Deborah Hilderson

Transfer of Adolescents With Congenital Heart Disease From Pediatric Cardiology to Adult Health Care An Analysis of Transfer Destinations

OBJECTIVES The transfer of adolescents with congenital heart disease from pediatric to adult care was examined. The aims were to investigate where these adolescents received adult-centered care, to determine the proportion of patients with no follow-up and with no appropriate follow-up after leaving pediatric cardiology, and to explore the determinants of no follow-up and no appropriate follow-up. BACKGROUND Even after successful treatment, many patients require lifelong cardiac surveillance by specialized practitioners. Although guidelines describe the most appropriate level of follow-up, this is not always implemented in practice. METHODS A descriptive, observational study was performed, including 794 patients with congenital heart disease examined and/or treated at a tertiary care center. RESULTS Overall, 58 of the 794 patients included (7.3%) were not in follow-up. Cessation of follow-up was found in 2 of 74 patients with complex (2.7%), 31 of 448 patients with moderate (6.9%), and 25 of 272 patients with simple (9.2%) heart defects. Moreover, 684 patients (86.1%) remained in specialized follow-up. According to international guidelines, 81 patients (10.2%) did not receive the minimal level of cardiac care. Multivariable logistic regression revealed that male sex and no prior heart surgery were associated with no follow-up. Male sex, no prior heart surgery, and greater complexity of congenital heart disease were associated with no appropriate level of cardiac follow-up. CONCLUSIONS The proportion of patients in this study lost to follow-up was substantially lower than in other Western countries. Because only patient-related factors were examined with respect to loss to follow-up, further examination of patient-related, hospital-related, and healthcare-related determinants of lack of follow-up is needed.

Implementation of Transition Programs can Prevent Another Lost Generation of Patients with Congenital Heart Disease

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.

Transfer from paediatric rheumatology to the adult rheumatology setting: experiences and expectations of young adults with juvenile idiopathic arthritis

Adolescents with juvenile idiopathic arthritis (JIA) are transferred from paediatrics to adult-oriented healthcare when they reach early adulthood. Research on the extent to which patients’ expectations about the adult healthcare setting match their actual experience after transfer, may promote successful transfer from paediatrics to adult care. As part of the ‘Don’t Retard’ project (http://www.kuleuven.be/switch2/rheuma.html), experiences and expectations of young adults regarding their transfer from paediatric rheumatology to adult rheumatology were explored. A qualitative study was conducted using semi-structured, in-depth interviews of 11 patients with JIA, aged 18 to 30. Data were analysed using procedures inherent to the content analysis approach. For both concepts, experiences and expectations, three main themes emerged: ‘preparation’, ‘parental involvement’ and an ‘adapted setting for the late-adolescent or early adult’. The need for a gradual process covered the themes ‘preparation’ and ‘parental involvement’. Young people with JIA prefer to have a say in the moment of transfer and in the reduction of parental involvement. The majority of the participants like their parents’ presence at the first consultation at the adult rheumatology department. They expect a healthcare setting adapted to their needs and the possibility to meet peers in this setting. Sudden confrontation with older patients with severe rheumatoid arthritis at adult rheumatology was an unsettling experience for some of the young patients and they declared that better preparation is needed. This study enabled us to define three main themes important in transfer. These themes can facilitate healthcare professionals in developing specific interventions to prepare the young people to transfer, to regulate parental involvement and to arrange an adapted setting for them. Since we included patients who were in follow-up at one tertiary care centre, in which both paediatric and adult rheumatology care are located, the results of the study cannot be generalised to the entire population of patients with JIA.

Attitudes of rheumatology practitioners toward transition and transfer from pediatric to adult healthcare

We explored the attitudes of rheumatology practitioners toward the transition and transfer of adolescents with a rheumatic disorder from pediatric to adult healthcare. Rheumatology practitioners attending the Pediatric Rheumatology European Society (PRES) Congress in 2010 were asked to complete the Questionnaire about Attitudes of Rheumatology Practitioners Toward Transfer and Transition (QUARTT), an instrument that was specifically devised for this study. Overall, 138 healthcare professionals participated (response rate, 55.2%). Participants believed that when patients with an active rheumatic disorder reach adulthood, they should receive medical follow-up from an adult rheumatologist (87%). Only 19% thought that patients should remain under the surveillance of a pediatric rheumatologist. Several initiating factors for transfer were marked as important: readiness of the patient according to the caregiver (62%), age (61%), and psychosocial maturity (49%). A transfer meeting with the patient (76%), a referral letter (73%), and a medical transfer file (64%) were the most preferred transfer communication methods. Joint outpatient clinics, phone calls, and transfer meetings without the patient were considered to be less useful. Pediatric (94%) or adult (83%) rheumatologists, parents (81%), and nurse specialists (74%) were stated as the most important active participants in the transition process. Responders favored essential transition components because young people should be assisted on how to become independent (96%), how to deal with fatigue (91%), and how to establish medication adherence (90%). In conclusion, this study emphasized the importance of transfer to specialized rheumatology care of adolescents with an active rheumatic disease and highlighted transfer initiators and transfer communication tools.

