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Paediatric palliative care

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https://www.readbyqxmd.com/read/29346304/-total-pain-in-children-with-severe-neurological-impairment
#1
REVIEW
Timothy A Warlow, Richard D W Hain
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service...
January 18, 2018: Children
https://www.readbyqxmd.com/read/29333484/approaching-the-third-decade-of-paediatric-palliative-oncology-investigation-historical-progress-and-future-directions
#2
Abby R Rosenberg, Joanne Wolfe
Paediatric palliative care (PPC) endeavours to alleviate the suffering and improve the quality of life of children with serious illnesses and their families. In the past two decades since WHO defined PPC and called for its inclusion in paediatric oncology care, rigorous investigation has provided important insights. For example, the first decade of research focused on end-of-life experiences of the child and the family, underscoring the high prevalence of symptom burden, the barriers to parent-provider concordance with regards to prognosis, as well as the need for bereavement supports...
September 2017: Lancet Child & Adolescent Health
https://www.readbyqxmd.com/read/29316996/a-randomised-trial-of-early-palliative-care-for-maternal-stress-in-infants-prenatally-diagnosed-with-single-ventricle-heart-disease
#3
Hayley S Hancock, Ken Pituch, Karen Uzark, Priya Bhat, Carly Fifer, Maria Silveira, Sunkyung Yu, Suzanne Welch, Janet Donohue, Ray Lowery, Ranjit Aiyagari
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge...
January 10, 2018: Cardiology in the Young
https://www.readbyqxmd.com/read/29301717/-the-challenge-of-complex-chronicity-and-palliative-care-in-paediatrics
#4
Sergi Navarro Vilarrubí
No abstract text is available yet for this article.
January 2018: Anales de Pediatría: Publicación Oficial de la Asociación Española de Pediatría (A.E.P.)
https://www.readbyqxmd.com/read/29300861/asanguineous-priming-of-miniaturized-paediatric-cardiopulmonary-bypass-circuits-for-congenital-heart-surgery-independent-predictors-associated-with-transfusion-requirements-and-effects-on-postoperative-morbidity
#5
Wolfgang Boettcher, Matthias Redlin, Frank Dehmel, Katharina Graefe, Mi-Young Cho, Helmut Habazettl, Marian Kukucka
OBJECTIVES: In paediatric cardiac surgery, body weight-adjusted miniaturized cardiopulmonary bypass (CPB) circuits within a comprehensive blood-sparing approach can reduce transfusion requirements. Haemodilution resulting from mixing the patient's blood with a CPB crystalloid solution may be reduced to the extent that asanguineous priming becomes possible. Therefore, we adopted asanguineous priming in our clinical routine. Our goal was to report the effects of asanguineous priming on transfusion requirements, clinical features associated with transfusion and effects on in-hospital morbidity...
January 2, 2018: European Journal of Cardio-thoracic Surgery
https://www.readbyqxmd.com/read/29300339/a-retrospective-review-of-resuscitation-planning-at-a-children-s-hospital
#6
Jean Kelly, Jo Ritchie, Leigh Donovan, Carol Graham, Anthony Herbert
Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children's Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented RP. This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (Pediatric Intensive Care Unit or home) influenced the development of resuscitation plans...
January 4, 2018: Children
https://www.readbyqxmd.com/read/29298714/paediatric-palliative-care-improves-patient-outcomes-and-reduces-healthcare-costs-evaluation-of-a-home-based-program
#7
P H Chong, J A De Castro Molina, K Teo, W S Tan
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service's longitudinal impact...
January 3, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29285688/pancreatoblastoma-an-unusual-diagnosis-in-an-adult-patient
#8
Gonçalo Nunes, Hélder Coelho, Marta Patita, Rita Barosa, Pedro Pinto Marques, Lídia Roque Ramos, Maria José Brito, Aurora Tomaz, Jorge Fonseca
The authors describe a 31-year-old man admitted due to progressive weight loss, diarrhea and massive hepatomegaly. Laboratory data showed anemia (haemoglobin 11.7 g/dl), abnormal liver tests (total bilirubin 1.4 g/dl, aspartate aminotransferase 70 U/l, alanine aminotransferase 37 U/l and alkaline phosphatase 520 U/l). Abdominal ultrasound (US) displayed a large heterogeneous liver with a segment IV 25 mm nodule. Magnetic resonance revealed a 4 cm pancreatic tail mass and several liver nodules consistent with metastasis...
December 28, 2017: Clinical Journal of Gastroenterology
https://www.readbyqxmd.com/read/29273020/trends-in-cause-and-place-of-death-for-children-in-portugal-a-european-country-with-no-paediatric-palliative-care-during-1987-2011-a-population-based-study
#9
Ana Forjaz de Lacerda, Barbara Gomes
BACKGROUND: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from countries without paediatric palliative care, which constitute the majority worldwide. METHODS: This is an epidemiological study analysing death certificate data of decedents aged between 0 and 17 years in Portugal, a developed Western European country without recognised provision of paediatric palliative care, from 1987 to 2011...
December 22, 2017: BMC Pediatrics
https://www.readbyqxmd.com/read/29246136/exploring-the-rewards-and-challenges-of-paediatric-palliative-care-work-a-qualitative-study-of-a-multi-disciplinary-children-s-hospice-care-team
#10
Johanna Taylor, Jan Aldridge
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children's hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children's hospice with an aim to identify staff support and development needs...
December 16, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/29228962/decision-making-on-therapeutic-futility-in-mexican-adolescents-with-cancer-a-qualitative-study
#11
Carlo Egysto Cicero-Oneto, Edith Valdez-Martinez, Miguel Bedolla
BACKGROUND: The world literature shows that empirical research regarding the process of decision-making when cancer in adolescents is no longer curable has been conducted in High-income, English speaking countries. The objective of the current study was to explore in-depth and to explain the decision-making process from the perspective of Mexican oncologists, parents, and affected adolescents and to identify the ethical principles that guide such decision-making. METHODS: Purposive, qualitative design based on individual, fact-to-face, semi-structured, in-depth interviews...
December 11, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/29220099/supportive-palliative-care-should-be-integrated-into-routine-care-for-paediatric-patients-with-life-limiting-kidney-disease
#12
REVIEW
Julia Thumfart, Tobias Reindl, Cornelia Rheinlaender, Dominik Müller
Paediatric palliative care is no longer restricted to patients with cancer and has been extended to patients with other chronic conditions, such as cystic fibrosis or neuromuscular disorders. This review focused on the current state of palliative care for children and adolescents with chronic kidney disease (CKD). We assessed the literature on CKD published up to August 2017. All the papers, except one from 1996, were published this century. This review discusses the role that palliative care plays in the process of decision-making and explores the possibilities of implementing palliative care into the routine therapy of affected patients and providing support for their families...
December 8, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/29127099/individualised-advance-care-planning-in-children-with-life-limiting-conditions
#13
Erik A H Loeffen, Wim J E Tissing, Meggi A Schuiling-Otten, Chris C de Kruiff, Leontien C M Kremer, A A Eduard Verhagen
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires...
November 10, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29122828/referrals-to-a-perinatal-specialist-palliative-care-consult-service-in-ireland-2012-2015
#14
Des L McMahon, Marie Twomey, Maeve O'Reilly, Mary Devins
OBJECTIVE: To analyse the referral patterns of perinatal patients referred to a specialist palliative care service (SPCS), their demographics, diagnoses, duration of illness, place of death and symptom profile. DESIGN: A retrospective chart review of all perinatal referrals over a 4-year period to the end of 2015. SETTING: A consultant-led paediatric SPCS at Our Lady's Children's Hospital, Crumlin, Dublin, and the Coombe Women & Infants University Hospital, Dublin...
November 9, 2017: Archives of Disease in Childhood. Fetal and Neonatal Edition
https://www.readbyqxmd.com/read/28963638/widening-access-developing-an-elearning-resource-for-health-and-social-care-professionals-caring-for-children-and-young-people-with-cancer
#15
Wendy McInally, Maria J Pouso Lista, Natalia McLaren, Diane S Willis
Cancer is a key priority worldwide, and caring for children and young people with cancer requires a range of specific knowledge, skills and experience in order to deliver the complex care regimes both within the hospital or community environment. The aim of this paper is to disseminate work undertaken to design and develop pedagogical practice and innovation through an eLearning resource for health care professionals caring for children and young people with cancer across the globe. The work undertaken evaluated an existing cancer course (which has been withdrawn) that was developed and delivered through the Paediatric Oncology Nurses Forum, Royal College Nursing (Nurse Educators) and Warwick University...
September 29, 2017: Journal of Cancer Education: the Official Journal of the American Association for Cancer Education
https://www.readbyqxmd.com/read/28941298/symptom-management-and-psychological-support-for-families-are-the-cornerstones-of-end-of-life-care-for-children-with-spinal-muscular-atrophy-type-1
#16
Chiara Di Pede, Caterina Agosto, Valentina De Tommasi, Alessandra De Gregorio, Franca Benini
AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17 children (13 boys) who attended the University of Padua's paediatric palliative care centre in Italy from March 2000 to March 2015. All the children received supportive care without proactive respiratory intervention to prolong survival...
January 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/28935629/paediatric-advance-care-planning-survey-a-cross-sectional-examination-of-congruence-and-discordance-between-adolescents-with-hiv-aids-and-their-families
#17
Maureen E Lyon, Ronald H Dallas, Patricia A Garvie, Megan L Wilkins, Ana Garcia, Yao Iris Cheng, Jichuan Wang
OBJECTIVES: To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. METHODS: A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised...
September 21, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28900469/necrotic-ulcerated-and-bleeding-striae-distensae-following-bevacizumab-in-a-palliative-setting-for-gliobastomatosis-cerebri
#18
Olivia Laugier, Laetitia Padovani, Arnauld Verschuur, Caroline Gaudy-Marqueste, Nicolas André
Glioblastoma cerebri is a rare paediatric malignancy with dismal prognosis [Chappé C, Riffaud L, and Tréguier C et al (2013) Primary gliomatosis cerebri involving gray matter in pediatrics: a distinct entity? A multicenter study of 14 casesChilds Nerv Syst29 565-571 https://doi.org/10.1007/s00381-012-2016-1 PMID: 23306961] and no established standard of care. Here, we report a case of ulcerated and bleeding striae distensae in a teenage girl following palliative treatment with bevacizumab and steroids.
2017: Ecancermedicalscience
https://www.readbyqxmd.com/read/28836319/paediatric-palliative-care-and-intellectual-disability-a-unique-context
#19
Jacqueline K Duc, Anthony Robert Herbert, Helen S Heussler
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study describes the complex care of children with life-limiting conditions and intellectual disability by means of a literature synthesis and commentary with "best-practice" guide. RESULTS: As few articles concerning children with intellectual disability and palliative care needs were identified by formal systematic review, our expert consensus group has drawn from the paediatric palliative, oncology and adult intellectual disability literature to highlight common clinical challenges encountered in the day-to-day care of children with intellectual disability and life-limiting conditions...
November 2017: Journal of Applied Research in Intellectual Disabilities: JARID
https://www.readbyqxmd.com/read/28814489/right-ventricular-outflow-tract-stent-versus-bt-shunt-palliation-in-tetralogy-of-fallot
#20
COMPARATIVE STUDY
Daniel Quandt, Bharat Ramchandani, Gemma Penford, John Stickley, Vinay Bhole, Chetan Mehta, Timothy Jones, David James Barron, Oliver Stumper
OBJECTIVE: This study sets out to compare morbidity, mortality and reintervention rates after stenting of the right ventricular outflow tract (RVOT) versus modified Blalock-Taussig shunt (mBTS) for palliation in patients with tetralogy of Fallot (ToF)-type lesions. METHODS: Retrospective case review study evaluating 101 patients (64 males) with ToF lesions who underwent palliation with either mBTS (n=41) or RVOT stent (n=60) to augment pulmonary blood flow over a 10-year period...
December 2017: Heart: Official Journal of the British Cardiac Society
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