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1.
BMC Palliat Care ; 22(1): 117, 2023 Aug 16.
Artigo em Inglês | MEDLINE | ID: mdl-37587514

RESUMO

BACKGROUND: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. METHODS: Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. RESULTS: Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. CONCLUSIONS: Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Criança , Cuidados Paliativos , Pesquisa Qualitativa , Reino Unido
2.
Br Med Bull ; 130(1): 81-88, 2019 06 19.
Artigo em Inglês | MEDLINE | ID: mdl-31222265

RESUMO

INTRODUCTION: Children's hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services. SOURCES OF DATA: Published research, Together for Short Lives. AREAS OF AGREEMENT: The services hospices offer are highly valued by families. AREAS OF CONTROVERSY: It is not always clear that hospices can be described as 'specialist', which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector. GROWING POINTS: Children's palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care. AREAS TIMELY FOR DEVELOPING RESEARCH: If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.


Assuntos
Serviços de Saúde da Criança/normas , Cuidados Paliativos na Terminalidade da Vida/normas , Hospitais para Doentes Terminais/normas , Cuidados Paliativos/normas , Pediatria , Criança , Pesquisas sobre Atenção à Saúde , Pessoal de Saúde , Humanos , Avaliação de Resultados em Cuidados de Saúde
3.
J Med Ethics ; 44(7): 458-461, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29724810

RESUMO

The public often believes that parents have a right to make medical decisions about their child. The idea that, in respect of children, doctors should do what parents tell them to do is problematic on the face of it. The effect of such a claim would be that a doctor who acted deliberately to harm a child would be making a morally correct decision, providing only that it is what the child's parents said they wanted. That is so obviously nonsense that it cannot be what people who claim it actually mean. In this paper, I suggest that the claim actually represents either or both of two misunderstandings. It can be a result of wrongly appealing to the principle of respect for autonomy, or a belief that doctors are not committed to acting in the interests of the child. In this paper, I show that, while neither belief is entirely justified, there are elements of truth in both. I argue that if ethically correct decisions are those that are directed to improving the quality of a child's existence, then neither parents nor doctors are in a position to make ethically correct decisions about a child except in discussion with one another. Where such discussion is not possible, I suggest there should be a national Children's Interests Panel to agree on the child's interests. The panel should include, but not be limited to, paediatricians and lawyers and its decisions should be legally binding on all parties.


Assuntos
Consentimento Livre e Esclarecido/ética , Futilidade Médica/ética , Princípios Morais , Pais/psicologia , Relações Médico-Paciente/ética , Suspensão de Tratamento/ética , Criança , Dissidências e Disputas , Humanos , Futilidade Médica/legislação & jurisprudência , Qualidade de Vida
4.
J Med Ethics ; 43(11): 766-770, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-28280059

RESUMO

INTRODUCTION: The General Medical Council (GMC) stipulates that doctors must be competent professionals, not merely scholars and practitioners. Medical school curricula should enable students to develop professional values and competencies. Additionally, medical schools are moving towards integrated undergraduate curricula, Cardiff's C21 being one such example. METHODS: We carried out an audit to determine the extent to which C21 delivers GMC professionalism competencies, and a student questionnaire to explore student perspective on ethics and professionalism. RESULTS AND DISCUSSION: C21 delivers explicit or implicit teaching for all major GMC competencies, though some missed opportunities remain. The questionnaire responses showed that most students value ethics and professionalism teaching, and that it is most well received when delivered in a variety of ways and contexts throughout the curriculum. We also note that some respondents confuse ethics and professionalism with the policing of student behaviour. CONCLUSIONS: C21 and curricula like it offer many opportunities for nurturing ethically and professionally competent physicians. Students appear to value this, though there remains confusion between medical school discipline and ethics and professionalism which needs further explication.


