Managing TDT can be demanding Lifelong management of transfusion-dependent beta (β)-thalassemia (TDT) can be burdensome for patients and caregivers^1,2

Care has evolved, but challenges with disease management remain^3,4

Over time, advances in thalassemia care have enabled improved survival for patients with TDT.^1,2 However, patients and caregivers are still significantly impacted by the disease management and its associated complications.^1,2 Ongoing management of TDT and its complications can affect^1,2:

Emotional conditions
Daily activities
Family experiences
Occupational capabilities

Lifelong transfusions and unavoidable iron overload are associated with serious complications⁵

Hospital Episode Statistics (HES) data from the National Health Service (NHS) in England were used in a bluebird-sponsored retrospective cohort analysis that reviewed comorbidities and mortality in 612 patients with TDT from 2009 to 2018. The data showed³:

Comorbidities³

76^% 76^% of patients had of patients had ≥1 ≥1

54^% 54^% of patients had of patients had ≥2 ≥2

37^% 37^% of patients had of patients had ≥3 ≥3

Despite disease management, there were multiple comorbidities in >40% of patients as young as 15 to 19 years of age—and in over half of patients before the age of 30—suggesting significant disease burden and early impact of TDT on patients.³

Patient perspectives

Having frequent, ongoing conversations early on in your relationship with patients and caregivers can enable you to forecast key points in the patient’s life that may lead to deeper discussions about their needs. Some of the life events that your patients may be considering include:

Starting elementary or high school
Attending/going away to college or other higher education
Playing sports
Starting a new job
Getting married
Planning a family

Because TDT is a lifelong condition, consider asking some of the same life questions often, as the needs and goals of patients can change over time.⁶

Help your patients plan for their tomorrow

A guide to help patients discuss their goals and work with a care team to create a treatment plan

Download the Goals Guide

Consider asking your patients with TDT:
“I understand that managing symptoms and treatments for TDT can impact your life—school, work, home, and other areas of your routine and personal goals. Can you share some examples of these challenges?”

It’s time to rethink conversations with patients
of all ages who have TDT It’s time to rethink conversations with patients of all ages who have TDT

Take a closer look at quality of life (QoL) impact Take a closer look at quality of life (QoL) impact

Long disease-management times

Long disease-
management times

In a 2019 real-world study with 85 participants, patients and caregivers reported spending ~11 hours a week managing TDT⁷

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Lower HRQoL scores

In a study of 264 patients, thalassemia patients reported having a lower health-related QoL than the general population¹