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J Pediatr Hematol Oncol ; 39(3): 223-229, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-28099398

RESUMO

Iron chelation therapy can prevent iron overload for pediatric patients with sickle cell disease and ß-thalassemia major; however, adherence is suboptimal. Therefore, we developed an intensive training program (ITP), to improve medication management and disease knowledge. The objectives were to determine feasibility of the ITP and its preliminary impact on adherence, disease knowledge, and health outcomes. Pediatric patients were recruited to participate in the ITP over a 90-day period and were followed for 6 months. The ITP consisted of 3 components: (1) provider-led education modules; (2) patient recording daily videos of at-home medication administration; and (3) provider feedback through video messages through the ITP app. Eleven patients participated (mean=12.4 y). Initially, patients endorsed high satisfaction and ease of use and tracked their medication usage 81% (24 out of 30) of days. At 90 days, adherence rates remained consistent (80%) and disease knowledge retention was high (96%). At 6 months, participants exhibited a clinically relevant decrease in serum ferritin, which trended toward statistical significance (P=0.068). Medication possession ratio did not significantly increase (0.65 to 0.72; not significant). The mobile ITP was feasibly implemented in a clinical setting; in addition, high levels of compliance, disease knowledge retention, and acceptance encourage larger studies evaluating mobile health technology to improve child health parameters.


Assuntos
Transfusão de Sangue , Terapia por Quelação/métodos , Cooperação do Paciente , Conhecimento do Paciente sobre a Medicação , Adolescente , Criança , Educação , Feminino , Humanos , Quelantes de Ferro , Masculino , Educação de Pacientes como Assunto , Projetos Piloto , Gravação em Vídeo , Adulto Jovem
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