1
40
6
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April 2024 List
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April List 2024
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<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/clinpract14010010</a>
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Title
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The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
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Clinics and Practice
Date
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2024
Subject
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child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
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Nogueira AJ; Ribeiro MT
Description
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In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Identifier
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<a href="http://doi.org/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
Adolescent
April List 2024
Article
Caregiver
Child
Clinical Article
clinical assessment tool
Clinical Practice
Clinics and Practice
Coping
Coping Strategy Questionnaire
Family
Female
grandchild
grandparent
Human
Male
Nogueira AJ
Palliative Care
Palliative Therapy
Portugal
psychologic assessment
Ribeiro MT
Semi Structured Interview
Sibling
Social Support
-
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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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February List 2024
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<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07853890.2023.2268093</a>
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Title
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A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Publisher
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Annals of Medicine
Date
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2023
Subject
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child; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Creator
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Nogueira AJ; Ribeiro MT
Description
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Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Identifier
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<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Annals Of Medicine
Article
Caregiver
Child
Clinical Article
Coping Behavior
Coping Strategy Questionnaire
February List 2024
Human
Nogueira AJ
Palliative Therapy
Parent
Portugal
psychologic assessment
Questionnaire
Ribeiro MT
Semi Structured Interview
Social Support
Therapy
United Kingdom
VULNERABILITY
-
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.20344/amp.18071" target="_blank" rel="noreferrer noopener"> http://doi.org/10.20344/amp.18071</a>
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Title
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[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]
Publisher
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Acta Médica Portuguesa
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Translations; Adolescent; Child; Chronic Disease; Humans; Needs Assessment; Portugal; Psychometrics; Reproducibility of Results; Surveys and Questionnaires; Young Adult
Creator
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Simoes MJP; Tavares F; Machado MdC
Description
An account of the resource
INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative care and facilitate their timely and appropriate referral. The aim of this study was to translate, culturally adapt and validate the PaPaS Scale for the Portuguese pediatric population., MATERIAL AND METHODS: A quantitative methodological study involving translation, cultural adaptation and validation of a scale was performed. In the first phase, the translation and cultural adaptation of the original version of the PaPaS Scale from English to European Portuguese was undertaken. The second phase consisted of evaluating the psychometric properties of the Portuguese version of the PaPaS Scale., RESULTS: Fifty-one enquires pertaining to children/young adults with complex chronic conditions were completed and returned, the sum of the responses to the items on the scale revealed that 84.4% of the patients had an indication for referral to pediatric palliative care. The internal consistency analysis obtained a value of Cronbach's alpha above 0.80, so the scale was considered adequate for the analyzed data. In our sample, the item-total correlation values indicated that the 11 variables measured the PaPaS Scale with good reliability and unidimensionally. The confirmatory factor analysis suggested that the items were significant, consistent, and presented convergent validity globally. Only item "2.2. Treatment side effects" obtained a value below the defined threshold., CONCLUSION: The PaPaS Scale was translated and adapted to the European Portuguese version, allowing its immediate use in the Portuguese population. It will be essential to design multicentric studies to expand the knowledge about the psychometric characteristics of this scale.