Assuntos
Atitude , Currículo , Educação de Graduação em Medicina , Ética Médica/educação , Competência Profissional , Profissionalismo/educação , Estudantes de Medicina , Humanos , Inquéritos e Questionários
5.
Proc Natl Acad Sci U S A ; 110(18): 7429-33, 2013 Apr 30.
Artigo em Inglês | MEDLINE | ID: mdl-23569245

RESUMO

Acute lymphoblastic leukemia (ALL) is the major pediatric cancer. At diagnosis, the developmental timing of mutations contributing critically to clonal diversification and selection can be buried in the leukemia's covert natural history. Concordance of ALL in monozygotic, monochorionic twins is a consequence of intraplacental spread of an initiated preleukemic clone. Studying monozygotic twins with ALL provides a unique means of uncovering the timeline of mutations contributing to clonal evolution, pre- and postnatally. We sequenced the whole genomes of leukemic cells from two twin pairs with ALL to comprehensively characterize acquired somatic mutations in ALL, elucidating the developmental timing of all genetic lesions. Shared, prenatal, coding-region single-nucleotide variants were limited to the putative initiating lesions. All other nonsynonymous single-nucleotide variants were distinct between tumors and, therefore, secondary and postnatal. These changes occurred in a background of noncoding mutational changes that were almost entirely discordant in twin pairs and likely passenger mutations acquired during leukemic cell proliferation.


Assuntos
Análise Mutacional de DNA , Genoma Humano/genética , Mutação/genética , Leucemia-Linfoma Linfoblástico de Células Precursoras/genética , Criança , Pré-Escolar , Humanos , Fatores de Tempo
6.
Lancet ; 384(9946): 904-14, 2014 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-25209490

RESUMO

In the past century, child mortality has fallen to very low rates in all developed countries. However, rates between and within countries vary widely, and factors can be identified that could be modified to reduce the risk of future deaths. An understanding of the nature and patterns of child death and of the factors contributing to child deaths is essential to drive preventive initiatives. We discuss the epidemiology of child deaths in England and Wales. We use available data, particularly that of death registration and other available datasets, and published literature to emphasise issues relevant to reduction of child deaths in developed countries. We examine the different patterns of mortality at different ages in five broad categories of death: perinatal causes, congenital abnormalities, acquired natural causes, external causes, and unexplained deaths. For each category, we explore what is known about the main causes of death and some of the contributory factors. We then explain how this knowledge might be used to help to drive prevention initiatives.


Assuntos
Causas de Morte/tendências , Mortalidade da Criança/tendências , Mortalidade Infantil/tendências , Acidentes de Trânsito/estatística & dados numéricos , Adolescente , Distribuição por Idade , Criança , Maus-Tratos Infantis/mortalidade , Pré-Escolar , Inglaterra/epidemiologia , Homicídio/estatística & dados numéricos , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro/fisiologia , Distribuição por Sexo , Suicídio/estatística & dados numéricos , Violência/estatística & dados numéricos , País de Gales/epidemiologia
7.
Palliat Med ; 28(6): 530-533, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24280277

RESUMO

BACKGROUND: Paediatric palliative care is still often introduced late in the illness trajectory of children with life-limiting diseases. Translating palliative care into practice continues to be a challenge. AIM: To validate the Paediatric Palliative Screening Scale further by defining attributes that predict the need for palliative care in children between 1 and 18 years. DESIGN: Proportional-odds logistic regression analysis was performed to investigate the relationship between the attributes of the Paediatric Palliative Screening Scale and the experts' assessment of case vignettes with various combinations of different attribute characteristics. Estimates from regression analysis were transformed to empirical weightings of the Paediatric Palliative Screening Scale attribute characteristics. SETTING/PARTICIPANTS: Online questionnaires with case vignettes were sent to 33 paediatric palliative care experts from Europe, the United States, Canada, Australia and New Zealand. RESULTS: The highest weightings among the five previously defined attributes were estimated life expectancy <12 months (40% of maximum score) and preferences of the child/parents received (24%). Trajectory of disease and impact on daily activities of the child, expected outcome of treatment directed at the disease and burden of treatment, and symptom or problem burden were weighted less. CONCLUSIONS: According to this second step of psychometric testing of the Paediatric Palliative Screening Scale, the strongest and most urgent necessity indicators for a palliative care approach are life expectancy and child/family preferences. These results are somewhat discrepant with results from the previous validation of the instrument as well as previous research findings.

8.
Children (Basel) ; 11(4)2024 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-38671702

RESUMO

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept.

