Browse Items · Pediatric Palliative Care Library

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

Sleep disordered breathing in childhood-onset acid maltase deficiency

OBJECTIVES: To clarify the feature of sleep disordered breathing (SDB) associated with childhood-onset acid maltase deficiency (AMD): the progressive nature of SDB and the stage of AMD.;STUDY DESIGN: We retrospectively studied 4 patients with…

Simple changes can improve conduct of end-of-life care in the intensive care unit.

PURPOSE: To describe changes to the conduct of withdrawal of life support (WOLS) in two teaching hospital tertiary care medical surgical intensive care units (ICUs) in a single centre over two distinct time periods., METHODS: We used a retrospective…

Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children?

Religion is an important element of end-of-life care on the paediatric intensive care unit with religious belief providing support for many families and for some staff. However, religious claims used by families to challenge cessation of aggressive…

Tags: 2013, Backlog, Brierley J, Child, Conflict (Psychology), Culture, Humans, Intensive Care Units, Journal Article, Journal of Medical Ethics, Linthicum J, Medical Futility, Pediatric, Petros A, Professional-family Relations, Religion and Psychology, Retrospective Studies, Terminal Care, Withholding Treatment

Short-term safety assessment in the use of intravenous zoledronic acid in children

The clinical side effects of the potent new bisphosphonate zoledronic acid in children are unknown. In this study of 34 children with various bone disorders, the frequency of postinfusion flu-like illness, hypocalcemia, and hypophosphatemia was 85%,…

Shifting place of death among children with complex chronic conditions in the United States, 1989-2003

CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in…

Satisfaction with palliative care: what should we be aware of?

This review addresses some of the methodological, theoretical and technical issues related to using satisfaction as an outcome measure of the quality of palliative care. The components of palliative care are presented, and the different approaches…

Tags: 1998, Backlog, Fakhoury WK, Humans, International Journal Of Nursing Studies, Journal Article, Outcome Assessment (Health Care)/organization & administration, Palliative Care/psychology, Palliative Care/standards, Patient Satisfaction, Prospective Studies, Quality Of Health Care, Research Design, Retrospective Studies

Safety of subcutaneous clodronate and efficacy in hypercalcemia of malignancy: a novel route of administration

Bisphosphonates have become standard treatment in management of malignancy-induced hypercalcemia and malignant bone pain. One obstacle to the routine use of bisphosphonates in palliative patients is that oral bisphosphonates have low bioavailability…

Rotavirus gastroenteritis and seizures in young children

In this retrospective cohort study, a clinical and administrative database of children hospitalized at Primary Children's Medical Center, Salt Lake City, Utah, between January 1, 2002, and December 31, 2006, was used to identify those with…

Risk factors for long intensive care unit stay after cardiopulmonary bypass in children

OBJECTIVES: To determine whether children who experience longer intensive care unit (ICU) stays after open heart surgery may be identified at admission by clinical criteria. To identify factors associated with longer ICU stays that are potential…

Rising national prevalence of life-limiting conditions in children in England.

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the…

Reviewing audit: barriers and facilitating factors for effective clinical audit

OBJECTIVE: To review the literature on the benefits and disadvantages of clinical and medical audit, and to assess the main facilitators and barriers to conducting the audit process. DESIGN: A comprehensive literature review was undertaken through a…

Review of pediatric autopsies performed at a university hospital in Ribeirao Preto, Brazil

CONTEXT: Autopsy continues to provide important data for quality assurance, teaching, scientific purposes, and health planning, especially if performed according to a comprehensive protocol. OBJECTIVE: To describe and analyze data from all perinatal…

Retrospective cross-sectional review of survival rates in critically ill children admitted to a combined paediatric/neonatal intensive care unit in Johannesburg, South Africa, 2013-2015

OBJECTIVE: Report on survival to discharge of children in a combined paediatric/neonatal intensive care unit (PNICU). DESIGN AND SETTING: Retrospective cross-sectional record review. PARTICIPANTS: All children (medical and surgical patients) admitted…

Respiratory symptoms in children dying from malignant disease

Shortness of breath and other respiratory symptoms frequently complicate the symptomatic management of terminally ill adults. The extent of the problem in children is not known, but anecdotal evidence from nurses and physicians experienced in…

Tags: 1995, Backlog, Child, Crabtree S, Death, Dyspnea/physiopathology, Female, Hain RD, Human, Journal Article, Male, Neoplasms/physiopathology, Palliative Medicine, Patel N, Pinkerton R, Respiration Disorders/physiopathology, Retrospective Studies

Respiratory complications of mucopolysaccharide storage disorders

Twenty-one patients with the diagnosis of mucopolysaccharidosis or mucolipidosis and a history of respiratory complaints or thorough respiratory evaluation were studied retrospectively. Anatomic factors affecting respiratory status included: (i)…

Tags: 1988, adenoidectomy, Adolescent, Adult, Airway Obstruction/et [Etiology], Anesthesia General/ae [Adverse Effects], beta adrenergic blockers, breathing difficulties, calcium antagonists, Cardiovascular Diseases/et [Etiology], Child, Child Preschool, digoxin, diuretics, Female, Humans, Infant, Intubation Intratracheal/ae [Adverse Effects], Lung Diseases/et [Etiology], Lung Diseases/pp [Physiopathology], Male, Medicine, MLII, MLIII, MPSI, MPSII, MPSVI, Mucopolysaccharidoses/co [Complications], Mucopolysaccharidoses/mo [Mortality], Mucopolysaccharidoses/pp [Physiopathology], pharmacologic interventions, Pyeritz R E, respiratory problems, Respiratory Tract Diseases/et [Etiology], Respiratory Tract Diseases/pp [Physiopathology], Respiratory Tract Diseases/ra [Radiography], Retrospective Studies, Semenza G L, Sleep Apnea Syndromes/et [Etiology], Spinal Diseases/et [Etiology], Spinal Diseases/ra [Radiography], surgical interventions, theophylline, Tonsillectomy, Tracheostomy

Resource utilization for ovarian cancer patients at the end of life: how much is too much?

