Browse Items · Pediatric Palliative Care Library

Youth and young adults with cerebral palsy: their use of physician and hospital services

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…

Young people's satisfaction of transitional care in adolescent rheumatology in the UK

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…

Young people with chronic illness: the approach to transition

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…

Tags: 2007, Adolescent, Adolescent Transitions, Adult, Age Factors, Australia, Backlog, Chronic Disease, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Douglass JA, Humans, Internal Medicine Journal, Journal Article, Kennedy A, Pediatrics, Sawyer SM, Self Care, Sloman F

Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood

PURPOSE: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care…

Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs

OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational…

Use of health care among adults with chronic and complex physical disabilities of childhood

PURPOSE. The purpose of this study was to explore the patterns of health services utilization among adults with chronic and complex physical disabilities of childhood, specifically cerebral palsy, spina bifida, and acquired brain injuries.METHODS. A…

Understanding and Validity in Qualitative Research

Qualitative researchers rely â€” implicitly or explicitly â€” on a variety of understandings and corresponding types of validity in the process of describing, interpreting, and explaining phenomena of interest. In this article, Joseph Maxwell makes…

Tags: 1992, Adolescent Transitions, Backlog, Harvard Educational Review, Journal Article, Maxwell J

Trends in transition from pediatric to adult health care services for young adults with chronic conditions

PURPOSE: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling…

Transitional medicine: will emergency medicine physicians be ready for the growing population of adults with congenital heart disease?

BACKGROUND: Currently, approximately 85% of children with significant congenital heart problems survive to adolescence and adulthood. This survival rate represents a dramatic improvement in the medical and surgical care of congenital heart disease…

Transition to adulthood: the important role of the pediatrician

This article, written by a parent of 2 youths with special health care needs and a pediatrician, builds on the Medical Home framework to give concrete examples of what physicians and families can and should do to prepare families for transition(s).…

Tags: 2004, Adolescent, Adolescent Development, Adolescent Transitions, Backlog, Child, Child Development, Chronic Disease, Developmental Disabilities, Disabled Children, Humans, Infant, Journal Article, Olsen DG, Pediatrics, Physician's Role, Preschool, Swigonski NL

Transition to adulthood as a parent-youth project: Governance transfer, career promotion, and relational processes.

Transition to adult care: Experiences and expectations of adolescents with a chronic illness

Purpose: We hypothesized that adults with CHD are likely to be better adapted to their disease and as likely to have met their adolescent developmental milestones, as adults with acquired heart disease (AHD) of the same organ. Methods: A convenience…

Tags: 2005, Adolescent Transitions, Backlog, Britto M, Journal Article, Journal of Adolescent Health, Slap G, Tuchman L

Transition programs in cystic fibrosis centers

2004

Tags: 2004, Adolescent, Adolescent Transitions, Adult, Backlog, Continuity Of Patient Care, Conway SP, Cystic Fibrosis/therapy, Great Britain, Humans, Journal Article, Patient Transfer, Pediatric Pulmonology

Transition program from pediatric to adult care for cystic fibrosis patients

A survey of adolescents and young adults with cystic fibrosis (CF) attending an adult CF center was conducted to evaluate a transition program as a means of transferring care from pediatric to adult setting. A total of 40 patients completed a…

Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach

INTRODUCTION: The outcomes of different types of transitions of young people with chronic diseases have been poorly investigated. OBJECTIVE: To evaluate and compare a structured transition from the paediatric diabetes services (PDS) into the adult…

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition…

Transition of care: health care professionals' view

There is much anxiety regarding the transfer of adolescents with chronic illness to adult services. Transfer of patients can be haphazard if the transition has not been planned. Problems and obstacles to transition have been identified and discussed…

Transition of care from paediatric to adult services: one part of improved health services for adolescents

Ensuring a safe and effective transition of young people with chronic illness and disability from paediatric care to adult health services is a key quality issue for the NHS. To achieve this, three elements must be pursued with vigour. Firstly, a…

Tags: 2008, Adolescent, Adolescent Health Services/standards, Adolescent Transitions, Archives of Disease in Childhood, Backlog, Continuity of Patient Care/standards, Delivery of Health Care/standards, Great Britain, Humans, Journal Article, Quality Of Health Care, State Medicine/standards, Viner RM

Transition of care from paediatric to adult services in cardiology

2007

Tags: 2007, Adolescent, Adolescent Transitions, Adult, Archives of Disease in Childhood, Backlog, Cardiology/organization & administration, Child, Congenital/psychology/therapy, Continuity of Patient Care/standards, Delivery of Health Care/ethics/standards, Female, Heart Defects, Hudsmith LE, Humans, Journal Article, Male, Pediatrics, Thorne SA

Transition of care from child to adult mental health services: the great divide

PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the…

Transition in chronic illness: Who is going where?

AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for…

Tags: 2008, Adolescent, Adolescent Medicine, Adolescent Transitions, Backlog, Brodie L, Child, Chronic Disease/epidemiology/therapy, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Hospitals, Humans, Interviews As Topic, Journal Article, Journal of Paediatrics and Child Health, New South Wales/epidemiology, Pediatric, Steinbeck KS, Towns SJ

Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease

Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…

Transition from pediatric to adult services: are we getting it right?