9.
Br J Pain ; 18(3): 215-226, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38751563

RESUMO

Background: Breakthrough pain is common in life-limiting conditions and at end-of-life. Despite over 30 years of study, there is little consensus regarding the definition and characteristics of breakthrough pain. Objective: This study aims to update and expand a 2010 systematic review by Haugen and colleagues to identify (1) all definitions of breakthrough pain and (2) all descriptions and classifications of breakthrough pain reported by patients, caregivers, clinicians, and experts. Design: This rapid systematic review followed the Cochrane Rapid Review Methods Group guidelines. A protocol is published on PROSPERO (CRD42019155583). Data sources: CINAHL, MEDLINE, PsycINFO, and the Web of Science were searched for breakthrough pain terms from the inception dates of each database to 26th August 2022. Results: We identified 65 studies that included data on breakthrough pain definitions, descriptions, or classifications from patients (n = 30), clinicians (n = 6), and experts (n = 29), but none with data from caregivers. Most experts proposed that breakthrough pain was a sudden, severe, brief pain occurring in patients with adequately controlled mild-moderate background pain. However, definitions varied and there was no consensus. Pain characteristics were broadly similar across studies though temporal factors varied widely. Experts classified breakthrough pain into nociceptive, neuropathic, visceral, somatic, or mixed types. Patients with breakthrough pain commonly experienced depression, anxiety, and interference with daily life. Conclusions: Despite ongoing efforts, there is still no consensus on the definition of breakthrough pain. A compromise is needed on breakthrough pain nomenclature to collect reliable incidence and prevalence data and to inform further refinement of the construct.

10.
Pediatr Blood Cancer ; 60(7): 1073-82, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23512831

RESUMO

This guideline provides an approach to the prevention of acute antineoplastic-induced nausea and vomiting (AINV) in children. It was developed by an international, inter-professional panel using AGREE and CAN-IMPLEMENT methods. Evidence-based interventions that provide optimal AINV control in children receiving antineoplastic agents of high, moderate, low, and minimal emetogenicity are recommended. Recommendations are also made regarding selection of antiemetic agents for children who are unable to receive corticosteroids for AINV control, the role of aprepitant and optimal doses of antiemetic agents. Gaps in the evidence used to support the recommendations were identified. The contribution of this guideline to AINV control in children requires prospective evaluation.


Assuntos
Antieméticos/uso terapêutico , Antineoplásicos/efeitos adversos , Náusea/prevenção & controle , Neoplasias/tratamento farmacológico , Vômito/prevenção & controle , Criança , Medicina Baseada em Evidências , Humanos , Náusea/etiologia , Vômito/etiologia
11.
BMC Palliat Care ; 12(1): 20, 2013 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-23657092

RESUMO

BACKGROUND: The introduction of paediatric palliative care and referral to specialised teams still occurs late in the illness trajectory of children with life-limiting diseases. The aim of this ongoing multipart study was to develop a screening instrument for paediatricians that would improve the timely identification of children who could benefit from a palliative care approach. METHODS: We used a qualitative study approach with semi-structured interviews (Part 1) and a focus group discussion (Part 2) to define the domains and items of the screening instrument. Seven international paediatric palliative care experts from the UK, France, USA, and Canada took part in face-to-face interviews, and eleven paediatric health professionals from the University Children's Hospital, Zurich, participated in a subsequent focus group discussion. RESULTS: This preliminary phase of development and validation of the instrument revealed five domains relevant to identifying children with life-limiting diseases, who could benefit from palliative care: 1) trajectory of disease and impact on daily activities of the child; 2) expected outcome of disease-directed treatment and burden of treatment; 3) symptom and problem burden; 4) preferences of patient, parents or healthcare professional; and 5) estimated life expectancy. Where palliative care seems to be necessary, it would be introduced in a stepwise or graduated manner. CONCLUSIONS: This study is a preliminary report of the development of an instrument to facilitate timely introduction of palliative care in the illness trajectory of a severely ill child. The instrument demonstrated early validity and was evaluated as being a valuable approach towards effective paediatric palliative care.

