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1.
Gastroenterology ; 165(1): 104-120, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36933623

RESUMEN

BACKGROUND & AIMS: Dysbiosis of gut microbiota is linked to the development of colorectal cancer (CRC). However, microbiota-based stratification of CRC tissue and how this relates to clinicomolecular characteristics and prognosis remains to be clarified. METHODS: Tumor and normal mucosa from 423 patients with stage I to IV CRC were profiled by bacterial 16S rRNA gene sequencing. Tumors were characterized for microsatellite instability (MSI), CpG island methylator phenotype (CIMP), APC, BRAF, KRAS, PIK3CA, FBXW7, SMAD4, and TP53 mutations, subsets for chromosome instability (CIN), mutation signatures, and consensus molecular subtypes (CMS). Microbial clusters were validated in an independent cohort of 293 stage II/III tumors. RESULTS: Tumors reproducibly stratified into 3 oncomicrobial community subtypes (OCSs) with distinguishing features: OCS1 (Fusobacterium/oral pathogens, proteolytic, 21%), right-sided, high-grade, MSI-high, CIMP-positive, CMS1, BRAF V600E, and FBXW7 mutated; OCS2 (Firmicutes/Bacteroidetes, saccharolytic, 44%), and OCS3 (Escherichia/Pseudescherichia/Shigella, fatty acid ß-oxidation, 35%) both left-sided and exhibiting CIN. OCS1 was associated with MSI-related mutation signatures (SBS15, SBS20, ID2, and ID7) and OCS2 and OCS3 with SBS18 related to damage by reactive oxygen species. Among stage II/III patients, OCS1 and OCS3 both had poorer overall survival compared with OCS2 for microsatellite stable tumors (multivariate hazard ratio [HR], 1.85; 95% confidence interval [CI], 1.15-2.99; P = .012; and HR, 1.52; 95% CI 1.01-2.29; P = .044, respectively) and left-sided tumors (multivariate HR, 2.66; 95% CI, 1.45-4.86; P = .002; and HR, 1.76; 95% CI, 1.03-3.02; P = .039, respectively). CONCLUSIONS: OCS classification stratified CRCs into 3 distinct subgroups with different clinicomolecular features and outcomes. Our findings provide a framework for a microbiota-based stratification of CRC to refine prognostication and to inform the development of microbiota-targeted interventions.


Asunto(s)
Neoplasias Colorrectales , Proteínas Proto-Oncogénicas B-raf , Humanos , Pronóstico , Proteína 7 que Contiene Repeticiones F-Box-WD/genética , Proteínas Proto-Oncogénicas B-raf/genética , ARN Ribosómico 16S , Metilación de ADN , Mutación , Inestabilidad de Microsatélites , Inestabilidad Cromosómica , Fenotipo , Neoplasias Colorrectales/patología , Islas de CpG
2.
BMC Pregnancy Childbirth ; 23(1): 480, 2023 Jun 30.
Artículo en Inglés | MEDLINE | ID: mdl-37391688

RESUMEN

BACKGROUND: Despite progress, stillbirth rates in many high- and upper-middle income countries remain high, and the majority of these deaths are preventable. We introduce the Ending Preventable Stillbirths (EPS) Scorecard for High- and Upper Middle-Income Countries, a tool to track progress against the Lancet's 2016 EPS Series Call to Action, fostering transparency, consistency and accountability. METHODS: The Scorecard for EPS in High- and Upper-Middle Income Countries was adapted from the Scorecard for EPS in Low-Income Countries, which includes 20 indicators to track progress against the eight Call to Action targets. The Scorecard for High- and Upper-Middle Income Countries includes 23 indicators tracking progress against these same Call to Action targets. For this inaugural version of the Scorecard, 13 high- and upper-middle income countries supplied data. Data were collated and compared between and within countries. RESULTS: Data were complete for 15 of 23 indicators (65%). Five key issues were identified: (1) there is wide variation in stillbirth rates and related perinatal outcomes, (2) definitions of stillbirth and related perinatal outcomes vary widely across countries, (3) data on key risk factors for stillbirth are often missing and equity is not consistently tracked, (4) most countries lack guidelines and targets for critical areas for stillbirth prevention and care after stillbirth and have not set a national stillbirth rate target, and (5) most countries do not have mechanisms in place for reduction of stigma or guidelines around bereavement care. CONCLUSIONS: This inaugural version of the Scorecard for High- and Upper-Middle Income Countries highlights important gaps in performance indicators for stillbirth both between and within countries. The Scorecard provides a basis for future assessment of progress and can be used to help hold individual countries accountable, especially for reducing stillbirth inequities in disadvantaged groups.