Identifier
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<a href="http://doi.org/10.20344/amp.18071" target="_blank" rel="noreferrer noopener">10.20344/amp.18071</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Acta Médica Portuguesa
Adolescent
Child
Chronic Disease
Humans
July List 2023
Machado MdC
Needs Assessment
Portugal
Psychometrics
Reproducibility of Results
Simoes MJP
Surveys And Questionnaires
Tavares F
Translations
Young Adult
-
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Title
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January 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2020 List
URL Address
<a href="http://doi.org/10.1590/0034-7167-2018-0842" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/0034-7167-2018-0842</a>
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Title
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Perception of health professionals about neonatal palliative care
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Revista Brasileira de Enfermagem
Date
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2019
Subject
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Attitude of Health Personnel; Content Analysis; Human; Infant; Intensive Care Units; Neonatal; Newborn; Palliative Care -- In Infancy and Childhood; Phenomenological Research; Portugal; Professional-Patient Relations; Qualitative Studies; Quality of Life
Creator
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Batoca Silva E M; Machado Silva M J; Marques Silva D
Description
An account of the resource
Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care. Objetivo: Identificar la percepción de los profesionales del equipa de la salud sobre los cuidados paliativos neonatales. Método: Estudio cualitativo fenomenológico, muestra no probabilística de 15 profesionales de la salud de una unidad neonatal del norte de Portugal. Se realizó análisis de contenido. Resultados: A pesar de la falta de formación en cuidados paliativos, los profesionales revelaron preocupación por la dignidad, calidad de vida y confort del recién nacido y su familia. Expresaron dificultades emocionales y relacionales para acompañar las trayectorias de la enfermedad severa y de la muerte y para lidiar con la decisión ética. Conclusión: Debemos destacar que los profesionales son sensibles al dolor, sufrimiento y se muestran dedicados y comprometidos en el cuidado del recién nacido y la familia. Están disponibles para participar en formación y abrazar los desafíos actuales que pasan por la constitución de equipos de cuidados paliativos pediátricos y por lograr una cultura organizacional que permita el progreso de esos cuidados. Objetivo: Identificar a percepção dos profissionais da equipa de saúde sobre os cuidados paliativos neonatais. Método: Estudo qualitativo fenomenológico, amostra não probabilística de 15 profissionais da equipa de saúde de uma unidade de cuidados intensivos neonatal, do norte de Portugal. Realizou-se análise de conteúdo. Resultados: Apesar da falta de formação em cuidados paliativos, os profissionais revelaram preocupação com a dignidade, qualidade de vida e conforto do recém-nascido e família. Expressaram dificuldades emocionais e relacionais no acompanhar as trajetórias de doença grave e morte e a nível da decisão ética no final de vida. Conclusão: Salientamos que os profissionais estão sensíveis à dor e sofrimento e mostram-se dedicados e comprometidos no cuidar do recém-nascido e família. Mostram-se disponíveis para fazer formação e abraçar os desafios atuais que passam pela constituição de equipas de cuidados paliativos pediátricos e o alcançar de uma cultura organizacional que progrida nesses cuidados.
Identifier
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<a href="http://doi.org/10.1590/0034-7167-2018-0842" target="_blank" rel="noreferrer noopener">10.1590/0034-7167-2018-0842</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Attitude Of Health Personnel
Batoca Silva E M
Content Analysis
Human
Infant
Intensive Care Units
January 2020 List
Machado Silva M J
Marques Silva D
Neonatal
Newborn
Palliative Care -- In Infancy and Childhood
Phenomenological Research
Portugal
Professional-patient Relations
Qualitative Studies
Quality Of Life
Revista Brasileira de Enfermagem
-
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Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.20344/amp.10437" target="_blank" rel="noreferrer noopener">http://doi.org/10.20344/amp.10437</a>
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Hospital inpatient use in mainland Portugal by children with complex chronic conditions (2011 - 2015). [Portuguese]
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Acta Medica Portuguesa
Date
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2019
Subject
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death; Child; adolescent; article; child; female; human; male; palliative therapy; pediatric patient; retrospective study; controlled study; Hospitalization; national health service; length of stay; Palliative care; newborn; hospitalization; nonparametric test; mortality; cancer radiotherapy; developed country; hospital patient; needs assessment; Needs assessment; outpatient; Portugal; radiotherapy
Creator
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Lacerda A F; Oliveira G; Cancelinha C; Lopes S
Description
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Introduction: Due to epidemiological change, interest in complex chronic conditions has been increasing within the pediatric health system. As such, we aim to evaluate hospital inpatient care in the National Health Service (mainland Portugal) by pediatric patients (0 - 17 years) with complex chronic conditions. Material(s) and Method(s): Observational longitudinal retrospective epidemiological study using anonymized administrative data. We selected hospitalizations within the pediatric age limit, 2011 - 2015; healthy newborns and radiotherapy outpatients were excluded. A descriptive analysis of the admissions with complex chronic conditions was analysed by number of complex chronic conditions categories and by complex chronic conditions categories. Non-parametric tests were applied to length of stay, expense, and mortality. Result(s): Out of 419 927 admissions, 64 918 (15.5%) contained at least one complex chronic conditions code. These admissions due to complex chronic conditions represented 29.8% of hospital days, 39.4% of expense and 87.2% of deaths. Compared to those without complex chronic conditions, expense was double (median 1467 vs 745) and mortality 40 times higher (2.4% vs 0.06%). Of these, 46% were planned (no complex chronic conditions 23.2%); 64.8% occurred in group III - IV hospitals (no complex chronic conditions 27.1%). Malignant was the most frequent category (23.0%); neonatal had the highest median length of stay (12 days, 6 - 41), median expense (3568,929 - 24 602), and number of deaths (43.5% of total). Discussion(s): As in other developed countries where the number of pediatric admissions is decreasing, in mainland Portugal we found an increase in the proportion of complex chronic conditions admissions, which are longer, costlier and deadlier (trends intensified in the presence of two or more complex chronic conditions categories). Conclusion(s): Complex chronic conditions are relevant in the activity and costs regarding pediatric hospitalizations in mainland Portugal. Recognizing this and integrating pediatric palliative care from the moment of diagnosis are essential to promote appropriate hospital use, through the development of effective and sustainable alternatives that meet the needs of children, families, and healthcare professionals. Copyright © 2019, CELOM. All rights reserved.
