Purpose: To elucidate the education needs of patients who have undergone lung transplant for cystic fibrosis while participating in the development of therapeutic education programs in French transplant centers.
Methods: From January 2009 to March 2012, in-depth educational diagnosis interviews were conducted with 42 adult transplant recipients with cystic fibrosis who were being followed up at 7 French transplant centers. Several areas were explored: health status, social and occupational outcomes, knowledge about the disease and treatments, and experience of the disease. The interviews combined open- and closed-ended questions for more systematic exploration of knowledge about the disease and treatments.
Results: After receiving the transplant, the patients' health had improved and their lives were returning to normal. They had acquired much usable knowledge about managing their disease. Educational needs regarding transplant-related complications and management of immunosuppressive drugs were evident. The analysis also demonstrated the need to better inform patients about pregnancy and new social rights and to offer them psychological support in adjusting to their new health status.
Conclusion: Therapeutic education of patients should continue well after transplant to maintain safety knowledge and meet patients' new needs. A comprehensive therapeutic education program for transplant candidates that includes the preparatory, immediate posttransplant, and late posttransplant phases is needed.