Browse Items · Pediatric Palliative Care Library

Modern approach to children with osteogenesis imperfecta

Osteogenesis Imperfecta (OI) is characterized by bone fragility. At least seven discrete types have been described ranging from mild disease to a lethal form. In a large number of cases, mutations in one of the two genes encoding type I collagen have…

Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This…

Parents of children diagnosed with cancer: work situation and sick leave, a five-year post end-of-treatment or a child's death follow-up study

BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment…

Does an acute pain service improve postoperative outcome?

Smoked cannabis for chronic neuropathic pain: a randomized controlled trial

BACKGROUND: Chronic neuropathic pain affects 1%-2% of the adult population and is often refractory to standard pharmacologic treatment. Patients with chronic pain have reported using smoked cannabis to relieve pain, improve sleep and improve mood.…

When paediatricians and families can't agree

Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…

Tags: 2018, April List 2024, Archives of Disease in Childhood, Child, Child Health Care, Conflict, Ethics, Experimental Therapy, Human, Infant, Medical Ethics, Preschool Child, Terminal Care, Treatment Outcome, Treatment Withdrawal, United Kingdom, Wallis C

A two-step multidisciplinary approach to treat recurrent esophageal strictures in children with epidermolysis bullosa dystrophica

In children with severe generalized recessive dystrophic epidermolysis bullosa (RDEB), esophageal scarring leads to esophageal strictures with dysphagia, followed by malnutrition and delayed development. We describe a two-step multidisciplinary…

Outcome reporting in industry-sponsored trials of gabapentin for off-label use

BACKGROUND: There is good evidence of selective outcome reporting in published reports of randomized trials. METHODS: We examined reporting practices for trials of gabapentin funded by Pfizer and Warner-Lambert's subsidiary, Parke-Davis (hereafter…

Effectiveness of Music Intervention in Ameliorating Cancer Patients' Anxiety, Depression, Pain, and Fatigue: A Meta-analysis

BACKGROUND:: This is the first study to use meta-analysis as a scientific technique to provide an integrated analysis of the effectiveness of music intervention in cancer patients. OBJECTIVES:: The purpose of this study was, using the meta-analysis…

Tags: 2014, Backlog, Cancer Nursing, Chang CC, Chen YR, Chi MJ, Chou KR, Chung MH, Journal Article, Liao Yuan M, Music Therapy, Oncology, Treatment Outcome, Tsai Hsiu F

Dystonia in neurodegeneration with brain iron accumulation: outcome of bilateral pallidal stimulation

Neurodegeneration with brain iron accumulation encompasses a heterogeneous group of rare neurodegenerative disorders that are characterized by iron accumulation in the brain. Severe generalized dystonia is frequently a prominent symptom and can be…

Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with…

Tags: 2018, Blogging, Child Parent Relation, Copeland A J, Edwards syndrome, Human, March 2019 List, Psychology, The Journal of medical humanities, Thorvilson M J, Treatment Outcome

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…

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.…

The clinical course of childhood and adolescent adrenoleukodystrophy before and after Lorenzo's oil

The clinical course of Japanese patients with childhood and adolescent adrenoleukodystrophy (ALD) who were treated with Lorenzo's oil after the progression of early symptoms was investigated by Kaplan-Meier analyses. Many of the early symptoms,…

Tags: 2001, Adolescent, Adrenoleukodystrophy/drug therapy/pathology/physiopathology, Backlog, Brain & Development, Child, Disease Progression, Erucic Acids/therapeutic use, Humans, Imamura A, Japan, Journal Article, Kondo N, Male, Q3 Scoping Review Results, Shimozawa N, Suzuki Y, Treatment Outcome

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…

Comparison of treatment modalities in syndromic children with Obstructive Sleep Apnea-A randomized cohort study

Introduction: Obstructive Sleep Apnea (OSA) is a common medical problem in adults that is becoming increasingly recognized in children. It occurs in the pediatric age group, from newborns to teens. More recently, many specialists have estimated OSA…

