| 1. Initial access to rheumatology care |
Delay in recognition of RA and the referral of patients to rheumatology care team by family doctors |
All participants sought first help with joint pain from their primary care providers, which was a challenging experience for some of them For one participant, it took 2 y and multiple visits to her family doctor to get diagnosed, as her doctor did not believe she was in as much pain as she claimed. After she finally changed doctors, she was referred to a rheumatologist and diagnosed with RA within a week The family doctor of a young mother who could not pick up her baby due to pain suggested her pain might be related to her being depressed Stressing the importance of early diagnosis, one interviewee suggested family doctors should be more decisive in figuring out what is wrong, avoiding a “by guess and by golly” approach While positive rheumatoid factor test results expedited referral to a rheumatologist, negative results (that in the end turned out to be a false negative) delayed referral. After 4 mo of pain, one participant with a negative test finally went to the emergency department where she was admitted to hospital and diagnosed with RA
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| Long waiting time for initial appointment |
For one participant, it took 10 mo to get an appointment with the rheumatologist after her family doctor's referral Knowing it can take time to get a rheumatologist appointment, some patients’ family doctors started them on RA medications, for example a low dose of methotrexate. While the resulting pain control was a great relief, for some patients this led to further diagnosis delays since rheumatologists had to wait for the medication to clear their systems
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| Positive experience with the initial access to rheumatology care |
One participant described her experience of getting diagnosed as “a positively deviant case.” Participant's symptoms developed suddenly with painful swelling in most joints. She went to her family doctor's clinic, was sent for blood work and x‐rays right away and started on medication to manage the inflammation and pain while waiting for results. The test results indicated inflammation, and her family doctor got a telephone consult with a rheumatologist. This was on a Friday. The rheumatologist said she would see her Monday morning and suggested that if she could stand the pain over the weekend, she not start on steroids, which would mask her symptoms, as she and her doctor had planned. The participant agreed to this. On Monday, she was examined by a rheumatologist and diagnosed with RA. On Tuesday, she attended a class on RA medications taught by a pharmacist, and by Wednesday, the swelling and pain were under control. By Thursday, she had a follow‐up education session with the clinic nurse and started her medications. Since then, she has been followed regularly by both her family doctor and her rheumatologist and has good access to clinic staff if questions concerning treatment arise
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| Suggestions for improving patients’ experience with the initial access to rheumatology care |
Participants thought that awareness of family doctors of RA could be higher Participants believed that increased awareness of family doctors of RA would facilitate earlier referral to rheumatologists During the reflection phase, the participant, who had a positive experience in the initial access to rheumatology care, thought this “positively deviant experience” happened for a number of reasons. First, she recognized something fairly significant was happening to her, and when symptoms persisted, she made an appointment at her family practice clinic. Second, her family doctor managed her care well—she had been his patient for a long time and knew she “didn't come there lightly.” Third, on the follow‐up appointment about her first blood test results her doctor phoned the rheumatologist on call and together they started to figure out what to do next. In addition, as a patient she is comfortable in navigating the health‐care system, is not afraid to ask questions and is a strong believer in involving others in care decisions
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| 2. On‐going access to rheumatology care |
Challenges in accessing rheumatologists in case of flare or problems with medications |
All participants were aware of the need for on‐going monitoring of their disease activity and medical management One participant who was on her third biologic said: “all of a sudden it was a wonder drug, and as quickly as it started to work it stopped” All participants mentioned they constantly worried that RA might flare up or medications might stop working. Patients worried that they would not be able to access the specialty clinic in case of such emergency
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| Direct contact to rheumatology care team |
Some participants reported to have direct telephone numbers or email addresses for the rheumatologists or nurses from the rheumatology team One participant thought being able to talk to a nurse practitioner is “brilliant, wonderful” as it provided patients access to the resources they need to keep their disease in control One participant had access to the pharmacist whose class she attended, describing this person as being “amazingly available,” responding to emails within hours: “I feel I have access, I don't have to wait for my 3‐month appointment to get access to the people who will answer my questions” In one situation, no one at the rheumatologist's office answered the phone so the participant had to go to emergency several times in 3 mo where she saw a rheumatologist on call
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| Suggestions for improving patients’ experience with the on‐going access to rheumatology care |
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| 3. Information about RA and resources for those living with RA |
Lack of information about RA and resources for those living with RA |
