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Improve the Quality of Life in Children with Thrombosis and Need for Oral Anticoagulation: The “Coagulin Project”

1Hospital General Universitario de Villalba, Hematology and Hemotherapy, Collado Villalba, Spain, 2Hospital Universitario Infanta Elena, Hematology and Hemotherapy, Valdemoro, Spain, 3Hospital Universitario Fundacion Jimenez Diaz, Hematology and Hemotherapy, Madrid, Spain

Abstract Number: PB1274

Meeting: ISTH 2020 Congress

Theme: Pediatrics » Thrombosis in Neonates and Children

Background: Anticoagulated children require successive clinical and analytical monitoring, with multiple hospital visits, which causes a deteriory in their quality of life and their families.
“Coagulín project”combines an innovative process of treatment,maintaining a more humane relationship and giving voice to patients, evaluating the reported health and experience results based on PROMS”Measures of results reported by the patient” and PREMS“Measures of experience reported by the patient”.

Aims: Evaluate safety and efficacy of treatment with antivitamin-K drugs in children with thrombotic pathology through computer applications.
Evaluate the degree of satisfaction reported health and experience results based on PROMS/PREMs.

Methods: We include children under16 who require oral anticoagulation.After an initial evaluation,parents are instructed in the management of the program and in the control of coagulation at home with portable coagulometers.The results obtained are sent via web through a personal link of the patient with the hospital.The hematologist receives and validates the result and sends the new treatment schedule and the date of the next control.
A direct mail is provided for technical complications.We evaluate quality of care results (efficacy/clinical safety) and humanization (degree of family satisfaction).

Results: n=17.Age:1-14 years.All with thrombotic events.
Clinical/safety results: 93%controls in range.No emergency visits.No problems related to the reliability of controls, devices or software.Quality of life results:100% report improvement of their children/families with 98%satisfaction with the program, highlighting the time gained by their children for other activities,without loss of school days or parent work.The perceived improvement in family conciliation,personalized follow-ups and the children most involved in their illness were the best qualified elements.

Conclusions: “Coagulín Project”is an innovative program that prioritizes the quality of life, humanizes analytical control and favors efficient and sustainable management of resources. The results based on the patients experience(PREMS/PROMS)demonstrate a high degree of satisfaction with the program,obtaining adequate and safe controls,without relevant complications,and with an evident improvement in the life.

To cite this abstract in AMA style:

Martos Martínez R, Yuste Platero M, Gonzalez Arias E, Bermejo Martínez L, Beltrán Álvarez P, Pascual Martínez A, Cornejo Corrales D, Llamas Sillero P. Improve the Quality of Life in Children with Thrombosis and Need for Oral Anticoagulation: The “Coagulin Project” [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/improve-the-quality-of-life-in-children-with-thrombosis-and-need-for-oral-anticoagulation-the-coagulin-project/. Accessed September 27, 2023.

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