Browse Items · Pediatric Palliative Care Library

Racial and ethnic differences in hospice enrollment among children with cancer

BACKGROUND: Hospice is an important provider of end of life care. Adult minorities are less likely to enroll on hospice; little is known regarding the prevalence of pediatric hospice use or the characteristics of its users. Our primary objective was…

Symptoms in the palliative phase of children with cancer

BACKGROUND: The aim of the study was to make a comprehensive inventory of the physical, psychological, and social symptoms of children with cancer and their parents during the palliative phase and the extent to which health professionals address…

Caregivers' perceptions following gastrostomy in severely disabled children with feeding problems

Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…

Recurrent pain attacks in a 3-year-old patient with myoclonus epilepsy associated with ragged-red fibers (MERRF): a single-photon emission computed tomographic (SPECT) and electrophysiological study

We reported a 3-year-old girl with myoclonus epilepsy associated with ragged-red fibers (MERRF) who was afflicted with recurrent pain attacks and allodynia on the right side of the body. Although magnetic resonance imaging showed normal intensity in…

Care goals and decisions for children referred to a pediatric palliative care program

OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…

Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes

In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…

Parental perception of cold extremities and other accompanying symptoms in children with cerebral palsy

Cold extremities have been noted in non-walking children with cerebral damage compared with healthy controls. Whether this is a general problem in children with cerebral palsy (CP) and associated with other symptoms is unknown. This study describes…

Life-Sustaining Treatment Status at the Time of Death in a Japanese Pediatric Intensive Care Unit

BACKGROUND: Substantial variability exists among countries regarding the modes of death in pediatric intensive care units (PICUs). However, there is limited information on end-of-life care in Japanese PICUs. Thus, this study aimed to elucidate the…

Does gastrostomy tube feeding in children with cerebral palsy increase the risk of respiratory morbidity?

BACKGROUND: Children with severe neurological impairment may have significant oral motor dysfunction and are at increased risk of nutritional deficiencies, poor growth, and aspiration pneumonia. Gastrostomy tube feeding is increasingly being used for…

Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study

The aim of this study was to estimate the prevalence and severity of feeding and nutritional problems in children with neurological impairment within a defined geographical area. In a cross-sectional study, a validated questionnaire was sent to 377…

Impact of feeding problems on nutritional intake and growth: Oxford Feeding Study II

Poor nutritional status and growth failure are common in children with cerebral palsy (CP). The aim of this study was to assess, within a subgroup of a large and clearly defined population of children with disabilities, the impact of feeding…

Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study

We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y…

Gastrointestinal problems in the neurologically impaired child

Damage to the developing central nervous system may result in significant dysfunction in the gastrointestinal tract and is reflected in impairment in oral-motor function, rumination, gastro-oesophageal reflux, with or without aspiration, delayed…

Tags: 1997, Backlog, Bailliere's Clinical Gastroenterology, Cerebral Palsy/complications, Child, Constipation/etiology, Enteral Nutrition/methods, Gastroesophageal Reflux/etiology/physiopathology/surgery, Gastrointestinal Diseases/etiology/physiopathology, Gastrointestinal Motility, Gastrostomy/adverse effects, Humans, Journal Article, Nervous System Diseases/complications/physiopathology, Nutrition Physiology, Preschool, Q3 Scoping Review Results, Sullivan P

Infantile systemic hyalinosis in siblings: clinical report, biochemical and ultrastructural findings, and review of the literature

A boy presented at age 3.5 months with joint contractures, restlessness, and pain on handling. His skin was thickened and there were livid-red macular lesions over bony prominences. Infantile systemic hyalinosis (ISH) was diagnosed, a presumably…

Life expectancy of children with cerebral palsy

Risk factors for mortality of young children with cerebral palsy were studied using a sample of 12,709 children aged 0.5-3.5 years with cerebral palsy who had received services from the State of California between 1980 and 1995. The most powerful…

Life expectancy of children in vegetative and minimally conscious states

We determined estimates of survival in children, 3-15 years of age, in the vegetative state (VS) (n = 564), immobile minimally conscious state (MCS) (n = 705), and mobile MCS (n = 3,806). Data were extracted from the annual Client Development…

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…

Psychosocial functioning in youth with glycogen storage disease type I

OBJECTIVE: To assess the quality of life and psychosocial functioning among pediatric patients with Glycogen Storage Disease (GSD) types Ia and Ib. METHODS: Thirty-one youth with GSD types Ia and Ib and 42 healthy controls participated. Quality of…

Follow-up in children with Joubert syndrome

Although Joubert syndrome (JS) was first reported in 1969 by Joubert et al (21), the long-term outcome is not yet documented. We report 19 children (4 pairs of siblings) from a single institution diagnosed with JS. Nine children were last seen…

Life threatening illness and hospice care.