OBJECTIVE: End-of-life (EOL) medical care consumes 10-12% of national health care expenditures and 27% of Medicare dollars annually. Studies suggest that hospice services decrease EOL expenditures by 25-40%. The goal of this study was to compare the…

Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants

BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,

Tags: 2022, August 2022 List, Birth Weight, Bourque SL, Cross-sectional Studies, Ethnicity, Hannan KE, Hospital Mortality, Hospital Pediatrics, Humans, Hwang SS, Infant, Palmer C, Retrospective Studies, Tong S

Quality of life and psychological adaptation in siblings of paediatric cancer patients, 2 years after diagnosis

Several studies have been conducted on sibling psychosocial adaptation to cancer in a brother or sister, but little is known on how the long-term adaptation of siblings to the illness develops. The concept quality of life has primarily been applied…

Pulmonary metastasectomy in pediatric/adolescent patients with synovial sarcoma: an institutional review

PURPOSE: Synovial sarcoma (SS) often metastasizes to the lung; however, the indications for and outcomes of pulmonary metastasectomy have not been evaluated in pediatric/adolescent patients. METHODS: The records of pediatric patients (age

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…

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

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients

OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to…

Practice parameter: pharmacological treatment of migraine headache in children and adolescents: report of the American Academy of Neurology Quality Standards Subcommittee and the Practice Committee of the Child Neurology Society

OBJECTIVE: To review evidence on the pharmacologic treatment of the child with migraine headache. METHODS: The authors reviewed, abstracted, and classified relevant literature. Recommendations were based on a four-tiered scheme of evidence…

Period prevalence of epilepsy in children in BC: a population-based study

BACKGROUND: Most estimates of the prevalence of seizure disorders in Canada derive from national surveys which differ in sampling and case-finding methods. This study used health care utilization data to make a population-based estimate of the…

Perceptions of discrimination among Mexican American families of seriously ill children

This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided…

Perceptions of control and long-term recovery from rape

The relationship between perceptions of control and symptoms of both long-term depression and post-traumatic stress was examined. Enduring beliefs of personal competence and control were found to be associated with lower rates of depression and…

Pediatric sedation with analgesia

Sedation with analgesia is frequently required to perform painful or invasive procedures in children. The best medication combination for pediatric sedation with analgesia is yet to be identified. Sixty-four of 243 total sedation with analgesia…

Pediatric Primary Care Involvement In End-of-life Care For Children

OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care…

Pediatric patients receiving palliative care in Canada: results of a multicenter review

OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN:…

Patients with malignant hematological disorders treated on a palliative care unit: prognostic impact of clinical factors

A reliable estimation of prognosis in patients receiving palliative care is desirable in order to facilitate clinical decision finding. For patients with advanced hematological malignancies, only few data are available to estimate prognosis of the…

Parents' experiences of pediatric palliative care and the impact on long-term parental grief.

CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…

Parent resuscitation preferences for young people with severe developmental disabilities.

OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective,…

Tags: 2006, Adolescent, Adult, Advance Care Planning/og [Organization & Administration], Advance Care Planning/organization & Administration, Analysis of Variance, Attitude To Health, Backlog, Child, Choice Behavior, Consent Forms, Developmental Disabilities/co [Complications], Developmental Disabilities/complications/therapy, Developmental Disabilities/th [Therapy], DNAR, Documentation, Female, Friedman SL, Health Education/og [Organization & Administration], Health Education/organization & administration, Humans, Journal Article, Journal Of The American Medical Directors Association, Male, Massachusetts, Organizational Policy, Parents, Parents/ed [education], Parents/education/psychology, Parents/px [psychology], Preschool, Program Evaluation, Resuscitation Orders/psychology, Resuscitation Orders/px [Psychology], Retrospective Studies, Skilled Nursing Facilities/og [Organization & Administration], Skilled Nursing Facilities/organization & administration, Treatment Refusal/psychology, Treatment Refusal/px [Psychology]

Palliative sedation for children at end of life: a retrospective cohort study

BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children…

Tags: 2022, April 2022 List, BMC Palliative Care, Chen Y, Child, Children, Death, End Of Life, Humans, Hypnotics and Sedatives/therapeutic use, Jiang J, Pain, Palliative Care, Palliative sedation, Peng W, Retrospective Studies, Symptom Control, Terminal Care, Zhang C

Palliative medicine consultation impacts DNR designation and length of stay for terminal medical MICU patients.

OBJECTIVE: The purpose of this study was to assess the impact of a palliative medicine consultation on medical intensive care unit (MICU) and hospital length of stay, Do Not Resuscitate (DNR) designation, and location of death for MICU patients who…

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS:…

Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study

Outcomes in children after intestinal transplant

OBJECTIVE: The survival rates after pediatric intestinal transplant according to underlying disease are unknown. The objective of our study was to describe the population of pediatric patients receiving an intestinal transplant and to evaluate…

Outcomes and causes of death in children on home mechanical ventilation via tracheostomy: an institutional and literature review

OBJECTIVE: To describe outcomes and causes of death in children on chronic positive-pressure ventilation via tracheostomy. STUDY DESIGN: We conducted a retrospective observational cohort analysis of 228 children enrolled in an university-affiliated…

Browse Items (209 total)