Asunto(s)
Aflicción , Mortinato , Femenino , Humanos , Embarazo , Países en Desarrollo , Factores de Riesgo , Mortinato/epidemiología
3.
BMC Pregnancy Childbirth ; 22(1): 634, 2022 Aug 10.
Artículo en Inglés | MEDLINE | ID: mdl-35948884

RESUMEN

BACKGROUND: Around 1 in 150 babies are stillborn or die in the first month of life in the UK. Most women conceive again, and subsequent pregnancies are often characterised by feelings of stress and anxiety, persisting beyond the birth. Psychological distress increases the risk of poor pregnancy outcomes and longer-term parenting difficulties. Appropriate emotional support in subsequent pregnancies is key to ensure the wellbeing of women and families. Substantial variability in existing care has been reported, including fragmentation and poor communication. A new care package improving midwifery continuity and access to emotional support during subsequent pregnancy could improve outcomes. However, no study has assessed the feasibility of a full-scale trial to test effectiveness in improving outcomes and cost-effectiveness for the National Health Service (NHS). METHODS: A prospective, mixed-methods pre-and post-cohort study, in two Northwest England Maternity Units. Thirty-eight women, (≤ 20 weeks' gestation, with a previous stillbirth, or neonatal death) were offered the study intervention (allocation of a named midwife care coordinator and access to group and online support). Sixteen women receiving usual care were recruited in the 6 months preceding implementation of the intervention. Outcome data were collected at 2 antenatal and 1 postnatal visit(s). Qualitative interviews captured experiences of care and research processes with women (n = 20), partners (n = 5), and midwives (n = 8). RESULTS: Overall recruitment was 90% of target, and 77% of women completed the study. A diverse sample reflected the local population, but non-English speaking was a barrier to participation. Study processes and data collection methods were acceptable. Those who received increased midwifery continuity valued the relationship with the care coordinator and perceived positive impacts on pregnancy experiences. However, the anticipated increase in antenatal continuity for direct midwife contacts was not observed for the intervention group. Take-up of in-person support groups was also limited. CONCLUSIONS: Women and partners welcomed the opportunity to participate in research. Continuity of midwifery care was supported as a beneficial strategy to improve care and support in pregnancy after the death of a baby by both parents and professionals. Important barriers to implementation included changes in leadership, service pressures and competing priorities. TRIAL REGISTRATION: ISRCTN17447733 first registration 13/02/2018.


Asunto(s)
Servicios de Salud Materna , Partería , Muerte Perinatal , Estudios de Cohortes , Vías Clínicas , Estudios de Factibilidad , Femenino , Humanos , Recién Nacido , Partería/métodos , Muerte Perinatal/prevención & control , Embarazo , Atención Prenatal/métodos , Estudios Prospectivos , Medicina Estatal , Mortinato/psicología
4.
BMC Pregnancy Childbirth ; 21(1): 840, 2021 Dec 22.
Artículo en Inglés | MEDLINE | ID: mdl-34937548

RESUMEN

BACKGROUND: The COVID-19 pandemic poses an unprecedented risk to the global population. Maternity care in the UK was subject to many iterations of guidance on how best to reconfigure services to keep women, their families and babies, and healthcare professionals safe. Parents who experience a pregnancy loss or perinatal death require particular care and support. PUDDLES is an international collaboration investigating the experiences of recently bereaved parents who suffered a late miscarriage, stillbirth, or neonatal death during the global COVID-19 pandemic, in seven countries. In this study, we aim to present early findings from qualitative work undertaken with recently bereaved parents in the United Kingdom about how access to healthcare and support services was negotiated during the pandemic. METHODS: In-depth semi-structured interviews were undertaken with parents (N = 24) who had suffered a late miscarriage (n = 5; all mothers), stillbirth (n = 16; 13 mothers, 1 father, 1 joint interview involving both parents), or neonatal death (n = 3; all mothers). Data were analysed using a template analysis with the aim of investigating bereaved parents' access to services, care, and networks of support, during the pandemic after their bereavement. RESULTS: All parents had experience of utilising reconfigured maternity and/or neonatal, and bereavement care services during the pandemic. The themes utilised in the template analysis were: 1) The Shock & Confusion Associated with Necessary Restrictions to Daily Life; 2) Fragmented Care and Far Away Families; 3) Keeping Safe by Staying Away; and 4) Impersonal Care and Support Through a Screen. Results suggest access to maternity, neonatal, and bereavement care services were all significantly reduced, and parents' experiences were notably affected by service reconfigurations. CONCLUSIONS: Our findings, whilst preliminary, are important to document now, to help inform care and service provision as the pandemic continues and to provide learning for ongoing and future health system shocks. We draw conclusions on how to enable development of safe and appropriate services during this pandemic and any future health crises, to best support parents who experience a pregnancy loss or whose babies die.


