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Poor adherence during adolescence is a risk factor for becoming lost-to-follow-up in patients with phenylketonuria.
Beghini, Marianna; Pichler, Maximilian; Tinnefeld, Fiona Carolina; Metz, Matthäus; Möslinger, Dorothea; Konstantopoulou, Vassiliki; Spenger, Johannes; Kautzky-Willer, Alexandra; Frommlet, Florian; Scherer, Thomas; Hufgard-Leitner, Miriam.
  • Beghini M; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Pichler M; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Tinnefeld FC; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Metz M; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Möslinger D; Department of Paediatrics and Adolescent Medicine, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Konstantopoulou V; Department of Paediatrics and Adolescent Medicine, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Spenger J; University Children's Hospital, Salzburger Landeskliniken (SALK) and Paracelsus Medical University (PMU), 5020 Salzburg, Austria.
  • Kautzky-Willer A; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Frommlet F; Center for Medical Data Science (Institute of Medical Statistics), Medical University of Vienna, Spitalgasse 23, 1090 Vienna, Austria.
  • Scherer T; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
  • Hufgard-Leitner M; Division of Endocrinology and Metabolism, Department of Internal Medicine III, Medical University of Vienna, Währinger Gürtel 18-20, 1090 Vienna, Austria.
Mol Genet Metab Rep ; 39: 101087, 2024 Jun.
Article en En | MEDLINE | ID: mdl-38766496
ABSTRACT

Purpose:

A high rate of lost to follow-up (LTFU) in patients with phenylketonuria (PKU) represents a main challenge. In this study, we investigated potential risk factors for becoming LTFU related to adolescence as a critical period of life.

Methods:

We retrospectively analyzed longitudinal data collected from 1993 to 2019 of patients diagnosed with classic PKU that were followed at our center during adolescence (14-18 y) and at least once in adulthood (>18 y). Patients who interrupted their contact with our center after the 18th birthday for at least 2 years were classified as LTFU. We performed a multivariate regression analysis to investigate following potential risk factors for becoming LTFU in adult life sex, dietary compliance during adolescence assessed through the mean of the annual medians of phenylalanine plasma values, average number of contacts with the center during adolescence and age at first visit after the 18th birthday.

Results:

93 patients (52 males, 41 females) were included in the study. 58% became LTFU during adulthood. The mean age at the last visit before becoming LTFU was 26.2 ± 5.1 years. In the multivariate Cox regression analysis we found that poor dietary compliance during adolescence was significantly associated with a higher risk of becoming LTFU during adulthood (p-value = 0.028).

Discussion:

Adult patients who displayed poor treatment adherence during adolescence should be identified and carefully monitored to prevent loss of contact.
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