OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health…
BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…
As increasing numbers of young people with chronic illness reach adulthood, their ongoing medical care must evolve to be delivered in an adult rather than paediatric setting, a process known as transition. Towards this goal, increasing numbers of…
Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few…
OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to…
BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001,…
PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…
The goals of pediatric rheumatologists are to ensure the best possible medical, functional, and social outcomes for their patients. Transition from pediatric to adult rheumatology care is a critical component of comprehensive care for adolescents and…
Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and…
BACKGROUND: The World Health Organization encourages the development of youth friendly services, yet little is known on how youth currently present in general practice. OBJECTIVE: To describe the perspectives, expectations, and service receipt of…
OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of…
BACKGROUND: This study investigated the role of partner relationships in the young person's experience of diabetes. It was predicted that those people reporting a better quality relationship would report greater social support and better diabetes…
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…
Niemann-Pick disease type C (NPC) is an autosomal recessive, neurovisceral lipid storage disorder. Mutations in two genes (NPC1 and NPC2) produce indistinguishable clinical phenotypes by biochemical mechanisms that have not yet been entirely…
The management of pain in children with life-limiting illnesses is complex and unfortunately not often done effectively. Pain is a multidimensional symptom that can overshadow all other experiences of both the child and family. This article focuses…
AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family…
BACKGROUND: While there has been a rapid increase of inpatient palliative care (PC) programs, the financial and clinical benefits have not been well established. OBJECTIVE: Determine the effect of an inpatient PC consultation service on costs and…
BACKGROUND: There are few cost-minimisation studies in telemedicine. We have compared the actual costs of providing a telepaediatric service to the potential costs if patients had travelled to see the specialist in person. METHODS: In November 2000,…
The adolescents with asthma are a distinct group of patients with different problems and needs compared to children and adults. Specific issues of asthma in adolescence are the variability of the clinical spectrum, the presence of particular risk…
ABSTRACT: BACKGROUND: Bone pain in malignancy can be challenging to treat. Bisphosphonates have been found to be useful in adults with bone pain, but there are no reports of their use in children for this indication. In pediatric palliative medicine…
OBJECTIVES: This paper offers an overview of the findings of research into the experience of having cancer in adolescence and young adulthood, the aims of which were to understand how age and life stage affect the illness experience and impact upon…
Background Few studies have investigated functional and behavioural variables of Cornelia de Lange Syndrome (CdLS) in a large sample of individuals. The aim of this study is to provide greater insight into the clinical, behavioural and cognitive…
Psychological and behavioral adaptation to HIV is integral to long-term survival. Although most research on coping with HIV has focused on factors associated with poor adaptation, recent research has expanded to include positive concomitants of…
It is accepted that inflammatory mediators released from leukocytes contribute to the generation of pain. However, it is less well known that immune cells also produce mediators that can effectively counteract pain. These include anti-inflammatory…
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…
OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western…
CONTEXT: Multiple pathogenic mechanisms may be involved in generating the migraine symptom complex, and multimechanism-targeted therapy may confer advantages over monotherapy. OBJECTIVE: To evaluate the efficacy and safety of a fixed-dose tablet…