Asunto(s)
Aborto Espontáneo/psicología , Aflicción , COVID-19/psicología , Pesar , Padres/psicología , Muerte Perinatal , Mortinato/psicología , Continuidad de la Atención al Paciente/normas , Femenino , Accesibilidad a los Servicios de Salud/normas , Humanos , Recién Nacido , Masculino , Embarazo , Datos Preliminares , Sistemas de Apoyo Psicosocial , Investigación Cualitativa , Cuarentena/psicología , SARS-CoV-2 , Reino Unido/epidemiología
5.
Birth ; 48(3): 366-374, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-33738843

RESUMEN

BACKGROUND: Stillbirth, the death of a baby before birth, is associated with significant psychological and social consequences that can be mitigated by respectful and supportive bereavement care. The absence of high-level evidence to support the broad scope of perinatal bereavement practices means that offering a range of options identified as valued by parents has become an important indicator of care quality. This study aimed to describe bereavement care practices offered to parents across different high-income and middle-income countries. METHODS: An online survey of parents of stillborn babies was conducted between December 2014 and February 2015. Frequencies of nine practices were compared between high-income and middle-income countries. Differences in proportions of reported practices and their associated odds ratios were calculated to compare high-income and middle-income countries. RESULTS: Over three thousand parents (3041) with a self-reported stillbirth in the preceding five years from 40 countries responded. Fifteen countries had atleast 40 responses. Significant differences in the prevalence of offering nine bereavement care practices were reported by women in high-income countries (HICs) compared with women in middle-income countries (MICs). All nine practices were reported to occur significantly more frequently by women in HICs, including opportunity to see and hold their baby (OR = 4.8, 95% CI 4.0-5.9). The widespread occurrence of all nine practices was reported only for The Netherlands. CONCLUSIONS: Bereavement care after stillbirth varies between countries. Future research should look at why these differences occur, their impact on parents, and whether differences should be addressed, particularly how to support effective communication, decision-making, and follow-up care.


Asunto(s)
Aflicción , Mortinato , Países en Desarrollo , Femenino , Humanos , Padres , Embarazo , Mortinato/epidemiología , Encuestas y Cuestionarios
6.
Br J Cancer ; 123(Suppl 1): 28-35, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-33293673

RESUMEN

The type of patients with stage III non-small-cell lung cancer (NSCLC) selected for concurrent chemoradiotherapy (cCRT) varies between and within countries, with higher-volume centres treating patients with more co-morbidities and higher-stage disease. However, in spite of these disease characteristics, these patients have improved overall survival, suggesting that there are additional approaches that should be optimised and potentially standardised. This paper aims to review the current knowledge and best practices surrounding treatment for patients eligible for cCRT. Initially, this includes timely acquisition of the full diagnostic workup for the multidisciplinary team to comprehensively assess a patient for treatment, as well as imaging scans, patient history, lung function and genetic tests. Such information can provide prognostic information on how a patient will tolerate their cCRT regimen, and to perhaps limit the use of additional supportive care, such as steroids, which could impact on further treatments, such as immunotherapy. Furthermore, knowledge of the safety profile of individual double-platinum chemotherapy regimens and the technological advances in radiotherapy could aid in optimising patients for cCRT treatment, improving its efficacy whilst minimising its toxicities. Finally, providing patients with preparatory and ongoing support with input from dieticians, palliative care professionals, respiratory and care-of-the-elderly physicians during treatment may also help in more effective treatment delivery, allowing patients to achieve the maximum potential from their treatments.


Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Carcinoma de Pulmón de Células no Pequeñas/tratamiento farmacológico , Quimioradioterapia/efectos adversos , Pronóstico , Carcinoma de Pulmón de Células no Pequeñas/patología , Carcinoma de Pulmón de Células no Pequeñas/radioterapia , Carcinoma de Pulmón de Células no Pequeñas/cirugía , Terapia Combinada , Humanos , Estadificación de Neoplasias , Resultado del Tratamiento
7.
Mol Ther ; 26(2): 510-523, 2018 02 07.
Artículo en Inglés | MEDLINE | ID: mdl-29175157

RESUMEN

Effective gene delivery to the CNS by intravenously administered adeno-associated virus (AAV) vectors requires crossing the blood-brain barrier (BBB). To achieve therapeutic CNS transgene expression, high systemic vector doses are often required, which poses challenges such as scale-up costs and dose-dependent hepatotoxicity. To improve the specificity and efficiency of CNS gene transfer, a better understanding of the structural features that enable AAV transit across the BBB is needed. We generated a combinatorial domain swap library using AAV1, a serotype that does not traverse the vasculature, and AAVrh.10, which crosses the BBB in mice. We then screened individual variants by phylogenetic and structural analyses and subsequently conducted systemic characterization in mice. Using this approach, we identified key clusters of residues on the AAVrh.10 capsid that enabled transport across the brain vasculature and widespread neuronal transduction in mice. Through rational design, we mapped a minimal footprint from AAVrh.10, which, when grafted onto AAV1, confers the aforementioned CNS phenotype while diminishing vascular and hepatic transduction through an unknown mechanism. Functional mapping of this capsid surface footprint provides a roadmap for engineering synthetic AAV capsids for efficient CNS gene transfer with an improved safety profile.


Asunto(s)
Barrera Hematoencefálica/metabolismo , Barrera Hematoencefálica/virología , Dependovirus/fisiología , Dependovirus/ultraestructura , Animales , Transporte Biológico , Encéfalo/metabolismo , Proteínas de la Cápside/química , Proteínas de la Cápside/genética , Dependovirus/clasificación , Expresión Génica , Técnicas de Transferencia de Gen , Ingeniería Genética , Vectores Genéticos/administración & dosificación , Humanos , Ratones , Modelos Moleculares , Miocardio/metabolismo , Especificidad de Órganos , Filogenia , Unión Proteica , Distribución Tisular , Transducción Genética , Transgenes
8.
Lancet ; 387(10018): 604-616, 2016 Feb 06.
Artículo en Inglés | MEDLINE | ID: mdl-26794073

RESUMEN

Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional surveillance during subsequent pregnancies. Indirect and intangible costs of stillbirth are extensive and are usually met by families alone. This issue is particularly onerous for those with few resources. Negative effects, particularly on parental mental health, might be moderated by empathic attitudes of care providers and tailored interventions. The value of the baby, as well as the associated costs for parents, families, care providers, communities, and society, should be considered to prevent stillbirths and reduce associated morbidity.


Asunto(s)
Mortinato/economía , Costos y Análisis de Costo , Salud de la Familia , Femenino , Apoyo Financiero , Pesar , Costos de la Atención en Salud , Gastos en Salud , Personal de Salud/psicología , Humanos , Renta , Padres/psicología , Embarazo , Atención Prenatal/economía , Años de Vida Ajustados por Calidad de Vida , Seguridad Social , Apoyo Social , Estereotipo , Mortinato/psicología , Estrés Psicológico/etiología
9.
Lancet ; 387(10019): 691-702, 2016 Feb 13.
Artículo en Inglés | MEDLINE | ID: mdl-26794070

RESUMEN

Variation in stillbirth rates across high-income countries and large equity gaps within high-income countries persist. If all high-income countries achieved stillbirth rates equal to the best performing countries, 19,439 late gestation (28 weeks or more) stillbirths could have been avoided in 2015. The proportion of unexplained stillbirths is high and can be addressed through improvements in data collection, investigation, and classification, and with a better understanding of causal pathways. Substandard care contributes to 20-30% of all stillbirths and the contribution is even higher for late gestation intrapartum stillbirths. National perinatal mortality audit programmes need to be implemented in all high-income countries. The need to reduce stigma and fatalism related to stillbirth and to improve bereavement care are also clear, persisting priorities for action. In high-income countries, a woman living under adverse socioeconomic circumstances has twice the risk of having a stillborn child when compared to her more advantaged counterparts. Programmes at community and country level need to improve health in disadvantaged families to address these inequities.