Participants reported receiving little if any information about RA when they were first diagnosed One patient described it as: “no nurse, no doctor, no physio, nobody has given me anything unless I find it myself” One participant from a remote community said she was “really in the dark” because she received no information from her rheumatologist, and there were no resources in her community Another participant described this as being left “floating in a big ocean all by myself with only a small bit of foam to stay afloat”
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Patients’ education is a professional responsibility of health‐care providers |
One participant said that all newly diagnosed patients should receive a “whole package of education materials, and proper websites.” She believed that once a patient was diagnosed “a bunch of doors should start opening for you”; that patients you should be referred to physiotherapy and should be “pushed to go to certain classes” When some focus group participants mentioned had attended a medication class at one of the clinics they attended, the rest of participants started to wonder why their rheumatologists had not told them about such classes. As such, most participants concluded that RA specialists should be more aware of available resources
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Positive experience with education sessions for patients with RA |
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Need for peer support and lack of peer support programs for those living with RA |
Participants spoke of having few people to talk to about their RA and the need for peer support Participants described hiding their RA from their friends, family and coworkers because they did not want to be seen as different One participant said she told her friends that her bent finger was from a sports injury Participants shared that they often held back on developing relationships and one participant said that as the disease progresses she “shuts the world out” One person said that at one time she had been addicted to pain medications so now she would not talk to her husband about her pain as he worried she would get addicted again Those who are in the workforce did not talk about their RA with their employers and colleagues, as they did not want to be passed up for promotions or potentially lose their jobs Participants appreciated the opportunity the research gave them to meet and talk with others with similar worries
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Suggestions for improving patients’ experience with the access to information about RA and resources for those living with RA |
Participants suggested that issues in accessing information and resources could be addressed through professionals’ active engagement in patients’ education about RA; comprehensive packages of information and resources on the disease, sequence of treatments and medications for newly diagnosed patients; and peer support resources In particular, participants highlighted the need for educational opportunities available in rural and smaller communities
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| 4. Fear of the future |
Fear of unknown |
Participants worried about their future with respect to RA management, particularly, medications use Participants also worried about what would happen when they exhaust all available medications, as they knew that their current medications likely would not be effective forever One participant was told she was “almost at the end of her rope,” which she interpreted to mean there were not many other medications left for her to try For another patient, the only medication that worked was prednisone, and even though doctors caution her against long‐term side‐effects, she was reluctant to stop taking them: “sometimes I think I would just like to take the prednisone and possibly die early”
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| Biologic drugs |
Participants had a particular interest in biologics, which they considered to be the ultimate medications Some patients who were not on biologics wondered why they were not and pushed their doctors to prescribe biologics, while others hoped that they would not need to use them because of what they heard about the side‐effects
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| Suggestions for reducing patients fear of the future |
Participants wanted to be in charge of their own health Participants wanted to know and to understand the full range of medications used for RA Participants suggested that all patients should be educated on their current medications, other medications available and sequencing of those medications in order to prevent patients’ anxiety regarding their future
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| 5. Collaborative and continuous care |
Lack of collaborative and continuous care |
Study participants described many instances where communication among family doctors and rheumatology care providers was lacking, which had negative impact on participants’ health Those with more than one health problem said there should be better communication between care providers involved in their care An older patient who had a heart problem and diabetes as well as RA was followed up by a family doctor, a cardiologist, an endocrinologist and a rheumatologist. In her experience, each specialist is only willing to deal with his or her own area, rather than treat her as a complex patient with multiple comorbidities. She thought that all specialists involved in her care were good, but because they did not communicate with each other, she was “lost in the shuffle”
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| Suggestions for improving continuity of care |
Participants concluded that patients need to be confident that their family doctors, specialists and RA professionals (rheumatologists, advanced practice nurses and pharmacists) communicate with each other Participants suggested that electronic records accessible to all their care providers could facilitate improved communication between health‐care providers and continuity of care
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