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Chapter 11: Late Effects in FA Patients Post-Transplant 231 be considered for audiograms after HSCT as hearing may significantly worsen after exposure to ototoxic medications. Quality of life Late effects include the medical needs and the care of the entire person, including neurocognitive deficits, anxiety, depression, social withdrawal, the effects of re-entry into society or school, and insurance problems. These quality of life issues are a vital component in the assessment of long-term health in all FA patients, regardless of age or type of therapy received. In a survey conducted by the University of Minnesota group, parents reported an improved quality of life after transplant as restoration of normal hematopoiesis resulted in fewer physician visits and less worry about risks for bleeding and infections. Conclusions Fortunately, advances in the care of FA patients have led to larger numbers of patients who survive for many years post-transplant. The goals are to understand and monitor the late effects that they face as they age, to identify the mediating factors, and to develop strategies to prevent these late effects.
232 Fanconi Anemia: Guidelines for Diagnosis and Management Table 2: Fanconi Anemia Long-term Follow-up Clinical Evaluation Return Visit Post-Transplant 1 year 2 year 3 year 4 year 5 year Every year Every 5 years History, exam, vital signs X X X X X X X Hematology CBC with differential X X X X X X Bone marrow aspirate/biopsy with chimerism, X X cytogenetics a Ferritin plus total body iron X R R R R X assessment b Endocrine Oral glucose tolerance test (OGTT) X X X X X X X Free T4, TSH X X X X X X X LH/FSH (females ≥10 yr, males ≥11 X X X X X C yr) c Ultrasensitive Estradiol (females X X X X X C ≥10 yr) c Testosterone † (males ≥11 yr) c X X X X X C IGF-1, IGFBP-3 X X X X X C (
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Chapter 4 Gastrointestinal, Hepatic
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Chapter 7 Endocrine Disorders in Fa
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Chapter 9 Matched Sibling Donor Hem
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