Asunto(s)
Países Desarrollados/estadística & datos numéricos , Mortinato/epidemiología , Actitud Frente a la Salud , Exactitud de los Datos , Atención a la Salud/normas , Femenino , Edad Gestacional , Salud Global/estadística & datos numéricos , Política de Salud , Disparidades en Atención de Salud/estadística & datos numéricos , Cuidados Paliativos al Final de la Vida/normas , Humanos , Renta , Cooperación Internacional , Mortalidad Perinatal , Atención Posnatal/normas , Guías de Práctica Clínica como Asunto , Embarazo , Atención Prenatal/normas , Factores de Riesgo , Estereotipo , Mortinato/psicología
10.
BMC Pregnancy Childbirth ; 17(1): 333, 2017 Oct 02.
Artículo en Inglés | MEDLINE | ID: mdl-28969596

RESUMEN

BACKGROUND: Following a perinatal death, a formal standardised multi-disciplinary review should take place, to learn from the death of a baby and facilitate improvements in future care. It has been recommended that bereaved parents should be offered the opportunity to give feedback on the care they have received and integrate this feedback into the perinatal mortality review process. However, the MBRRACE-UK Perinatal Confidential Enquiry (2015) found that only one in 20 cases parental concerns were included in the review. Although guidance suggests parental opinion should be sought, little evidence exists on how this may be incorporated into the perinatal mortality review process. The purpose of the PARENTS study was to investigate bereaved parents' views on involvement in the perinatal mortality review process. METHODS: A semi-structured focus group of 11 bereaved parents was conducted in South West England. A purposive sampling technique was utilised to recruit a diverse sample of women and their partners who had experienced a perinatal death more than 6 months prior to the study. A six-stage thematic analysis was followed to explore parental perceptions and expectations of the perinatal mortality review process. RESULTS: Four over-arching themes emerged from the analysis: transparency; flexibility combined with specificity; inclusivity; and a positive approach. It was evident that the majority of parents were supportive of their involvement in the perinatal mortality review process and they wanted to know the outcome of the meeting. It emerged that an individualised approach should be taken to allow flexibility on when and how they could contribute to the process. The emotional aspects of care should be considered as well as the clinical care. Parents identified that the whole care pathway should be examined during the review including antenatal, postnatal, and neonatal and community based care. They agreed that there should be an opportunity for parents to give feedback on both good and poor aspects of their care. CONCLUSION: Parents were unaware that a review of their baby's death took place in the hospital. Parental involvement in the perinatal mortality review process would promote an open culture in the healthcare system and learning from adverse events including deaths. Further research should focus on designing and evaluating a perinatal mortality review process where parental feedback will be integral.


Asunto(s)
Servicios de Salud Materna/normas , Evaluación de Procesos y Resultados en Atención de Salud/métodos , Padres/psicología , Participación del Paciente/psicología , Muerte Perinatal , Mortinato/psicología , Adulto , Inglaterra , Femenino , Cuidados Paliativos al Final de la Vida/psicología , Cuidados Paliativos al Final de la Vida/normas , Humanos , Recién Nacido , Masculino , Embarazo , Investigación Cualitativa
11.
BMC Pregnancy Childbirth ; 16: 16, 2016 Jan 25.
Artículo en Inglés | MEDLINE | ID: mdl-26810220

RESUMEN

BACKGROUND: 2.7 million babies were stillborn in 2015 worldwide; behind these statistics lie the experiences of bereaved parents. The first Lancet series on stillbirth in 2011 described stillbirth as one of the "most shamefully neglected" areas of public health, recommended improving interaction between families and frontline caregivers and made a plea for increased investment in relevant research. METHODS: A systematic review of qualitative, quantitative and mixed-method studies researching parents and healthcare professionals experiences of care after stillbirth in high-income westernised countries (Europe, North America, Australia and South Africa) was conducted. The review was designed to inform research, training and improve care for parents who experience stillbirth. RESULTS: Four thousand four hundred eighty eight abstracts were identified; 52 studies were eligible for inclusion. Synthesis and quantitative aggregation (meta-summary) was used to extract findings and calculate frequency effect sizes (FES%) for each theme (shown in italics), a measure of the prevalence of that finding in the included studies. Researchers' areas of interest may influence reporting of findings in the literature and result in higher FES sizes, such as; support memory making (53%) and fathers have different needs (18%). Other parental findings were more unexpected; Parents want increased public awareness (20%) and for stillbirth care to be prioritised (5%). Parental findings highlighted lessons for staff; prepare parents for vaginal birth (23%), discuss concerns (13%), give options & time (20%), privacy not abandonment (30%), tailored post-mortem discussions (20%) and post-natal information (30%). Parental and staff findings were often related; behaviours and actions of staff have a memorable impact on parents (53%) whilst staff described emotional, knowledge and system-based barriers to providing effective care (100%). Parents reported distress being caused by midwives hiding behind 'doing' and ritualising guidelines whilst staff described distancing themselves from parents and focusing on tasks as coping strategies. Parents and staff both identified the need for improved training (parents 25% & staff 57%); continuity of care (parents 15% & staff 36%); supportive systems & structures (parents 50%); and clear care pathways (parents 5%). CONCLUSIONS: Parents' and healthcare workers' experiences of stillbirth can inform training, improve the provision of care and highlight areas for future research.


