quality care, with patients emphasizing the need to receive the right amount of information at the right time. For example, having a list of where to access high-quality information about arthritis was suggested as a strategy to improve patient care.

Patients also described the high volume of information available (which was at times overwhelming, especially early after diagnosis) and suggested ways to better navigate the information. The concept of a “buddy system” (Patient FG1) or peer navigation to facilitate information gathering and/or the health system itself was also discussed by patients.

HCP also noted that at early diagnosis a more coordinated approach could be offered for patient education. In 1 focus group, AHP suggested that education could even begin while patients are awaiting their initial appointment.

The use of alternative models of care was also discussed, including, but not limited to, nursing models to assist with delivering educational materials and ensuring patients were comfortable with the medical plan. Patients suggested that more innovative resources for education could include online materials and videos. HCP also noted a need to develop resources that were culturally and linguistically appropriate.

Multidisciplinary care. Multidisciplinary and team-based care were highlighted as important to high-quality RA care given the complex needs of patients with RA. Unfortunately, access to multidisciplinary care was highlighted as lacking in many centers and described as an important area for resource development. Additionally, beyond access to physiotherapists and occupational therapists for management of disease, HCP discussed the need for access to social workers to help patients navigate financial concerns relating to access to medications, vocational counselling, and assistance with income support programs. In addition to lack of funding for AHP, human resource shortages of AHP with expertise in inflammatory arthritis was also noted as a deficit. In contrast, the Advanced Clinician Practitioner in Arthritis Care program²² was cited as an important innovation in the training of extended role practitioners in arthritis care, which is necessary for expanding and optimizing the rheumatology workforce through alternative models of care.

Improving patient-reported outcomes. A variety of outcomes including disease activity, pain, fatigue, and functional status were discussed by HCP and patients as important to monitor and serve as guides in disease management. Challenges with measuring and monitoring these outcomes were discussed, given different availabilities of electronic health records and challenges with standardized collection of patient measures during routine clinical care. HCP in particular also emphasized that time to remission or lower disease activity are important concepts when considering the measurement of patient outcomes.

Patient experience and satisfaction with care. Patient experience of the care transaction and relationship with their provider was very important to patients and HCP when they were defining high quality of care. While this concept was infrequently measured using satisfaction or experience surveys, key defining features included emotional support and understanding and acknowledging who the patient was beyond their disease and the effect the disease had on their lives (Table 5). Central to the patient experience was approaching patient care with a more holistic approach, having trust in their physician and appropriate communication, and a sense of feeling “heard” (IG8).

Equity. Equity in the provision of rheumatology services emerged as an overarching theme. Participants noted gaps in geographic access to care, in particular, access for rural and remote areas, as well as for Indigenous populations. Challenges were also identified in providing linguistically and culturally appropriate and safe care to Indigenous and other population groups.

The stratification of measurement based on region or socioeconomic status was suggested by a policy maker as a means of measuring and monitoring equity in healthcare delivery. A number of potential solutions for models of care delivery to rural and remote regions were suggested, including traveling clinics and telehealth. Potential barriers that were discussed included patient buy-in for telehealth compared to a traditional in-person clinic visit, as well as the need for well-trained individuals to conduct physical exams and facilitate appropriate care at the remote site. In contrast, travel grants to allow patients to travel for healthcare appointments at distant academic centers were not always viewed by HCP as the most effective use of healthcare resources.