Browse Items · Pediatric Palliative Care Library

Predicting outcome after childhood brain injury

Tags: 2012, Backlog, Brain Injuries/complications/mortality/rehabilitation, Canadian Medical Association Journal, Child, Forsyth R, Humans, Journal Article, Kirkham F, Outcomes, Prognosis, Risk Factors, Treatment Outcome

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of…

Tags: 2023, abdominal pain, Adolescent, Analgesia, Analgesics Opioid, Anthropology Cultural, Caes L, Child, Child Parent Relation, Chronic Pain, Cochrane Database of Systematic Reviews, Complex Regional Pain Syndrome, cultural anthropology, Disease Severity, endometriosis, ethnography, Family, Family Life, February List 2024, Fibromyalgia, Forbat L, France E, Headache, Health Care Personnel, Health Service, Human, Humans, inflammatory bowel disease, Jordan A, juvenile rheumatoid arthritis, migraine, musculoskeletal pain, narcotic analgesic agent, Noyes J, outcome assessment, Pain Assessment, Pain Severity, patient-reported outcome, pediatric patient, Peer Group, Personal Experience, Prognosis, Quality Of Life, racism, Review, Sibling, Silveira Bianchim M, Social Care, Social Isolation, Social Support, Social Work, Systematic Review, Thomson K, Turley R, Uny I, Wellbeing

Mucopolysaccharidosis type I, II and VI and response to enzyme replacement therapy: Results from a single-center case series study

Mucopolysaccharidoses (MPS) types I, II and VI are associated with deficiencies in alpha-L-iduronidase, iduronate-2-sulfatase and N-acetylgalactosamine-4-sulfatase, respectively, and generally involve progressive and multi-systemic clinical…

Tags: 2017, Agarwal A, Albano LMJ, El Dib R, Franco Jfds, Glycosaminoglycans, Intractable Rare Dis Res, Kim CA, Lysosomal Storage Disorders, Milhan NVM, November 2017 List, Prognosis, Soares D, Treatment

Advanced care planning in children with life-limiting conditions – the Wishes Document

Family attitudes toward genomic sequencing in children with cardiac disease

Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to…

Long-term follow-up of neonatal mitochondrial cytopathies: a study of 57 patients

OBJECTIVES: We sought to determine the long-term clinical and biochemical outcome of newborns with mitochondrial cytopathies (MCs) and to identify possible prognostic factors that may modify the course of these diseases. MATERIAL AND METHODS:…

Menkes' kinky hair syndrome

Infantile systemic hyalinosis: newly recognized disorder of collagen?

Four infants with stiff skin and painful joint contractures in the first few months of life are described. Other features included small papules, particularly on the face and trunk, perianal nodules, hyperpigmentation over the metacarpophalangeal…

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

Identifying futility in a paediatric critical care setting: a prospective observational study

AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…

Lung disease in Niemann-Pick disease

BACKGROUND: Lung involvement in children with Niemann-Pick disease has rarely been studied systematically. OBJECTIVE: To assess the involvement of the lung and the value of bronchoalveolar lavage in children with Niemann-Pick diseases. DESIGN:…

Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit

Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician…

Tags: 2013, Adolescent, Adult, Aged, Backlog, Communication, Critical Care, Family, Female, Gutierrez KM, Humans, Intensive Care Units, Journal Article, Male, Middle Aged, Nursing Inquiry, Professional-family Relations, Prognosis, Terminal Care

Neonatal serious illness: operational definition

OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness…

Clinical manifestation and natural course of late-onset Pompe's disease in 54 Dutch patients

Late-onset Pompe's disease (acid maltase deficiency, glycogen storage disease type II) is a slowly progressive myopathy caused by deficiency of acid alpha-glucosidase. Current developments in enzyme replacement therapy require detailed knowledge of…

When a child becomes terminal: Discrepant adolescent and parent perspectives on discussing a terminal prognosis with adolescents with cardiomyopathy, heart failure, and heart transplant

Introduction: Adolescents with cardiomyopathy, heart failure, and heart transplant (CMHF/HTx) are at risk of life-changing complications and premature death. The importance of advance care planning (ACP) in pediatric patients with HIV and cancer has…

Prognostication in hospice care: can the palliative performance scale help?

BACKGROUND: Accurate prognostication of the trajectory of an illness provides multiple benefits in end-of-life care. Prognostic information facilitates more realistic decision making regarding ongoing treatment, fosters risk-benefit considerations of…

Association between religious and socio-economic background of parents of children with solid tumors and DNR orders

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

Sick leave among parents of children with cancer - a national cohort study

BACKGROUND: Due to psychological distress and an increased care burden, parents of children diagnosed with cancer may face a higher risk of sickness absence from work. The objective of this study was to examine the association of childhood cancer…

Joubert syndrome: long-term follow-up

The impact of a palliative medicine consultation service in medical oncology.

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month…

Clinical phenotype, prognosis and mitochondrial DNA mutation load in mitochondrial encephalomyopathies

We studied 42 individuals, including 8 patients with either complete or partial syndrome of mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes (MELAS), 8 patients with either complete or partial syndrome of myoclonic…

Effect of severity of disability on survival in north east England cerebral palsy cohort

AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of…

Children's experiences of cystic fibrosis: a systematic review of qualitative studies

BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…

Delivery Room Practices For Extremely Preterm Infants: The Harms Of The Gestational Age Label.

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Epidural analgesia for postoperative pain control in children

Ninety-eight continuous postoperative epidurals were administered to 87 children. The patients were divided into two groups: group I included 63 cases in which a 0.0625-0.25% solution of bupivacaine was continuously administered; group II included 35…

Predictive factors for do-not-resuscitate designation among terminally ill cancer patients receiving care from a palliative care consultation service.

CONTEXT: Since the development of palliative care in the 1980s, "do not resuscitate" (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients., OBJECTIVES: This study aimed to evaluate the effect of a…

Tags: 2014, Aged, Backlog, Chen JS, Chou WC, DNAR, Family/px [psychology], Female, Hsieh C-H, Hsu H-C, Huang K-G, Humans, Hung Y-S, Jaing T-H, Journal Article, Journal of Pain and Symptom Management, Kao Chen-Yi, Liau Chi-Ting, Lin Yung-Chang, Liu Chien-Ying, Liu Keng-Hao, Liver Neoplasms/di [Diagnosis], Liver Neoplasms/pp [Physiopathology], Liver Neoplasms/px [Psychology], Liver Neoplasms/th [Therapy], Male, Middle Aged, Multivariate Analysis, Neoplasms/di [Diagnosis], Neoplasms/pp [Physiopathology], Neoplasms/px [psychology], Neoplasms/th [therapy], Palliative Care, Prognosis, Referral And Consultation, Resuscitation Orders, Resuscitation Orders/px [Psychology], Retrospective Studies, Sex Factors, Shen W-C, Su Po-Jung, Taiwan, Tang Shu-Chuan, Terminally Ill, Terminally Ill/px [Psychology], Time Factors, Wang Hung-Ming, Wu Jin-Hou

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

Niemann-Pick disease type C: diagnosis and outcome in children, with particular reference to liver disease

The records of 52 children with Niemann-Pick disease type C were reviewed to establish whether the disease process and outcome varied with the initial clinical pattern; 34 children (65%) had cholestatic liver disease and hepatosplenomegaly in…

Changing mortality in congenital heart disease

OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since…

Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems

Development of an innovative program to improve provision of palliative and hospice care to children and families in the community: The story of QoLA Kids

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

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