Asunto(s)
Personal de Salud/psicología , Padres/psicología , Mortinato/psicología , Adulto , Australia , Aflicción , Europa (Continente) , Femenino , Humanos , Masculino , América del Norte , Embarazo , Investigación Cualitativa , Sudáfrica
12.
BMC Pregnancy Childbirth ; 16: 9, 2016 Jan 19.
Artículo en Inglés | MEDLINE | ID: mdl-26785915

RESUMEN

BACKGROUND: Despite improvements in maternity healthcare services over the last few decades, more than 2.7 million babies worldwide are stillborn each year. The global health agenda is silent about stillbirth, perhaps, in part, because its wider impact has not been systematically analysed or understood before now across the world. Our study aimed to systematically review, evaluate and summarise the current evidence regarding the psychosocial impact of stillbirth to parents and their families, with the aim of improving guidance in bereavement care worldwide. METHODS: Systematic review and meta-summary (quantitative aggregation of qualitative findings) of quantitative, qualitative, and mixed-methods studies. All languages and countries were included. RESULTS: Two thousand, six hundred and nineteen abstracts were identified; 144 studies were included. Frequency effect sizes (FES %) were calculated for each theme, as a measure of their prevalence in the literature. Themes ranged from negative psychological symptoms post bereavement (77 · 1) and in subsequent pregnancies (27 · 1), to disenfranchised grief (31 · 2), and incongruent grief (28 · 5), There was also impact on siblings (23 · 6) and on the wider family (2 · 8). They included mixed-feelings about decisions made when the baby died (12 · 5), avoidance of memories (13 · 2), anxiety over other children (7 · 6), chronic pain and fatigue (6 · 9), and a different approach to the use of healthcare services (6 · 9). Some themes were particularly prominent in studies of fathers; grief suppression (avoidance)(18 · 1), employment difficulties, financial debt (5 · 6), and increased substance use (4 · 2). Others found in studies specific to mothers included altered body image (3 · 5) and impact on quality of life (2 · 1). Counter-intuitively, Some themes had mixed connotations. These included parental pride in the baby (5 · 6), motivation for engagement in healthcare improvement (4 · 2) and changed approaches to life and death, self-esteem, and own identity (25 · 7). In studies from low/middle income countries, stigmatisation (13 · 2) and pressure to prioritise or delay conception (9) were especially prevalent. CONCLUSION: Experiencing the birth of a stillborn child is a life-changing event. The focus of the consequences may vary with parent gender and country. Stillbirth can have devastating psychological, physical and social costs, with ongoing effects on interpersonal relationships and subsequently born children. However, parents who experience the tragedy of stillbirth can develop resilience and new life-skills and capacities. Future research should focus on developing interventions that may reduce the psychosocial cost of stillbirth.


Asunto(s)
Pesar , Culpa , Esperanza , Estigma Social , Mortinato/psicología , Adaptación Psicológica , Adulto , Padre/psicología , Femenino , Humanos , Recién Nacido , Masculino , Madres/psicología , Embarazo , Investigación Cualitativa , Calidad de Vida
13.
BMC Pregnancy Childbirth ; 16(1): 376, 2016 11 25.
Artículo en Inglés | MEDLINE | ID: mdl-27887578

