Background The internal medicine and rheumatology departments of our hospital receive patients with autoimmune diseases whose firstline treatment is long term corticotherapy, responsible for many adverse events (AE).
Purpose We conducted a survey in internal medicine and rheumatology departments to assess patients’ needs and expectations concerning therapeutic education with a view to creating an adapted therapeutic education programme (TEP) about long term corticotherapy.
Material and methods Our survey has conducted in patients receiving long term oral corticotherapy (≥7.5 mg/day for ≥3 months), hospitalised or followed in internal medicine or rheumatology departments of our hospital. We interviewed patients, assessing their knowledge (by creation of a specific score) and opinion about corticosteroid AE to evaluate their needs about TEP. Patient information sources were collected.
Results 110 patients were included. Their average score was 12.5/30 points. The most troublesome AE described by patients were weight gain, lipodystrophy and neuropsychiatric manifestations. Diet induced constraints were the most inconvenient effect for 8% of patients. Most patients were informed about corticosteroid AE by their doctor. Information was sufficient according to 75% of patients and was clear for 89%. 51% of patients would like to receive a personal interview to clarify the information and 49% would prefer a written document. 6 patients suggested designing an internet platform or a smartphone application to help them manage their treatment. Information about corticosteroid AE, role of adjuvant treatments and diet were requested.
Conclusion Patients feel well informed about corticosteroid AE but their scores reflect their lack of knowledge. Diet is troublesome for many patients and could lead to poor compliance or refusal of treatment. After discussion with internists and collaboration with the dietetic team, it was agreed to systematically propose a meeting with patients at the start of corticotherapy. A clear and lucid information sheet about the recommended diet is being developed. Patients’ expectations towards TEP are wide and confirm the interest in creating an educational process or a TEP dedicated to patients receiving long term corticotherapy in our hospital.
References and/or Acknowledgements
Hervier B, et al. Evaluation des attentes des patients pour un programme d’éducation thérapeutique au cours du lupus systémique. Rev Méd Interne 2014;35:297-302.
References and/or AcknowledgementsNo conflict of interest.
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