Adults with sickle cell anaemia: specific patient competencies required for day-to-day management of hydroxyurea treatment

Introduction: Sickle cell disease (SCD) is a genetic haemoglobin abnormality responsible for various complications including chronic haemolytic anaemia and vaso-occlusive crises. Hydroxyurea (HU) therapy is used in patients with severe symptoms to improve the clinical course. To be effective and safe, hydroxyurea therapy must be monitored and patients must acquire specific competencies. Objectives: To establish competency standards relative to HU treatment for adults with SCD. Methods: A group of professionals experienced with SCD and trained in therapeutic patient education (TPE) held three day-long meetings to discuss HU-related competencies. Results: The competencies were listed in a single document. An assessment grid and a knowledge questionnaire for individual patient education sessions were also created. Discussion: HU is a chemotherapy agent whose use requires careful monitoring and specific patient competencies, which can be acquired via TPE. Furthermore, TPE can address the concerns and misconceptions associated with HU. Competency standards have proved helpful for designing TPE programmes. The competency standards reported here are unique, as they focus on a specific treatment used in a specific disease, instead of on the full range of issues related to a disease. Conclusion: This work is a first step towards harmonising TPE programmes for adults taking HU for SCD.