RESUMEN

BACKGROUND: Stillbirths and neonatal deaths are devastating events for both parents and clinicians and are global public health concerns. Careful clinical management after these deaths is required, including appropriate investigation and assessment to determine cause (s) to prevent future losses, and to improve bereavement care for families. An educational programme for health care professionals working in maternal and child health has been designed to address these needs according to the Perinatal Society of Australia and New Zealand Guideline for Perinatal Mortality: IMproving Perinatal mortality Review and Outcomes Via Education (IMPROVE). The programme has a major focus on stillbirth and is delivered as six interactive skills-based stations. We aimed to determine participants' pre- and post-programme knowledge of and confidence in the management of perinatal deaths, along with satisfaction with the programme. We also aimed to determine suitability for international use. METHODS: The IMPROVE programme was delivered to health professionals in maternity hospitals in all seven Australian states and territories and modified for use internationally with piloting in Vietnam, Fiji, and the Netherlands (with the assistance of the International Stillbirth Alliance, ISA). Modifications were made to programme materials in consultation with local teams and included translation for the Vietnam programme. Participants completed pre- and post-programme evaluation questionnaires on knowledge and confidence on six key components of perinatal death management as well as a satisfaction questionnaire. RESULTS: Over the period May 2012 to May 2015, 30 IMPROVE workshops were conducted, including 26 with 758 participants in Australia and four with 136 participants internationally. Evaluations showed a significant improvement between pre- and post-programme knowledge and confidence in all six stations and overall, and a high degree of satisfaction in all settings. CONCLUSIONS: The IMPROVE programme has been well received in Australia and in three different international settings and is now being made available through ISA. Future research is required to determine whether the immediate improvements in knowledge are sustained with less causes of death being classified as unknown, changes in clinical practice and improvement in parents' experiences with care. The suitability for this programme in low-income countries also needs to be established.


Asunto(s)
Personal de Salud/educación , Atención Perinatal/normas , Muerte Perinatal , Guías de Práctica Clínica como Asunto , Evaluación de Programas y Proyectos de Salud , Australia , Femenino , Fiji , Humanos , Recién Nacido , Países Bajos , Embarazo , Mortinato/psicología , Encuestas y Cuestionarios , Vietnam
15.
Eur J Health Econ ; 2024 Feb 25.
Artículo en Inglés | MEDLINE | ID: mdl-38403720

RESUMEN

BACKGROUND: Policymakers use clinical and cost-effectiveness evidence to support decisions about health service commissioning. In England, the National Institute for Health and Care Excellence (NICE) recommend that in cost-effectiveness analyses "effectiveness" is measured as quality-adjusted life years (QALYs), derived from health utility values. The impact of perinatal death (stillbirth/neonatal death) on parents' health utility is currently unknown. This knowledge would improve the robustness of cost-effectiveness evidence for policymakers. OBJECTIVE: This study aimed to estimate the impact of perinatal death on parents' health utility. METHODS: An online survey conducted with mothers and fathers in England who experienced a perinatal death. Participants reported how long ago their baby died and whether they/their partner subsequently became pregnant again. They were asked to rate their health on the EQ-5D-5L instrument (generic health measure). EQ-5D-5L responses were used to calculate health utility values. These were compared with age-matched values for the general population to estimate a utility shortfall (i.e. health loss) associated with perinatal death. RESULTS: There were 256 survey respondents with a median age of 40 years (IQR 26-40). Median time since death was 27 months (IQR 8-71). The mean utility value of the sample was 0.774 (95% CI 0.752-0.796). Utility values in the sample were 13% lower than general population values (p < 0.05). Over 10 years, this equated to a loss of 1.1 QALYs. This reduction in health utility was driven by anxiety and depression. CONCLUSIONS: Perinatal death has important and long-lasting health impacts on parents. Mental health support following perinatal bereavement is especially important.

16.
BMJ Open ; 14(1): e082835, 2024 01 18.
Artículo en Inglés | MEDLINE | ID: mdl-38238057

RESUMEN

INTRODUCTION: In the UK, 1600 babies die every year before, during or immediately after birth at 20-28 weeks' gestation. This bereavement has a similar impact on parental physical and psychological well-being to late stillbirth (>28 weeks' gestation). Improved understanding of potentially modifiable risk factors for late stillbirth (including supine going-to-sleep position) has influenced international clinical practice. Information is now urgently required to similarly inform clinical practice and aid decision-making by expectant mothers/parents, addressing inequalities in pregnancy loss between 20 and 28 weeks. METHODS AND ANALYSIS: This study focuses on what portion of risk of pregnancy loss 20-28 weeks' gestation is associated with exposures amenable to public health campaigns/antenatal care adaptation. A case-control study of non-anomalous singleton baby loss (via miscarriage, stillbirth or early neonatal death) 20+0 to 27+6 (n=316) and randomly selected control pregnancies (2:1 ratio; n=632) at group-matched gestations will be conducted. Data is collected via participant recall (researcher-administered questionnaire) and extraction from contemporaneous medical records. Unadjusted/confounder-adjusted ORs will be calculated. Exposures associated with early stillbirth at OR≥1.5 will be detectable (p<0.05, ß>0.80) assuming exposure prevalence of 30%-60%. ETHICS AND DISSEMINATION: NHS research ethical approval has been obtained from the London-Seasonal research ethics committee (23/LO/0622). The results will be presented at international conferences and published in peer-reviewed open-access journals. Information from this study will enable development of antenatal care and education for healthcare professionals and pregnant people to reduce risk of early stillbirth. TRIAL REGISTRATION NUMBER: NCT06005272.