Identifier
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<a href="http://doi.org/10.20344/amp.10437" target="_blank" rel="noreferrer noopener">10.20344/amp.10437</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Acta Médica Portuguesa
Adolescent
Article
Cancelinha C
cancer radiotherapy
Child
Controlled Study
Death
developed country
Female
Hospital Patient
Hospitalization
Human
Lacerda A F
Length Of Stay
Lopes S
Male
Mortality
national health service
Needs Assessment
Newborn
nonparametric test
October 2019 List
Oliveira G
Outpatient
Palliative Care
Palliative Therapy
pediatric patient
Portugal
Radiotherapy
Retrospective Study
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener">http://doi.o
rg/</a>
Dublin Core
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Title
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Aggressiveness of care at the end of life in children with cancer: A nationwide cohort study
Publisher
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Annals of Oncology
Date
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2017
Subject
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quality of life; Cause of Death; Child; Prevalence; Cohort Studies; Palliative Care; Aggression; cancer staging; major clinical study; cohort analysis; Quality of Life; Only Child; school child; developmental stage; Portugal; Icd-9; multicenter study; human; child; female; male; hospitalization; palliative therapy; resuscitation; morbidity; prevalence; intensive care unit; total parenteral nutrition; aggressiveness; immunotherapy; vascular access
Creator
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Cardoso A; Martins BD; Lacerda A; Gomes B; Lopes S
Description
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Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how many children dying from cancer experience aggressive care near the end of life (ACCEoL) in such settings (the most common worldwide). Our study aims to determine time trends in the prevalence of ACCEoL in this population. Methods: Cohort study of children (0-17yo)who died with ICD-9-CMdiagnosis of cancer in public hospitals in mainland Portugal (Jan'10 toDec'15), identified fromthe Hospital Morbidity database. Based on previous studies and clinical experience, measures of ACCEoL comprised: in last 14 days of life: a) intravenous chemo/immunotherapy; in last 30 days of life: b)>14 days spent in hospital, c)>1 hospitalization, d) intensive care unit (ICU) admission, e) advanced life support (e.g. cardiopulmonary resuscitation), f) insertion of devices (e.g. central vascular access, CVA), g) total parenteral nutrition (TPN).We calculated prevalences and tested for time trends using chi2 for trend. Results: The study included 300 patients (median age 9 yo, IQR 4-14, 58.7%male). The prevalence of ACCEoL was stable over time, with 87.8%of the children experiencing at least one ACCEoLmeasure (85.2%in 2010, 88.4%in 2015; p=0.816)). Themost prevalent individual ACCEoL measures were>14 days spent in hospital (51.0%) and>1 hospitalization (43.3%). Most measures showed no statistically significant time trend. Conclusions: In a setting in early stages of pediatric palliative care development, we found that eight in ten children dying from cancer experience ACcEoL in their last month of life. This estimate is higher than those found in countries in more advanced developmental stages and may indicate a need to increase paediatric palliative care availability. The findings also prompt healthcare professionals to reflect on their current practice, balancing treatments and hospitalisations with patients' quality of life in the days they have to live.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
2017
Aggression
aggressiveness
Annals of Oncology
Cancer Staging
Cardoso A
Cause Of Death
Child
Cohort Analysis
Cohort Studies
developmental stage
Female
Gomes B
Hospitalization
Human
Icd-9
immunotherapy
Intensive Care Unit
Lacerda A
Lopes S
Major Clinical Study
Male
Martins BD
Morbidity
Multicenter Study
Oncology 2018 List
Only Child
Palliative Care
Palliative Therapy
Portugal
Prevalence
Quality Of Life
Resuscitation
School Child
total parenteral nutrition
vascular access