Patient follow-up is a major problem at genetics clinics

• Published in: American journal of medical genetics 2004-03, Vol.125A (2), p.162-166
• Main Authors: Esmer, Carmen, Urraca, Nora, Carnevale, Alessandra, Del Castillo, Victoria
• Format: Article
• Language: English
• Subjects: appointment keeping behavior; Biological and medical sciences; Follow-Up Studies; General aspects. Genetic counseling; Genetic Counseling; genetic diseases; Genetic Predisposition to Disease - genetics; Genetic Predisposition to Disease - prevention & control; Genetic Testing; Humans; Medical genetics; Medical Records; Medical sciences; Outpatient Clinics, Hospital; Patient Compliance; Patient Dropouts; Patient Education as Topic
• ISSN: 1552-4825; 0148-7299; 1552-4833; 1096-8628
• DOI: 10.1002/ajmg.a.20303

Children with genetic diseases must be followed for long periods of time to seek new findings. Other patients require further check‐ups and studies to be diagnosed. Some patients never return for medical care after the first consultation, which may have serious consequences. We reviewed 400 medical charts of patients with genetic disease to analyze overall attendance to the genetics clinic, investigate some of the causes of failure to seek medical advice, and determine the differences between those first seen as outpatients or as inpatients. The mean follow‐up period was 8.3 months (range 0–79), and the average number of visits was 2.8 (range 1–16). Forty eight percent of the cases first seen as inpatients were evaluated only once and 14% twice; while 22 and 21% of the 300 cases first seen as outpatients attended once and twice, respectively (P = 0.0). Appointment keeping was apparently not affected by the presence or absence of diagnosis. Overall, 97 patients were discharged, 7 died, 55 continued on follow‐up, 62 attended other hospital services—but not genetics—and 179 were completely lost to follow‐up. Diagnosed patients were counseled more frequently than undiagnosed patients (62 vs. 5%); and 71% of the diagnosed patients first seen as outpatients but only 36% of undiagnosed cases first seen as inpatients were counseled, differences between these two groups were significant (P = 0.005). We conclude that keeping the patient with genetic disease on follow‐up is a difficult task. New educational strategies must be planned to improve this worrisome situation. © 2003 Wiley‐Liss, Inc.