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Background: Rheumatology has witnessed a rapid advancement in drug development over the past decade. This also means that clinicians must focus more patient education to improve medication adherence. Medication adherence in rheumatological patients varies from 30-99% as per a recent systematic review [1]. Unfortunately, growing pressure on outpatient clinics reduces the time available for clinicians, compromising the quality of patient education. A single center study in the Netherlands found that medication side effects in outpatient clinics were discussed in only 52% cases which correlated with poor patient satisfaction with regards to patient education on medications [2]. In our audit we aimed to assess the quality of documentation with regards to patient education.
Objectives: 1. To assess the quality of documentation on patient education with regards to side effect profiles of disease-modifying anti-rheumatic drugs (DMARDs) and steroids prior to initiation in rheumatology outpatient clinics. 2. To assess the quality of safety netting of patients started on DMARDs and steroids.
Methods: Using the electronic health record system, we reviewed clinic letters issued between January 1, 2024, and April 30, 2024, of patients on DMARDs and steroids and focused on the specific letter issued at the time of drug initiation. We reviewed these letters to determine the age, gender and disease distribution. We then reviewed the letters for documentation of adverse effects related to the initiated medication, provision of patient information leaflets, and whether the rheumatology helpline number was communicated to the patient. We excluded patients on biologic DMARDs as these patients regularly attend a formal pre-biologic education clinic led by specialist nurses. The side-effects we looked for in the letters were based on Spc EMC [3].
Results: We analyzed clinic letters from 150 patients. After excluding those on biologic medications, the final sample included 124 patients. Nearly half (47.6%) of the clinics were consultant-led, 42.74% were led by middle-grade doctors, and 9.7% by specialist nurses. Age distribution ranged from 29 to 90 years, with a median age of 60 years; 69% were female. The most common diagnosis was rheumatoid arthritis (45%), followed by undifferentiated and seronegative inflammatory arthritis (12.9%), spondyloarthropathy (10.5%), systemic lupus erythematosus (SLE, 7.25%), other connective tissue diseases (7.25%), and vasculitis (3.2%). In two-thirds of patients (66%), there was documentation of some counselling, regarding adverse effects of medications. Approximately one-third (32%) of patients had documentation of receiving the rheumatology helpline number, and 39% had documentation of being provided a patient information leaflet. Table 1 depicts the percentage distribution of patients who received patient education regarding the medication initiated, patient information leaflets and rheumatology helpline numbers.
| Medication initiated | Frequency of patients on the medication(n) | Documentation of some/any patient (percentage of patients on the medication %) | Patient information leaflet (percentage of patients on the medication %) | Rheumatology helpline number (percentage of patients on the medication %) |
|---|---|---|---|---|
| Methotrexate | 45 | 75.56% | 60% | 40% |
| Hydroxychloroquine | 26 | 76.92% | 26.9% | 11.5% |
| Sulfasalazine | 13 | 38.46% | 53.8% | 23.1% |
| Mycophenolate mofetil | 7 | 71.43% | 28.6% | 85.7% |
| Leflunomide | 7 | 100% | 57.1% | 85.7% |
| Oral steroids | 19 | 26.32% | 0 | 26.3% |
Specialist nurse-led clinics documented sharing of rheumatology helpline in 81% of patients seen by them and issued patient information leaflets in half. 27% of consultant clinics and 26% of middle-grade clinics documented the rheumatology helpline number. Patient information leaflets were shared in 36% of consultant clinics and 34% of middle grade clinics.
Conclusion: Documentation of adverse effects of DMARDs and steroids for patients with rheumatic diseases should ideally be done for all patients, given the serious risks involved. We found that while there was some documentation of patient education in nearly two-thirds of patients, most of it was expressed as ‘general risks and benefits explained’. Patient education on specific side effects pertaining to each medication such as gastrointestinal, haematological etc was insufficiently documented. Hydroxychloroquine fared better, with counseling on the risk of ophthalmological side effects documented in 50% of cases. The quality of patient education was higher for sulfasalazine, mycophenolate mofetil and leflunomide although this could be a skewed result due to a smaller sample population. We also noted that there was suboptimal patient education and safety netting for oral steroids. Our audit found a significant lacuna in good clinical practice, primarily due to pressures on outpatient clinics and time constraints. There is room for improvement and measures such as smaller, patient-friendly drug information booklets, displaying posters in clinic waiting rooms, and educating healthcare professionals could help improve our practice in that regard.
REFERENCES: [1] Georgopoulou, S., Prothero, L. & D’Cruz, D.P. Physician–patient communication in rheumatology: a systematic review. Rheumatol Int 38, 763–775 (2018).
[2] Hegeman MC, Schoemaker-Delsing JA, Luttikholt JTM, Vonkeman HE. Patient perspectives on how to improve education on medication side effects: cross-sectional observational study at a rheumatology clinic in The Netherlands. Rheumatology International. 2021 Mar 17;41(5):973–9.
[3]
Acknowledgements: NIL.
Disclosure of Interests: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (