Referral patterns in Fanconi anemia comprehensive care

Fanconi anemia is a severe life threatening disease associated with multiple physical anomalies, bone marrow failure, and increased cancer risk. Due to multiple organ system involvement comprehensive care involving consultation from various medical specialists is prudent. It is the practice of the primary hematologists at the Fanconi Anemia Comprehensive Care Center (FACCC) of a large Midwestern pediatric hospital to provide medical referrals to various medical subspecialists within the system. This quantitative descriptive study captured the referral history since the initiation of the FACCC in 2002. Thirty-nine charts were reviewed using a researcher developed data collection tool. The five medical subspecialists most frequently utilized by the primary hematologist in the comprehensive care of patients with Fanconi anemia were endocrinology, cardiology, otolaryngology, nephrology, and genetics. The five medical tests most frequently obtained in the comprehensive care of patients with Fanconi anemia include Echocardiogram, EKG, Renal Ultrasound, Bone Age Hand X-ray, and Audiogram. The information gained from this investigative project may benefit the advanced practice nurse by elevating the level of health maintenance, disease prevention, and patient education in the complex care of patients with Fanconi anemia.