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      Neuropsychological and biopsychosocial evolution, therapeutic adherence and unmet care needs during paediatric transplantation: study protocol of a mixed-methods design (observational cohort study and focus groups) – the TransplantKIDS mental health project


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          The present article describes the protocol of a mixed-methods study (an observational cohort design and focus groups), aimed to examine neuropsychological functioning and other biopsychosocial outcomes, therapeutic adherence and unmet care needs in paediatric population undergoing solid organ or allogeneic hematopoietic transplant during the pre- and post-transplant phases. Following a multi-method/multi-source approach, neuropsychological domains will be comprehensively measured with objective tests (SDMT, K-CPT 2/CPT 3, TAVECI/TAVEC, WISC-V/WAIS-IV Vocabulary and Digit Span subtests, Verbal Fluency tests, Stroop, ROCF, and TONI-4); ecological executive functioning, affective and behavioral domains, pain intensity/interference, sleep quality and therapeutic adherence will be assessed through questionnaires (parent/legal guardians-reported: BRIEF-2 and BASC-3; and self-reported: BASC-3, BPI, PROMIS, AIQ and SMAQ); and blood levels of prescribed drugs will be taken from each patient’s medical history. These outcomes will be measured at pre-transplant and at 4-weeks and 6-months post-transplant phases. The estimated sample size was 60 patients (any type of transplant, solid organ, or hematopoietic) from La Paz University Hospital (Madrid, Spain). Finally, three focus group sessions will be organized with patients, parents/guardians, and transplant clinicians ( n = 15, with 5 participants per group), in order to qualitatively identify unmet care needs during the pre-, and post-transplant stages of the process. The study protocol was registered at ClinicalTrials.gov (NCT05441436).

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                Front Psychol
                Front Psychol
                Front. Psychol.
                Frontiers in Psychology
                Frontiers Media S.A.
                21 February 2024
                : 15
                : 1308418
                [1] 1Department of Psychiatry, Clinical Psychology and Mental Health, La Paz University Hospital , Madrid, Spain
                [2] 2Department of Personality, Evaluation and Psychological Treatment, University of Málaga , Málaga, Spain
                [3] 3Instituto Biomédico de Málaga – IBIMA Plataforma Bionand , Málaga, Spain
                [4] 4Department of Pediatric Surgery, La Paz University Hospital , Madrid, Spain
                [5] 5Department of Pediatric Hemato-Oncology, La Paz University Hospital , Madrid, Spain
                [6] 6Hospital La Paz Institute for Health Research (IdiPAZ) , Madrid, Spain
                [7] 7Department of Pediatrics, Universidad Autónoma de Madrid (UAM) , Madrid, Spain
                [8] 8Department of Psychiatry, Universidad Autónoma de Madrid (UAM) , Madrid, Spain
                [9] 9Centro de Investigación Biomédica en Red de Salud Mental (CIBERSAM), Instituto de Salud Carlos III , Madrid, Spain
                [10] 10Faculty of Social Sciences and Communication, Universidad Europea de Madrid , Madrid, Spain
                Author notes

                Edited by: Sabrina Bonichini, University of Padua, Italy

                Reviewed by: Purificación Sierra-García, National University of Distance Education (UNED), Spain

                Emilio Verche, Complutense University of Madrid, Spain

                *Correspondence: Eduardo Fernández-Jiménez, e.fernandez.jimenez@ 123456facultyue.es
                Copyright © 2024 Garrido-Bolton, Alcamí-Pertejo, de la Vega, Hernández-Oliveros, Pérez-Martínez, Bravo-Ortiz and Fernández-Jiménez.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                : 06 October 2023
                : 11 January 2024
                Page count
                Figures: 1, Tables: 1, Equations: 0, References: 57, Pages: 10, Words: 7855
                The author(s) declare financial support was received for the research, authorship, and/or publication of this article. This research was funded by the Fundación Alicia Koplowitz, Grants for Research Projects in Psychiatry, Psychology and Child-Adolescent Neurosciences, year 2022. RV’s work was supported by the Spanish Ministry of Science and Innovation with a Ramon y Cajal contract (RYC2018-024722-I). Also, this research was funded in part by Foundation for Biomedical Research of La Paz University Hospital (FIBHULP), Becas Dr. Luis Álvarez 2022.
                Study Protocol
                Custom metadata
                Pediatric Psychology

                Clinical Psychology & Psychiatry
                neuropsychological outcomes,biopsychosocial model,organ transplantation,allogeneic hematopoietic transplantation,children/adolescents,observational cohort design,focus groups


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