Tags: 2014, adenotonsillectomy, apnea hypopnea index, Article, Arumugam S V, breathing difficulties, Child, Clinical Effectiveness, Continuous Positive Airway Pressure, Controlled Study, CPAP device, Down Syndrome, Epworth sleepiness scale, ess-c, Female, Follow Up, Human, International Journal of Pediatric Otorhinolaryngology, Kameswaran M, Major Clinical Study, Male, MPSI, MPSII, MPSIII, MPSIIIA, MPSIIIB, MPSVI, MPSVII, Mucopolysaccharidoses, Mucopolysaccharidosis, Murali S, osa-18, outcome assessment, Paramasivan V K, Pediatric obstructive sleep apnea, physical interventions, positive end expiratory pressure, Priority Journal, Quality Of Life, radiofrequency ablation device, Randomized Controlled Trial, sleep disordered breathing/su [Surgery], sleep disordered breathing/th [Therapy], Sudarsan S S, surgical interventions, Treatment Outcome

Experience in the use of the palliative care outcome scale.

GOALS OF WORK: The objective of the study is to assess the Palliative Care Outcome Scale (POS) as a potential audit tool within a specialist cancer centre. It also aims to answer the following questions: does the tool identify problem areas and…

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

Antiepileptic drug therapy for adults: when to initiate and how to choose

Although antiepileptic drugs (AEDs) are commonly used to control and prevent seizures, their long-term use carries a considerable risk of morbidity. The decision to start AEDs is made once the risks of further seizures outweigh the risks of…

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…

A randomized comparison of patients' understanding of number needed to treat and other common risk reduction formats

BACKGROUND: Commentators have suggested that patients may understand quantitative information about treatment benefits better when they are presented as numbers needed to treat (NNT) rather than as absolute or relative risk reductions. OBJECTIVE: To…

Tags: 2003, 80 And Over, Aged, Backlog, Comprehension, Cross-sectional Studies, Data Interpretation, Female, Humans, Journal Article, Journal Of General Internal Medicine, Lewis CL, Male, Middle Aged, Pignone MP, Risk, Sheridan SL, statistical, Treatment Outcome

Adherence to medical recommendations and transition to adult services in pediatric transplant recipients

PURPOSE OF REVIEW: Nonadherence to treatment recommendations, especially when associated with transition to adult care providers, account, by some estimates, for most organ rejections and death in long-term pediatric survivors of solid organ…

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…

Efficacy and tolerance of gastrostomy feeding in pediatric forms of neuromuscular diseases

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) is a simple and reliable method, but there are few data about its use in pediatric forms of neuromuscular diseases (NMD). The aim of this study was to evaluate the nutritional effects and…

Benzodiazepine dependence and withdrawal: a review of the syndrome and its clinical management

The treatment of anxiety has evolved through various phases. Currently, there is a growing recognition that anxiety disorders are frequently chronic and/or recurrent. There is also less optimism than a decade ago that benzodiazepines will be replaced…

Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity

CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether…

Tags: 2012, Anderson PJ, Apnea/drug therapy, Asztalos EV, Backlog, Barrington KJ, Blindness/epidemiology/etiology/prevention & control, Caffeine/adverse effects/therapeutic use, Central Nervous System Stimulants/adverse effects/therapeutic use, Cerebral Palsy/epidemiology, Child, Child Development, Cognition Disorders/epidemiology/etiology/prevention & control, Davis PG, Deafness/epidemiology/etiology/prevention & control, Developmental Disabilities/epidemiology/etiology/prevention & control, Dewey D, Doyle LW, Female, Follow-up Studies, Grunau RE, Humans, Incidence, Infant, JAMA, Journal Article, Male, Moddemann D, N2N, Newborn, Odds Ratio, Ohlsson A, Premature, Preschool, Roberts RS, Schmidt B, Solimano A, Survival Analysis, Tin W, Treatment Outcome, Trial Investigators Caffeine for Apnea of Prematurity (CAP), Very Low Birth Weight

Use of patient-controlled analgesia for pain control in dying children

BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare.…

Systematic review of bisphosphonates for hypercalcaemia of malignancy

BACKGROUND: Bisphosphonates are the treatment of choice for hypercalcaemia of malignancy (HCM) but there is no consensus regarding which drug or dose should be given. We designed a systematic review to investigate the efficacy of bisphosphonates in…

Tags: 2004, Backlog, Broadley KE, Diphosphonates/therapeutic use, Edmonds PM, Humans, Hypercalcemia/drug therapy, Journal Article, Neoplasms/complications, Non-U.S. Gov't, Palliative Medicine, Patel S, Randomized Controlled Trials, Research Support, Ross JR, Saunders Y, Steering Group, Treatment Outcome