PURPOSE OF REVIEW: The transition of healthcare from pediatric to adult settings has become more significant over the past 20 years as the survival of young people with chronic illness and disability has increased and healthcare delivery has become…

Tags: 2008, Adolescent, Adolescent Medicine/organization & administration, Adolescent Transitions, Age Factors, Australia, Backlog, Chronic Disease, Continuity Of Patient Care/organization & Administration, Current Opinion In Pediatrics, Delivery of Health Care/organization & administration, Humans, Journal Article, Kennedy A, Models, Organizational, Patient Care Planning/organization & administration, Pediatrics, Sawyer S

Transition from pediatric to adult care: experience of a cystic fibrosis care center]

BACKGROUND AND OBJECTIVE: Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the…

Transition from paediatric to adult medical services for young people with chronic neurological problems

2003

Tags: 2003, Adolescent Transitions, Backlog, Journal Article, Journal Of Neurology, Neurosurgery, And Psychiatry, Pearce A, Tuffrey C

Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives

OBJECTIVES: To gauge the perspectives of adolescents and adults with cystic fibrosis (CF) and their parents regarding the transition from paediatric to adult-oriented health care. METHODS: Cross-sectional survey using an anonymous, semi-structured…

Transition care for young people with chronic illness

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…

Toward youth friendly services: a survey of young people in primary care

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…

The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease

AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part…

The role of partner relationships in the young person's adherence to the diabetes self-care regime

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…

The Role of Parental Monitoring in Understanding the Benefits of Parental Acceptance on Adolescent Adherence and Metabolic Control of Type 1 Diabetes

Objective: The study examined 1) whether the benefits of mothers' and fathers' accepting relationships with their adolescents on diabetic control were due to parental monitoring and 2) how parents together may provide sufficient acceptance and…

Tags: 2008, Adolescent Transitions, Backlog, Berg CA, Butler JM, Butner J, Diabetes Care, Donaldson D, Foster C, Journal Article, King G, Lindsay R, Murray M, Osborn P, Palmer DL, Swinyard M, Wiebe DJ

The ON TRAC model for transitional care of adolescents

This article describes the framework and clinical pathway for ON TRAC (Taking Responsibility for Adolescent/Adult Care), a model of transition care for adolescents with chronic health conditions, as applied to pediatric transplant transition. This…

Tags: 2006, Adolescent, Adolescent Health Services/organization & administration, Adolescent Transitions, Backlog, Child, Continuity Of Patient Care/organization & Administration, Critical Pathways, Humans, Journal Article, Models, Organ Transplantation/psychology, Organizational, Paone MC, Patient Care Planning/organization & administration, Progress In Transplantation (aliso Viejo, Calif.), Saewyc E, Wigle M

The Holocaust as a context for telling life stories

Using a narrative approach, this study explores the role of the Holocaust in the life stories of Survivors, contrasted with two comparison groups (one Jewish and one non-Jewish) whose direct experiences did not include surviving the Holocaust. Using…

The health-line--a method for collecting data on self-rated health over time: a pilot study

BACKGROUND: There is a need for an instrument to record a life-course perspective of self-rated health. AIM: To test the "health-line", a simple, comprehensive method of collecting data on self-rated health over time. METHOD: In 1996, a questionnaire…

The challenge of asthma in adolescence

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…

Tags: 2007, Adolescent, Adolescent Transitions, Asthma/diagnosis/mortality/therapy, Backlog, Bush A, de Benedictis D, Humans, Journal Article, Pediatric Pulmonology

The biographical impact of teenage and adolescent cancer

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…

Tags: 2007, Adolescent Transitions, Backlog, Chronic Illness, Grinyer A, Journal Article

The Adolescent Adjustment Profile (AAP) in comparisons of patients with obesity, phenylketonuria or neurobehavioural disorders

Psychosocial development in children with chronic disease is a key issue in paediatrics. This study investigated whether psychosocial adjustment could be reliably assessed with the 42-item Adolescent Adjustment Profile (AAP) instrument. The study…

Tags: 2008, Adjustment, Adolescent Transitions, Alm J, Backlog, Brodin U, Journal Article, Marcus C, Marild S, Neurobehavioural syndromes, Obesity, Olsson G, Phenylketonuria, Questionnaires, Rydelius PA

Telephone reminders improve adolescent clinic attendance: a randomized controlled trial

OBJECTIVES: To measure the effect of telephone reminders on adolescent clinic attendance. METHODS: Clinic bookings of adolescents were randomly assigned to either a telephone reminder one day prior to their appointment, or a routine booking (no…

Tags: 2002, Adolescent, Adolescent Transitions, Ambulatory Care Facilities/statistics & numerical data/utilization, Appointments and Schedules, Backlog, Bond LM, Female, Humans, Journal Article, Journal of Paediatrics and Child Health, Male, Reminder Systems, Sawyer SM, Telephone, Victoria, Zalan A

Browse Items (151 total)