2023
DOI: 10.1111/nyas.15040
|View full text |Cite
|
Sign up to set email alerts
|

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

Abstract: Today it has become the norm for individuals diagnosed with severe forms of thalassemia who have access to hypertransfusion regimens, chelation therapy, and annual surveillance to survive well beyond childhood. However, with this improvement in prognosis and subsequent transition to adult care, it has become apparent that most adult healthcare providers, including many adult hematologists and primary care providers, are ill‐prepared to care for these patients and the complications that accompany their survival… Show more

Help me understand this report

Search citation statements

Order By: Relevance

Paper Sections

Select...
1

Citation Types

0
1
0

Year Published

2024
2024
2024
2024

Publication Types

Select...
1

Relationship

0
1

Authors

Journals

citations
Cited by 1 publication
(1 citation statement)
references
References 35 publications
0
1
0
Order By: Relevance
“…Indeed, adults being at risk for many complications, such as osteoporosis, cardiac diseases, and organ failure, require treatment in a nonpediatric setting. The problem has two options: on the one hand, healthcare professionals are less prepared for this transition or are unfamiliar with adult-specific issues and on the other hand many centers remain (Sawh, 2023) focused on the care of pediatric patients including unavailability of necessary equipment. Interestingly, adult patients moving from thalassemia centers to adult healthcare facilities face the risk of not receiving proper treatment, mainly attributed to the lack of specialists and centers.…”
Section: Depression and Thalassemia In Adultsmentioning
confidence: 99%
“…Indeed, adults being at risk for many complications, such as osteoporosis, cardiac diseases, and organ failure, require treatment in a nonpediatric setting. The problem has two options: on the one hand, healthcare professionals are less prepared for this transition or are unfamiliar with adult-specific issues and on the other hand many centers remain (Sawh, 2023) focused on the care of pediatric patients including unavailability of necessary equipment. Interestingly, adult patients moving from thalassemia centers to adult healthcare facilities face the risk of not receiving proper treatment, mainly attributed to the lack of specialists and centers.…”
Section: Depression and Thalassemia In Adultsmentioning
confidence: 99%