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
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 all...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2024-02-01
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| Series: | Frontiers in Psychology |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyg.2024.1308418/full |
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| author | Jessica Garrido-Bolton Margarita Alcamí-Pertejo Rocío de la Vega Rocío de la Vega Francisco Hernández-Oliveros Antonio Pérez-Martínez Antonio Pérez-Martínez Antonio Pérez-Martínez María Fe Bravo-Ortiz María Fe Bravo-Ortiz María Fe Bravo-Ortiz María Fe Bravo-Ortiz Eduardo Fernández-Jiménez Eduardo Fernández-Jiménez Eduardo Fernández-Jiménez |
| author_facet | Jessica Garrido-Bolton Margarita Alcamí-Pertejo Rocío de la Vega Rocío de la Vega Francisco Hernández-Oliveros Antonio Pérez-Martínez Antonio Pérez-Martínez Antonio Pérez-Martínez María Fe Bravo-Ortiz María Fe Bravo-Ortiz María Fe Bravo-Ortiz María Fe Bravo-Ortiz Eduardo Fernández-Jiménez Eduardo Fernández-Jiménez Eduardo Fernández-Jiménez |
| author_sort | Jessica Garrido-Bolton |
| collection | DOAJ |
| description | 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). |
| first_indexed | 2024-03-07T23:21:19Z |
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| institution | Directory Open Access Journal |
| issn | 1664-1078 |
| language | English |
| last_indexed | 2024-03-07T23:21:19Z |
| publishDate | 2024-02-01 |
| publisher | Frontiers Media S.A. |
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| series | Frontiers in Psychology |
| spelling | doaj.art-ced23f7426d54f02acf8bd134f20b7b52024-02-21T05:51:59ZengFrontiers Media S.A.Frontiers in Psychology1664-10782024-02-011510.3389/fpsyg.2024.13084181308418Neuropsychological 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 projectJessica Garrido-Bolton0Margarita Alcamí-Pertejo1Rocío de la Vega2Rocío de la Vega3Francisco Hernández-Oliveros4Antonio Pérez-Martínez5Antonio Pérez-Martínez6Antonio Pérez-Martínez7María Fe Bravo-Ortiz8María Fe Bravo-Ortiz9María Fe Bravo-Ortiz10María Fe Bravo-Ortiz11Eduardo Fernández-Jiménez12Eduardo Fernández-Jiménez13Eduardo Fernández-Jiménez14Department of Psychiatry, Clinical Psychology and Mental Health, La Paz University Hospital, Madrid, SpainDepartment of Psychiatry, Clinical Psychology and Mental Health, La Paz University Hospital, Madrid, SpainDepartment of Personality, Evaluation and Psychological Treatment, University of Málaga, Málaga, SpainInstituto Biomédico de Málaga – IBIMA Plataforma Bionand, Málaga, SpainDepartment of Pediatric Surgery, La Paz University Hospital, Madrid, SpainDepartment of Pediatric Hemato-Oncology, La Paz University Hospital, Madrid, SpainHospital La Paz Institute for Health Research (IdiPAZ), Madrid, SpainDepartment of Pediatrics, Universidad Autónoma de Madrid (UAM), Madrid, SpainDepartment of Psychiatry, Clinical Psychology and Mental Health, La Paz University Hospital, Madrid, SpainHospital La Paz Institute for Health Research (IdiPAZ), Madrid, SpainDepartment of Psychiatry, Universidad Autónoma de Madrid (UAM), Madrid, SpainCentro de Investigación Biomédica en Red de Salud Mental (CIBERSAM), Instituto de Salud Carlos III, Madrid, SpainDepartment of Psychiatry, Clinical Psychology and Mental Health, La Paz University Hospital, Madrid, SpainHospital La Paz Institute for Health Research (IdiPAZ), Madrid, Spain0Faculty of Social Sciences and Communication, Universidad Europea de Madrid, Madrid, SpainThe 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).https://www.frontiersin.org/articles/10.3389/fpsyg.2024.1308418/fullneuropsychological outcomesbiopsychosocial modelorgan transplantationallogeneic hematopoietic transplantationchildren/adolescentsobservational cohort design |
| spellingShingle | Jessica Garrido-Bolton Margarita Alcamí-Pertejo Rocío de la Vega Rocío de la Vega Francisco Hernández-Oliveros Antonio Pérez-Martínez Antonio Pérez-Martínez Antonio Pérez-Martínez María Fe Bravo-Ortiz María Fe Bravo-Ortiz María Fe Bravo-Ortiz María Fe Bravo-Ortiz Eduardo Fernández-Jiménez Eduardo Fernández-Jiménez Eduardo Fernández-Jiménez 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 Frontiers in Psychology neuropsychological outcomes biopsychosocial model organ transplantation allogeneic hematopoietic transplantation children/adolescents observational cohort design |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | neuropsychological outcomes biopsychosocial model organ transplantation allogeneic hematopoietic transplantation children/adolescents observational cohort design |
| url | https://www.frontiersin.org/articles/10.3389/fpsyg.2024.1308418/full |
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