Transfer of Care for People with Severe Forms of Thalassemia: Learning from Past Experiences to Create a Transition Plan

Psychological Burden among Pediatric Thalassemia Major Patients in Indonesia: A Review

“…A study [54] found that most thalassemia patients who enter adulthood (greater than or equal to 18 years) still prefer to be treated under pediatric care. Although some advantages may be obtained for adults being treated in pediatric care, it also brings negative effects; for example, pediatricians and medical staff may have less knowledge about adult problems such as reproductive health [52,55].…”

The patient perspective: The struggles of living with thalassemia as an adult

“…As a result, patients are compelled to advocate for their needs as the doctors tasked with their care may not understand their transfusion requirements, the nuances of chelation therapy, or the inherent risk of comorbidities. [20][21][22] Balancing the normal challenges of adulthood with the demands of living with a rare genetic blood disorder is difficult enough without the added struggle of trying to find a provider who is competent in our care. 23 Since I outgrew my pediatrician (who was also my pediatric hematologist), I have not had a consistent primary care provider (PCP).…”

“…A recent article by Chandra and Sahi provides a practical framework to accomplish this, including the creation of a transition team with a designated “chief coordinator,” developing a transition policy, and empowering patients to become well versed in their disease and its management so they can advocate for their needs if necessary 34 . Patients will also require ongoing support, 35 with nurse practitioners and genetic counselors well suited through their training and experience to provide a high level of care and resources as required 20 …”

“…34 Patients will also require ongoing support, 35 with nurse practitioners and genetic counselors well suited through their training and experience to provide a high level of care and resources as required. 20 The key is helping adult providers gain confidence in the nuanced care of adult patients through continuing education. 21 There are several easily accessible, on-demand webinars and grand rounds covering various topics related to thalassemia management offered by the Cooley's Anemia Foundation, the Thalassemia International Federation as well as continuing medical courses sponsored by industry partners.…”

“…Many adult hematologists are unfamiliar with both the hypertransfusion regimen that has become the standard of care for people with thalassemia major and the importance of chelation. As a result, patients are compelled to advocate for their needs as the doctors tasked with their care may not understand their transfusion requirements, the nuances of chelation therapy, or the inherent risk of comorbidities 20–22 …”