Asunto(s)
Aborto Espontáneo , Mortinato , Recién Nacido , Humanos , Femenino , Embarazo , Mortinato/epidemiología , Mortinato/psicología , Estudios de Casos y Controles , Madres , Atención Prenatal , Encuestas y Cuestionarios
17.
Front Glob Womens Health ; 5: 1347388, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38449695

RESUMEN

Introduction: The COVID-19 pandemic posed a significant lifecourse rupture, not least to those who had specific physical vulnerabilities to the virus, but also to those who were suffering with mental ill health. Women and birthing people who were pregnant, experienced a perinatal bereavement, or were in the first post-partum year (i.e., perinatal) were exposed to a number of risk factors for mental ill health, including alterations to the way in which their perinatal care was delivered. Methods: A consensus statement was derived from a cross-disciplinary collaboration of experts, whereby evidence from collaborative work on perinatal mental health during the COVID-19 pandemic was synthesised, and priorities were established as recommendations for research, healthcare practice, and policy. Results: The synthesis of research focused on the effect of the COVID-19 pandemic on perinatal health outcomes and care practices led to three immediate recommendations: what to retain, what to reinstate, and what to remove from perinatal mental healthcare provision. Longer-term recommendations for action were also made, categorised as follows: Equity and Relational Healthcare; Parity of Esteem in Mental and Physical Healthcare with an Emphasis on Specialist Perinatal Services; and Horizon Scanning for Perinatal Mental Health Research, Policy, & Practice. Discussion: The evidence base on the effect of the pandemic on perinatal mental health is growing. This consensus statement synthesises said evidence and makes recommendations for a post-pandemic recovery and re-build of perinatal mental health services and care provision.

20.
Pulm Ther ; 9(3): 367-375, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37415030

RESUMEN

INTRODUCTION: Previous studies in 2018 and 2022 have suggested increasing inpatient burden of pneumothorax and widespread variation in management. Local trends have never been elucidated. Northumbria Healthcare NHS Foundation Trust (NHCT) has a well-established pleural service, serving just over 600,000. Thus, we set up a local retrospective study to look at trends in pneumothorax presentation, management strategies, length of stay, and recurrence. METHODS: A coding search for 'pneumothorax' was performed for all patients attending NHCT between 2010 and 2020 was performed with local Caldicott approval. A total of 1840 notes were analysed to exclude iatrogenic, traumatic, and paediatric events. After excluding those cases, 580 remained for further analysis, consisting of 183 primary pneumothoraces (PSP) and 397 secondary pneumothoraces (SSP). RESULTS: Median age for PSP was 26.5 years (IQR 17) with 69% male, and for SSP 68 years (IQR 11.5), 62% male; 23.5% of PSP and 8.6% of SSP were never smokers. The proportion of smokers and ex-smokers has not really changed over time: > 65% every year have been smokers or ex-smokers. Yearly pneumothorax incidence shows a downward trend for PSP but upwards for SSP. Median length of stay (LoS) for PSP was 2 days (IQR 2), and SSP 5 days (IQR 8), with a clear downward trend. From 2010 to 2015 > 50% PSP were managed with drain, but in 2019-2020 at least 50% managed conservatively, with a significant reduction in aspiration. Trends of recurrence for PSP are increasing, whereas for SSP is decreasing. Seventy-six (20 PSP, 56 SSP) went for surgery at the index time with 5.3% recurrence (20% recurrence in those without surgery). CONCLUSIONS: This is the first known analysis of pneumothorax trends in a large trust in the northeast of England. The data in this study have certain limitations, including the lack of information on the size of pneumothorax and frailty indicators that may influence the decision for conservative management. Additionally, there is a reliance on clinical coding, which can introduce potential inaccuracies, and not all patient notes were accessible for analysis. Updated larger datasets should help elucidate trends better.

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