Rationale, design and baseline data of a mixed methods study examining the clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: the DON'T RETARD project

Objectives To describe (1) the content of a transition programme for young people with juvenile idiopathic arthritis (JIA) designed as a brief intervention, (2) the rationale and design of a mixed-methods study evaluating the clinical impact of this transition programme and (3) to provide baseline data of the intervention group. Design An ‘embedded experimental’ design is used for the evaluation of the transition programme. A ‘one-group pretest-posttest, with a non-equivalent posttest-only comparison group design’ is used to quantitatively evaluate the impact of the transition programme, applying both longitudinal and comparative analyses. Subsequently, experiences of adolescents and their parents who participated in the experimental group will be analysed qualitatively using content analysis. Setting Participants in the intervention are recruited at a tertiary care centre in Belgium. The comparison group participants are recruited from one tertiary and three secondary care centres in Belgium. Participants The intervention group consists of 33 young people (25 females; 8 males) with a median age of 16 years. Main diagnoses are persistent or extended oligoarticular JIA (33%), polyarticular JIA (30%), enthesitis-related JIA (21%) or systemic arthritis (15%). Intervention The transition programme comprises eight key components: (1) transition coordinator; (2) providing information and education; (3) availability by telephone; (4) information about and contact with an adult care programme; (5) guidance of parents; (6) meeting with peers; (7) transfer plan; and (8) actual transfer to adult care. Primary and secondary outcomes The primary outcome is health status, as perceived by the adolescents. Secondary outcomes are health status, as perceived by the parents; medication adherence; illness-related knowledge; quality of life; fatigue; promotion of independence; support of autonomy; behavioural control and psychological control. Results At baseline, the median score was 69.2 (Q1=60.0;Q3=92.9) on psychosocial health and 68.8 (Q1=56.3; Q3=89.1) on physical health. Rheumatic-specific health scores ranged from 62.5 to 100. Conclusions We present the rationale and design of a study intended to evaluate a transition programme for adolescents with JIA as a brief intervention.

Coaching through transition: A challenge for critical care nurses

According to Meleis and colleagues, the core of nursing practice is to coach patients through transition(s) (1-3). Transitions are passages from one life phase, physical condition, or social role to another, resulting in a temporarily disconnectedness of the normal way of living, which demands an adjustment of the patient and the environment (1,4). As the primary caregivers for patients and their families, nurses need to support, educate and counsel patients, resulting in a successful transition experience for the patient. Furthermore, nurses have to facilitate the development of new skills, knowledge and behaviours in patients to achieve favourable transition outcomes. Three indicators for successful transition have been described: (i) a subjective sense of well-being perceived by the patient; (ii) mastery of new roles and behaviours necessary to cope with the new situation; and (iii) well-being in relationships that might be disrupted during the period of transition (2). Nurses are assumed to perform specific interventions aiming at preventing unhealthy behaviours, promoting well-being, increasing continuity of care and supporting the patient in achieving a new level of stability and self-esteem (2-4). Meleis and colleagues have identified four types of transition. First,

Current attitude of rheumatology practitioners on transition and transfer from pediatric to adult health care

We explored the attitudes of rheumatology practitioners toward the transition and transfer of adolescents with a rheumatic disorder from pediatric to adult healthcare. Rheumatology practitioners attending the Pediatric Rheumatology European Society (PRES) Congress in 2010 were asked to complete the Questionnaire about Attitudes of Rheumatology Practitioners Toward Transfer and Transition (QUARTT), an instrument that was specifically devised for this study. Overall, 138 healthcare professionals participated (response rate, 55.2%). Participants believed that when patients with an active rheumatic disorder reach adulthood, they should receive medical follow-up from an adult rheumatologist (87%). Only 19% thought that patients should remain under the surveillance of a pediatric rheumatologist. Several initiating factors for transfer were marked as important: readiness of the patient according to the caregiver (62%), age (61%), and psychosocial maturity (49%). A transfer meeting with the patient (76%), a referral letter (73%), and a medical transfer file (64%) were the most preferred transfer communication methods. Joint outpatient clinics, phone calls, and transfer meetings without the patient were considered to be less useful. Pediatric (94%) or adult (83%) rheumatologists, parents (81%), and nurse specialists (74%) were stated as the most important active participants in the transition process. Responders favored essential transition components because young people should be assisted on how to become independent (96%), how to deal with fatigue (91%), and how to establish medication adherence (90%). In conclusion, this study emphasized the importance of transfer to specialized rheumatology care of adolescents with an active rheumatic disease and highlighted transfer initiators and transfer communication tools.