A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening…

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…

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

Nutrition-related growth failure of children with quadriplegic cerebral palsy

Growth failure and nutritional status were evaluated in 142 children with quadriplegic cerebral palsy, aged between two and 18 years. Linear growth was assessed by upper-arm and lower-leg lengths: both means were significantly reduced. Mean…

Bisphosphonates: from grandparents to grandchildren

Bisphosphonates are synthetic analogues of pyrophosphate that inhibit bone resorption by their action on osteoclasts. Bisphosphonates have been extensively used in the elderly with primary and secondary osteoporosis, Paget's disease, and…

Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.

OBJECTIVE: This study examined the equivalence reliability of two administration methods for the Functional Independence Measure for Children (WeeFIM). The two methods were direct observation of child performance and parental interview. METHOD:…

Maternal anxiety and depression, poverty and marital relationship factors during early childhood as predictors of anxiety and depressive symptoms in adolescence

BACKGROUND: This paper examines the degree to which symptoms of anxiety and depression at age 14 years are associated with early childhood experience of maternal anxiety and depression, poverty, and mother's marital relationship distress and…

Gemcitabine and docetaxel for the treatment of children and adolescents with recurrent or refractory osteosarcoma: Korea Cancer Center Hospital experience

BACKGROUND: We evaluated the efficacy of gemcitabine and docetaxel chemotherapy (GEM + DOC) in children and adolescents with recurrent or refractory osteosarcoma. METHODS: Data of 28 patients (20 male, 8 female) who received gemcitabine (675 or 900…

Pain assessment in nonverbal children with severe cognitive impairments: the Individualized Numeric Rating Scale (INRS)

Children's Hospital Boston began a major pain assessment and management initiative 3 years ago: Pain assessment and management are considered one of the institution's primary standards of care. The initiative included State of the Science meetings…

Use of health services by chronically ill and disabled children

Hospitalization and use of outpatient health care services during a 1-year period by 369 pediatric patients with cystic fibrosis, cerebral palsy, myelodysplasia, or multiple physical handicaps and 456 randomly selected children without congenital…

Living with cerebral palsy and tube feeding: A population-based follow-up study

OBJECTIVES: To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF). METHODS: Virtually all children…

Malnutrition at diagnosis of malignancy in childhood: common but mostly missed

A prospective, controlled study of nutritional status in 100 newly diagnosed paediatric oncology patients is reported. Results showed that although patients' height-for-age and weight-for-height were normal, mid-upper arm circumference (MUAC) and…

Distraction, exposure therapy, counterconditioning, and topical anesthetic for acute pain management during needle sticks in children with intellectual and developmental disabilities

A behavior therapy approach for obtaining cooperation during needle sticks was provided to 8 pediatric patients with intellectual and developmental disabilities. Therapy was provided during mock needle sticks. Hand lotion was applied to simulate…

Gastrostomy feeding versus oral feeding alone for children with cerebral palsy

BACKGROUND: Children with cerebral palsy (CP) can be significantly disabled in terms of their ability to suck, chew and swallow. This can lead to significant impairment in feeding ability and, eventually, to under-nutrition. It can also result in…

Tags: 2004, Adolescent, Backlog, Cerebral Palsy/complications, Child, Cochrane Database of Systematic Reviews, Eating, Gastrostomy/adverse effects, Humans, Infant, Journal Article, Nutrition Disorders/etiology/prevention & control, Preschool, Sleigh G, Sullivan P, Thomas AG

The clinical spectrum of mitochondrial disease in 75 pediatric patients

The clinical presentation of mitochondrial disorders in childhood is highly variable causing difficulties in diagnosis and management. We assessed records of 75 children (48 male, 27 female) with a biochemically and/or molecularly established…

The emerging issue of euthanasia

2005

Tags: 2005, Adolescent, Archives Of Pediatrics & Adolescent Medicine, Backlog, Child, Decision Making, Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Netherlands, Newborn, Pediatrics/statistics & numerical data, Preschool, Siden HB, Terminal Care

High dose opioids in pediatric palliative care.

Oral methadone for the treatment of severe pain in hospitalized children: a report of five cases

OBJECTIVE: Pain relief is still inadequate in many hospitalized patients, especially children in whom suboptimal use of analgesic drugs is still common. In the past 2 years, oral methadone has been used extensively in our institution for treating…

Methadone is safe for treating hospitalized patients with severe pain

PURPOSE: Methadone is still regarded as a second line opioid for patients suffering from severe pain, and is rarely used in hospitalized patients. The infrequent use of methadone is probably due to its long plasma half-life that could lead to…

Risperidone in the treatment of disruptive behavioral symptoms in children with autistic and other pervasive developmental disorders

OBJECTIVE: To investigate the efficacy and safety of risperidone for the treatment of disruptive behavioral symptoms in children with autism and other pervasive developmental disorders (PDD). METHODS: In this 8-week, randomized, double-blind,…

Bisphosphonate treatment of bone disease

In 1997 a review article on bisphosphonates in this journal identified 24 published articles relating to children at that time. Since then there has been a considerable increase in their use in clinical paediatric practice and research with there…

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