18.01.2015 Views

guidebook. - Fanconi Anemia Research Fund

guidebook. - Fanconi Anemia Research Fund

guidebook. - Fanconi Anemia Research Fund

SHOW MORE
SHOW LESS

You also want an ePaper? Increase the reach of your titles

YUMPU automatically turns print PDFs into web optimized ePapers that Google loves.

Chapter 11: Late Effects in FA Patients Post-Transplant<br />

231<br />

be considered for audiograms after HSCT as hearing<br />

may significantly worsen after exposure to ototoxic<br />

medications.<br />

Quality of life<br />

Late effects include the medical needs and the care of<br />

the entire person, including neurocognitive deficits,<br />

anxiety, depression, social withdrawal, the effects of<br />

re-entry into society or school, and insurance problems.<br />

These quality of life issues are a vital component in<br />

the assessment of long-term health in all FA patients,<br />

regardless of age or type of therapy received. In a survey<br />

conducted by the University of Minnesota group,<br />

parents reported an improved quality of life after transplant<br />

as restoration of normal hematopoiesis resulted<br />

in fewer physician visits and less worry about risks for<br />

bleeding and infections.<br />

Conclusions<br />

Fortunately, advances in the care of FA patients have<br />

led to larger numbers of patients who survive for many<br />

years post-transplant. The goals are to understand and<br />

monitor the late effects that they face as they age, to<br />

identify the mediating factors, and to develop strategies<br />

to prevent these late effects.

Hooray! Your file is uploaded and ready to be published.

Saved successfully!

Ooh no, something went wrong!