Adult Care (adult + care)

Distribution by Scientific Domains

Selected Abstracts

Adolescent Transition to Adult Care in Solid Organ Transplantation: A consensus conference report

L. E. Bell
Transition of care from pediatric to adult-oriented health care providers is difficult for children with special health care needs. Children who have received solid organ transplants and their providers experience the same difficulties and frustrations as children with other major illnesses. A consensus conference was organized by several transplant organizations to identify major issues in this area and recommend possible approaches to easing the process of transition for solid organ transplant recipients. This report summarizes the discussions and recommendations. [source]

Health-care problems of Turner syndrome in the adult woman: a cross sectional study of a Victorian cohort and a case for transition

C. C. Pedreira
Abstract The aim of this study was to assess current care and to survey comorbidity in a cohort of 39 adult women with Turner syndrome in Victoria. Patients with Turner syndrome (TS) drift away from medical care as they achieve adulthood, despite the need for regular surveillance and management of associated conditions, which would reduce morbidity and prevent complications. Clinical assessment was undertaken for 39 women with TS, mean age 30.1 (11.7) years and information was gathered through personal communication regarding past growth hormone use, oestrogen treatment, hearing loss and health problems. Twenty-four (63.2%) had regular follow-up, but only 17 (43.6%) had adequate recommended surveillance for comorbidities. Forty-three percent had two or more cardiovascular risk factors. Thirty-four (87.2%) were identified with one or more associated disorders. Uterine size was of normal adult dimensions in patients who had received oestrogen before age of 15 years. Adult care for adults with TS is suboptimal and assessment of comorbidities remains sporadic. Adequate transition guidelines and patient education are needed for long-term management of women with TS, to impact on quality of life and longevity. [source]

The Long Road to Better ACHD Care

Gary Webb MD
ABSTRACT The care of adult patients with congenital heart defects in the United States is spotty at best, and needs to improve greatly if the needs of these patients are to be met. The care of American children with congenital heart defects is generally excellent. Pediatric cardiac services are well established and well supported. The care of adults with congenital heart disease (CHD) is well established in only a few American centers. While there are an increasing number of clinics, they are generally poorly resourced with relatively few patients. If located in adult cardiology programs, they are usually minor players. If located in pediatric cardiac programs, they are usually minor players as well. Training programs for adult CHD (ACHD) caregivers are few, informal, and poorly funded. To improve the situation, we need perhaps 25 well-resourced and well-established regional ACHD centers in the United States. We need to stop the loss to care of CHD patients at risk of poor outcomes. We need to educate patients and families about the need for lifelong and skilled surveillance and care. We need to effect an orderly transfer from pediatric to adult care. We need to strengthen the human resource infrastructure of ACHD care through the training and hiring of healthcare professionals of a quality equivalent to those working in the pediatric care environment. We need to demonstrate that adult care is high quality care. We need more high-quality ACHD research. The ACHD community needs to establish its credibility with pediatric cardiac providers, adult cardiology groups, with governments, with professional organizations, and with research funding agencies. Accordingly, there is a need for strong political action on behalf of American ACHD patients. This must be led by patients and families. These efforts should be supported by pediatric cardiologists and children's hospitals, as well as by national professional organizations, governments, and health insurance companies. The goal of this political action should be to see that ACHD patients can receive high-quality lifelong surveillance, that we lose fewer patients to care, and that the staff and other services needed are available nationwide. [source]

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Nicola Iles RN MSc
Abstract The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi-structured interviews were conducted with 50 young people with CF aged 13,24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people's homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non-clinical practical and emotional support; (2) Acting as ,troubleshooters' in times of health-related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as ,protectors' of their children. Young people and service staff expressed tensions in managing parental involvement in post-paediatric consultations and the degree to which parents should be aware of their offspring's deteriorating health and social concerns. Parental anxiety and over-involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these ,new' ageing populations. [source]

Transition in chronic illness: Who is going where?

Katharine S Steinbeck
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 optimal management. We report on a data collection exercise from the New South Wales Greater Metropolitan Clinical Taskforce Transition Program. Methods: Data were collected between August 2004 and October 2005 through face-to-face interviews with over 200 clinicians in 68 clinical services in tertiary paediatric hospitals in New South Wales, providing information on approximately 4200 patients. Results: Sixty-eight services kept a database on patients with chronic illness but less than half were electronic. Eight services (12%) could specifically identify patients in the active phase of transition on their databases. The five most prevalent clinical groups requiring transition to adult specialist health care (excluding cerebral palsy and developmental disability) were diabetes, other endocrinology, neurology, spina bifida and gastroenterology. Conclusions: There are large numbers of young people with chronic illness and disability who need effective transition to long-term adult care. This study has enabled the identification of paediatric aspects of the transition process that require attention. [source]

Sickle cell disease in the United States: Looking back and forward at 100 years of progress in management and survival,

Hari Prabhakar
The past 100 years since James Herrick's first description of sickle cell disease in the United States have been characterized by the gradual development of management strategies. We review the progress in sickle cell disease management in the United States over the past 100 years, with emphasis on the diverse forces surrounding advances in disease management. Mortality and survival data are presented chronologically, with an attempt to highlight improvements in survival associated with specific advancements for pediatric and adult care. Finally, the future course for sickle cell disease management is explored, given the continued work in advancing the field. Am. J. Hematol. 2010. 2010 Wiley-Liss, Inc. [source]

Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views,

Michael P. Boyle MD
Abstract Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the development of CF-specific transition guidelines, an anonymous pretransition questionnaire and posttransition interview were used to assess the concerns and expectations of 60 CF patients and their parents as they went through the transition from pediatric to adult care. Along with demographic and clinical information, respondents were asked to rate on a scale of 1,5 their general attitude toward, or level of concern on 22 questions involving transition concerns, adult program expectations, and general view of transition. The two most important concerns identified by patients prior to transition to adult care were potential exposure to infection (3.4,,1.3) and having to leave their previous caregivers (3.4,,1.0). Introduction to the adult CF team prior to transition was associated with significantly lower levels of concern in all areas, particularly about having to leave previous caregivers (3.9,,0.7 vs. 2.5,,0.6, P,<,0.004). Age, gender, severity of lung disease, and age at diagnosis were not predictive of level of concern for any area. Parents' most significant concern was ability of their child to care for their CF independently, a concern their children did not share (4.0,,1.1 vs. 1.5,,0.5, P,<,0.0001). As their most important expectations for the adult program, patients identified ready phone access to a nurse (4.9,,0.6) and education about adult CF issues (4.6,,0.7). The overall attitude toward the development of an adult CF program was overwhelmingly positive for both patients (4.9,,0.7) and parents (4.9,,0.3). By allowing patients to interact with the adult team prior to transition and developing transition protocols which address CF-specific issues like infection control and fertility, successful transition from pediatric to adult cystic fibrosis care can be accomplished. Pediatr Pulmonol. 2001; 32:428,436. 2001 Wiley-Liss, Inc. [source]

The AJT Report: News and issues that affect organ and tissue transplantation

This month, The AJT Report reviews programs designed to transition adolescent transplant patients to adult care, as well as the heart allocation system and a new approach to double-lung transplant. [source]

Perceptions of Transitional Care Needs and Experiences in Pediatric Heart Transplant Recipients

S. J. Anthony
Survival following pediatric heart transplantation (HTx) continues to improve. The transition from pediatric to adult care is becoming a pivotal stage in the ongoing medical management of this population. Published data support enhanced outcomes for adolescent patients with increased attention to transitional care. The purpose of this study was to explore the ,transition experience' of adolescent HTx recipients and families. All teens (12,18 years) and parents at a single-center HTx program were invited to participate in semistructured interviews. Qualitative, phenomenological methodology was used to build theoretical knowledge and guided the data collection and analysis. The study population included 14 patients (7 males) with a mean age of 15.7 1.8 years (11.7,17.8 years) and at a mean of 4.1 3.3 years post-HTx (0.3,9.2 years) at the time of study participation. Major themes identified included: (i) adolescent disinterest and apathy regarding transition to adult care versus parental anxiety about their child's eventual departure from the pediatric transplant center, (ii) perceived differences in pediatric versus adult care and (iii) identification of strategies described as helpful in facilitating the transition. Understanding the experiences and perceptions of adolescent HTx recipients and their parents is crucial to planning effective transitional care and necessary for evidenced-based practice. [source]

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

L. K. Tuchman
Abstract Background Effective means of transitioning adolescent patients with chronic illness from paediatric to adult medical care are poorly documented and supported by limited evidence. The purpose of this study is to describe expectations and concerns of adolescents with chronic illness regarding transition from subspecialty paediatric to adult-centred care during the transition process in order guide effective programme design and implementation. Methods Qualitative content and thematic analysis of semi-structured individual interviews with 22 adolescents with chronic illness, including cystic fibrosis, sickle cell disease, juvenile rheumatoid arthritis, and inflammatory bowel disease. Interviews took place at 1,3 time points over an 18-month study period. Results Transition topics included: timing of transfer to adult care, the transition process, attitudes about transition, and factors that might aid transition. During the study period, one-third of participants made the transition to adult-oriented health care. All participants who had transitioned to adult-oriented care reported participating in a structured transition programme. Concerns of those who had not initiated the transition process centred on re-establishing relationships and bringing a new team ,up to speed'. Most adolescents anticipating transfer to adult care identified only downsides and felt unprepared to transition at the time of the interview. Subjects who had transitioned noted benefits of the adult-oriented system, even if they had been ambivalent prior to transfer of care. Participants suggested that earlier discussions about transition, opportunities to meet new healthcare teams and visits to adult-oriented venues prior to transition might aid in the transition process. Conclusions Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult-oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions. [source]

ADHD and transition to adult services , the experience of community paediatricians

H. Marcer
Abstract Background Attention Deficit Hyperactivity Disorder (ADHD) is now recognized as a disorder that can persist into adulthood, and therefore, there is a need for transitional care. Aim To find out about the experiences of community pediatricians across the UK when transferring patients with ADHD to adult care. Method A questionnaire was sent out to 100 consultant community pediatricians asking about their experiences. Results The majority of respondents thought a proportion of their patients would require referral to adult services and only 22% were aware of a dedicated clinic for adults in their area. Many had tried to address the issue locally often with little success. Conclusion There is a gap in provision of services for young people with ADHD when they leave pediatric care, with many pediatricians struggling to find appropriate ongoing care for their patients. Commissioners need to address the problem. [source]