12.
BMC Palliat Care ; 12(1): 43, 2013 Dec 11.
Artigo em Inglês | MEDLINE | ID: mdl-24330676

RESUMO

BACKGROUND: Children's palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. METHODS: The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007. RESULTS: 1590 diagnoses from children's hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions. CONCLUSION: The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care.

13.
BMC Palliat Care ; 12: 5, 2013 Feb 05.
Artigo em Inglês | MEDLINE | ID: mdl-23384400

RESUMO

BACKGROUND: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. METHODS: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. RESULTS: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. CONCLUSION: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.

14.
BMC Palliat Care ; 12(1): 18, 2013 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-23617814

RESUMO

BACKGROUND: Children's palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children's hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar. METHODS: Multi-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home. RESULTS: The exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children's palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices). CONCLUSIONS: Findings make a significant contribution to population-based needs assessment and commissioning methodology in children's palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used children's palliative care condition categories, which need revision in light of findings.

15.
Artigo em Inglês | MEDLINE | ID: mdl-37558392

RESUMO

OBJECTIVES: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK. METHODS: Two-part online survey. RESULTS: Survey 1: All 17 medical leads from hospital-based or hospice-based SPPC teams responded to the survey (100% response rate).Only six services met the NICE guidance for minimum SPPC team.All services reported providing symptom management, specialist nursing care, end-of-life planning and care, and supporting discharges and transfers to home or hospice for the child's final days-hours. Most services also provided care coordination (n=14), bereavement support (n=13), clinical psychology (n=10) and social work-welfare support (n=9). Thirteen had one or more posts partially or fully funded by a charity.Survey 2: Nine finance leads provided detailed resource/funding information, finding a range of statutory and charity funding sources. Only one of the National Health Service (NHS)-based services fully funded by the NHS. CONCLUSIONS: One-third of services met the minimum criteria of professional team as defined by NICE. Most services relied on charity funding to fund part or all of one professional post and only one NHS-based service received all its funding directly from the NHS.

16.
Blood ; 115(17): 3553-8, 2010 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-20061556

RESUMO

Chimeric fusion genes are highly prevalent in childhood acute lymphoblastic leukemia (ALL) and are mostly prenatal, early genetic events in the evolutionary trajectory of this cancer. ETV6-RUNX1-positive ALL also has multiple ( approximately 6 per case) copy number alterations (CNAs) as revealed by genome-wide single-nucleotide polymorphism arrays. Recurrent CNAs are probably "driver" events contributing critically to clonal diversification and selection, but at diagnosis, their developmental timing is "buried" in the leukemia's covert natural history. This conundrum can be resolved with twin pairs. We identified and compared CNAs in 5 pairs of monozygotic twins with concordant ETV6-RUNX1-positive ALL and 1 pair discordant for ETV6-RUNX1 positive ALL. We compared, within each pair, CNAs classified as potential "driver" or "passenger" mutations based upon recurrency and, where known, gene function. An average of 5.1 (range 3-11) CNAs (excluding immunoglobulin/T-cell receptor alterations) were identified per case. All "driver" CNAs (total of 32) were distinct within each of the 5 twin pairs with concordant ALL. "Driver" CNAs in another twin with ALL were all absent in the shared ETV6-RUNX1-positive preleukemic clone of her healthy co-twin. These data place all "driver" CNAs secondary to the prenatal gene fusion event and most probably postnatal in the sequential, molecular pathogenesis of ALL.


Assuntos
Dosagem de Genes , Estudo de Associação Genômica Ampla , Polimorfismo de Nucleotídeo Único , Leucemia-Linfoma Linfoblástico de Células Precursoras/genética , Gêmeos Monozigóticos , Subunidade alfa 2 de Fator de Ligação ao Core/genética , Subunidade alfa 2 de Fator de Ligação ao Core/metabolismo , Feminino , Humanos , Masculino , Mutação , Análise de Sequência com Séries de Oligonucleotídeos , Proteínas de Fusão Oncogênica/genética , Proteínas de Fusão Oncogênica/metabolismo , Leucemia-Linfoma Linfoblástico de Células Precursoras/metabolismo
17.
Children (Basel) ; 9(3)2022 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-35327716

RESUMO

The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care.