Safety and efficacy of rosuvastatin therapy for the prevention of hyperlipidemia in adult cardiac transplant recipients

BACKGROUND: Hyperlipidemia after orthotopic heart transplantation (OHT) is associated with immunosuppression. Many OHT patients have increased lipid levels above published guidelines despite treatment with high doses of statins. Treatment with…

Palliative sedation: The author's response

2005

Tags: 2005, Backlog, Ethics, Humans, Hypnotics and Sedatives/administration & dosage, Journal Article, Journal Of Palliative Care, Medical, Palliative Care, Physician's Practice Patterns, Rousseau P, Treatment Outcome, United States

Nutritional support in pediatric cancer patients

2000

Tags: 2000, Anorexia/etiology/therapy, Backlog, Bianchi N, Cachexia/etiology/therapy, Child, Child Nutrition Disorders/epidemiology/etiology/therapy, Garcia AA, Growth/drug effects, Humans, Journal Article, Nenadov-Beck M, Neoplasms/complications/therapy, Nestle Nutrition Workshop Series. Clinical And Performance Programme, Nutrition Assessment, Nutritional Support, Roulet M, Treatment Outcome

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…

The use of methadone for cancer pain

Methadone is not a new analgesic drug [69]. Several studies have demonstrated that methadone is a valid alternative to morphine, hydromorphone, and fentanyl for the treatment of cancer-related pain, and extensive reviews on the subject have been…

A prospective investigation into the epidemiology of in-hospital pediatric cardiopulmonary resuscitation using the international Utstein reporting style

OBJECTIVE: Data regarding pediatric in-hospital cardiopulmonary resuscitation (CPR) have been limited because of retrospective study designs, small sample sizes, and inconsistent definitions of cardiac arrest and CPR. The purpose of this study was to…

Acupuncture against chemotherapy-induced nausea and vomiting in pediatric oncology. Interim results of a multicenter crossover study

GOALS: In this multicenter crossover study, our aim was to evaluate the efficacy and acceptance of acupuncture as a supportive antiemetic approach during highly emetogenic chemotherapy in pediatric oncology. PATIENTS AND METHODS: Eleven children…

Percutaneous CT-guided cordotomy for the treatment of pediatric cancer pain

Percutaneous cordotomy using CT guidance has been shown to be a safe and effective means of reducing pain in adults with cancer in 2 large case series. Its effectiveness in pediatric patients, however, has not been reported. Here, the authors present…

Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems

Background and purpose: This study describes clinical outcomes of palliative radiation therapy (RT)for children treated in distinct health-care environments-the US where there is advanced integration of palliative resources and Brazil, a country in…

Tags: 2019, Alcorn S R, Anorexia, Article, bradycardia, Brain Metastasis, Cancer Palliative Therapy, cancer radiotherapy, Cancer Survival, Chen M J, Chen Q, Child, Childhood Cancer/rt [radiotherapy], Clinical Outcome, Clinical Practice, Cohort Analysis, Figueiredo M L S, Follow Up, Human, Ladra M, leukemia/rt [Radiotherapy], lymphoma/rt [Radiotherapy], Major Clinical Study, mucosa inflammation, neuroblastoma/rt [Radiotherapy], Oncology 2019 List, Opiate/dt [drug Therapy], opiate/pv [Special Situation for Pharmacovigilance], osteosarcoma/rt [Radiotherapy], Pain/dt [drug Therapy], Palliative radiation therapy, Palliative Therapy, pediatric patient, Pediatric radiation therapy, Preschool Child, Priority Journal, radiation dermatitis, Radiation Dose Fractionation, radiation induced neoplasm, Radiotherapy and Oncology, Rao A D, rectum hemorrhage, Sehgal S, Terezakis S A, Treatment Outcome, treatment response, tumor growth, Villar R, Yegya-Raman N

Change in parent-identified goals in young children with cerebral palsy receiving a context-focused intervention: associations with child, goal and intervention factors

The purpose of this study was to examine the relationship between goal achievement measured by the Canadian Occupational Performance Measure (COPM) and child, goal, and intervention factors. Participants were 41 preschool children with cerebral palsy…

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