IMPORTANCE: While data exist regarding the frequency and timing of the do-not-resuscitate (DNR) order in children, little is known about clinician attitudes and behaviors regarding this order. OBJECTIVE: To identify clinician attitudes regarding the…
IMPORTANCE Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied. OBJECTIVE To examine the efficacy of…
Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their…
The increasing longevity of patients with congenital and developmental disorders of the nervous system reflects the palliative and social success of pediatrics in the past 2 decades. This success has resulted in an increasing number of adult patients…
Percutaneous transluminal pulmonary valvuloplasty may be indicated in not only isolated pulmonary valve stenosis, but also complex congenital heart diseases. Because palliative surgery for increasing pulmonary blood flow entails a risk of scar…
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…
BACKGROUND: Although sleep and physical activity often are impaired among adult cancer patients, there is limited data among pediatric oncology populations. We conducted a prospective study to investigate the relationship between physical activity…
BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer…
BACKGROUND: Pediatric patients experience significant symptoms during cancer treatment. Symptom management is frequently inadequate. We studied perceptions of pediatric oncology care providers regarding early integration of palliative care (PC) for…
BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also…
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…
Pediatric patients between the ages of 12 months and 17 years with a confirmed malignancy who were scheduled to receive aprepitant as part of triple therapy antiemetic prophylaxis for a cycle of moderately- or highly emetogenic chemotherapy were…
Seizures are a frequent complication associated with several neurogenetic disorders. Antiepileptic medications remain the mainstay of treatment in these patients. We summarized the available data associated with various antiepileptic therapies used…
Pediatric pharmacotherapy is often challenging due to the paucity of available clinical data on the safety and efficacy of drugs that are commonly used in children. This quandary is even more prevalent in children with rare diseases. Although…
UNLABELLED: Pain in children with cognitive impairment and cerebral palsy is a particularly relevant issue due to its high prevalence and impact on quality of life. We review available evidence about prevalence of pain, causes and specific treatment,…
Continuous sedation until death (CSD), the act of reducing or removing the consciousness of an incurably ill patient until death, often provokes medical-ethical discussions in the opinion sections of medical and nursing journals. A content analysis…
Pain is a complex construct that contributes to profound physical and psychological dysfunction, particularly in individuals coping with chronic pain. The current paper builds upon previous research, describes a balanced conceptual model that…
Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital…
PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their…
In the GRADE approach, the strength of a recommendation reflects the extent to which we can be confident that the composite desirable effects of a management strategy outweigh the composite undesirable effects. This article addresses GRADE's approach…
CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic…
CONTEXT: Children at the end of life often lack access to hospice care at home or in a dedicated facility. The factors that may influence whether or not hospices provide pediatric care are relatively unknown. OBJECTIVES: The purpose of this study was…
CONTEXT: Previously reported studies of children with cancer mostly provide cross-sectional knowledge of the prevalence of symptoms but do not show when during the disease trajectory and after the end of successful treatment certain symptoms are most…
CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial…
CONTEXT: The progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available. OBJECTIVES: To systematically review the evidence for…
OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…
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
OBJECTIVES: To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction.…
Over the course of a career most physicians will manage only a handful of children through End Stage Lung Disease. Nonetheless, the approach of the physician to this challenge will have a profound impact on the children and families they encounter.…
OBJECTIVE: To evaluate the impact of the interaction of physical function and emotional well-being on disease-related parameters and coping with rheumatoid arthritis. METHODS: A cross-sectional survey among 177 RA patients included demographic and…
OBJECTIVE: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and…
BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…
OBJECTIVE: Although race and ethnic background are known to be important factors in the completion of advance directives, there is a dearth of literature specifically investigating the effect of race and ethnicity on advance directive completion rate…
This review focuses on parental decision making regarding the care and treatment of children with cancer. Articles were abstracted from the following sources: Ovid Databases (Cochrane Database of Systematic Reviews, Database of Abstracts of Review of…