18.
NIHR Open Res ; 2: 37, 2022 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-35935675

RESUMO

Background: Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The current National Institute for Health and Care Excellence (NICE) guidance provides recommendations about what should be offered, but these are based on low quality evidence. The ENHANCE study aims to identify and investigate the different models of existing end-of-life care provision for infants, children, and young people in the UK, including an assessment of the outcomes and experiences for children and parents, and the cost implications to families and healthcare providers. Methods: This mixed methods study will use three linked workstreams and a cross-cutting health economics theme to examine end-of-life care models in three exemplar clinical settings: infant, children and young adult cancer services (PTCs), paediatric intensive care units (PICUs), and neonatal units (NNUs).Workstream 1 (WS1) will survey current practice in each setting and will result in an outline of the different models of care used. WS2 is a qualitative comparison of the experiences of staff, parents and patients across the different models identified. WS3 is a quantitative assessment of the outcomes, resource use and costs across the different models identified. Discussion: Results from this study will contribute to an understanding of how end-of-life care can provide the greatest benefit for children at the end of their lives. It will also allow us to understand the likely benefits of additional funding in end-of-life care in terms of patient outcomes.

19.
Artigo em Inglês | MEDLINE | ID: mdl-35184039

RESUMO

BACKGROUND: Intranasal diamorphine is a potential treatment for breakthrough pain but few paediatric data are available to assist dose estimation. AIM: To determine an intranasal diamorphine dose in children through an understanding of pharmacokinetics. DESIGN: A systematic review of the literature was undertaken to seek diamorphine pharmacokinetic parameters in neonates, children and adults. Parenteral and enteral diamorphine bioavailability were reviewed with respect to formation of the major metabolite, morphine. Clinical data quantifying equianalgesic effects of diamorphine and morphine were reviewed. REVIEW SOURCES: PubMed (1960-2020); EMBASE (1980-2020); IPA (1973-2020) and original human research studies that reported diacetylmorphine and metabolite after any dose or route of administration. RESULTS: The systematic review identified 19 studies: 16 in adults and 1 in children and 2 neonatal reports. Details of study participants were extracted. Age ranged from premature neonates to 67 years and weight 1.4-88 kg. Intranasal diamorphine bioavailability was predicted as 50%. The equianalgesic intravenous conversion ratio of morphine:diamorphine was 2:1. There was heterogeneity between pharmacokinetic parameter estimates attributed to routes of administration, lack of size standardisation, methodology and pharmacokinetic analysis. Estimates of the pharmacokinetic parameters clearance and volume of distribution were reduced in neonates. There were insufficient paediatric data to characterise clearance or volume maturation of either diamorphine or its metabolites. CONCLUSIONS: We estimate equianalgesic ratios of intravenous morphine:diamorphine 2:1, intravenous morphine:intranasal diamorphine 1:1 and oral morphine:intranasal diamorphine of 1:3. These ratios are based on adult literature, but are reasonable for deciding on an initial dose of 0.1 mg/kg in children 4-13 years.

20.
Pediatr Blood Cancer ; 57(2): 191-8, 2011 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-21465637

RESUMO

This guideline provides clinicians caring for children with an approach to assessing the acute emetogenic potential of antineoplastic therapies. It was developed by an international, inter-professional panel of clinicians and researchers using AGREE and CAN-ADAPTE methods. The emetogenicity of antineoplastic agents was evaluated and ranked as high, moderate, low, or minimal. The emetogenicity of multiple-agent and multiple-day antineoplastic therapy was also classified. Gaps in the evidence used to underpin the guideline recommendations were identified. The contribution of this guideline to the prevention of antineoplastic-induced nausea and vomiting in individual children about to receive antineoplastic therapy requires prospective evaluation.


Assuntos
Antineoplásicos/efeitos adversos , Antineoplásicos/classificação , Náusea/prevenção & controle , Neoplasias/tratamento farmacológico , Vômito/prevenção & controle , Adolescente , Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/classificação , Criança , Pré-Escolar , Humanos , Lactente , Náusea/induzido quimicamente , Medição de Risco , Vômito/induzido quimicamente
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