Ewa-Lena Bratt

Forty years of quality-of-life research in congenital heart disease: Temporal trends in conceptual and methodological rigor

BACKGROUNDnThe first study on quality of life (QoL) in patients with congenital heart disease was published 40 years ago. Since then, the number of QoL articles on these patients has grown exponentially. We conducted a systematic literature review of all empirical studies on QoL in patients with congenital heart disease published since 1974, with the aim of determining the range of conceptual and methodological rigor of studies and identifying temporal trends in these parameters.nnnMETHODSnPubMed, Embase, and Cinahl were searched for empirical studies addressing QoL in children, adolescents, or adults with congenital heart disease, published between January 1, 1974, and December 31, 2014. We applied 10 review criteria that were previously developed by Gill and Feinstein in 1994 and further refined by Moons et al. in 2004. Overall, 234 articles were reviewed.nnnRESULTSnWe found slight but non-significant temporal improvements in conceptual and methodological rigor and in use of assessment methods. This indicates a trend toward a more professional and exacting approach in QoL assessments. However, the majority of articles still had substantial conceptual and methodological deficits. Furthermore, we observed that citation of the publications of Gill and Feinstein and Moons et al. in published QoL research is associated with higher quality scores, suggesting that these articles have a positive impact on conceptual and methodological caliber.nnnCONCLUSIONnDespite 40 years of QoL research in this field, this review shows that major weaknesses in methodological rigor remain highly prevalent, which may make QoL studies inconclusive.

Adolescents With Congenital Heart Disease and Their Parents : Needs Before Transfer to Adult Care.

Background:Patients with congenital heart disease (CHD) are in need of lifelong healthcare. For adolescents with CHD, this transfer to adult-care clinic can be difficult. Objective:The aim was to identify and describe the needs of adolescents with CHD and their parents during the transition before transfer to adult cardiologic healthcare. Methods:This study has an exploratory design with a qualitative approach, where 13 adolescents with CHD and their parents (n = 12) were individually interviewed. The interviews were analyzed with content analysis. Results:The analysis of the adolescents’ interviews resulted in 3 categories: change of relationships, knowledge and information, and daily living. The theme that emerged depicting the meaning of the categories found was Safety and control, indicating needs of continuity, knowledge, and taking responsibility. Analysis of the parents’ answers gave 2 categories: change of relationship and daily living. The theme that emerged was safety and trust, indicating needs of continuity and shifting responsibility. Conclusions:The transition must be carefully planned to ensure that adolescents can master new skills to manage the transfer to adult cardiologic healthcare. A structured program may facilitate and fulfill the needs of the adolescents and their parents, taking into consideration the aspects of trust, safety, and control. However, the content and performance of such a program must also be examined. We plan to undertake an extensive research project in the area, and this study will be a baseline for further research.

Transfer to Adult Care—Experiences of Young Adults with Congenital Heart Disease

More than 90% of children born with congenital heart disease survive into adulthood due to successes of cardiac surgery and medical management. Interviews with 16 young adults with congenital heart disease to explore their experiences of transfer from pediatric to adult care were performed. The analysis identified five themes; Feeling secure during the transfer process, Experiencing trust in the care, Expecting to be involved, Assuming responsibility for ones health is a process and Lack of knowledge leads to uncertainty. In conclusion; a structured and gradual transfer process was necessary to enable the informants to shoulder the responsibility for self-care.

Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care

AbstractThe aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14–18xa0years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents’ ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease.n Conclusion: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process.What is Known:• Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles.• Adolescents often have poor knowledge and understanding about their heart condition and the consequences.What is New:• Adolescents call for disease specific information regarding health issues of importance for them in daily life.• Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.

Person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood: a study protocol for a hybrid randomised controlled trial (STEPSTONES project)

Introduction When a young person grows up, they evolve from an independent child to an empowered adult. If an individual has a chronic condition, this additional burden may hamper adequate development and independence. Transition programmes for young persons with chronic disorders aim to provide the necessary skills for self-management and participation in care. However, strong evidence on the effects of these interventions is lacking. Therefore, as part of the STEPSTONES project (Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS), we propose a trial to assess the effectiveness of a structured, person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood. Methods/design STEPSTONES will use a hybrid experimental design in which a randomised controlled trial is embedded in a longitudinal, observational study. It will be conducted in 4 paediatric cardiology centres in Sweden. 2 centres will be allocated to the randomised controlled trial group, assigning patients randomly to the intervention group (n=63) or the comparison group (n=63). The other 2 centres will form the intervention-naïve control group (n=63). The primary outcome is the level of patient empowerment, as measured by the Gothenburg Young Persons Empowerment Scale (GYPES). Ethics and dissemination The study has been approved by the Regional Ethical Board of Gothenburg, Sweden. Findings will be reported following the CONSORT statement and disseminated at international conferences and as published papers in peer-reviewed journals. Trial registration number NCT02675361; pre-results.

Societal Norms and Conditions and Their Influence on Daily Life in Children With Type 1 Diabetes in the West Bank in Palestine

Purpose: To explore the experiences of daily life in children with type 1 diabetes (T1D) and their parents living in the West Bank in Palestine. Design and Methods: A qualitative study using thematic interviews was performed with 10 children with T1D and their parents (n = 10). Content analysis was performed with the assistance of NVIVO 10. Results: The overall theme was facing the social reality of diabetes. This was underpinned by two themes: stigmatization and social constraints. Facing the social reality of diabetes described children and their parents everyday life attempts to place themselves within the context of the disease and social context. Children and their parents described how stigmatization and social constraints impacted their daily life as a result of fear of disclosing the disease, which could affect their social status. Conclusion: These findings highlighted how daily life in children with T1D and their parents was highly affected by cultural impacts, especially as stigma related to the illness affected social interactions of female and male children/adolescents. Lack of knowledge and misunderstandings about T1D in society lead to negative consequences like poorer management of diabetes, and this becomes mediated by gender. Practical Implications: The findings suggest health care providers need to be aware of the cultural and social impact of T1D on childrens and parents daily life in order to meet their needs and challenges by providing appropriate interventions, strategies and support. HIGHLIGHTSCultural factors such as stigma impact daily life of Arab children with T1D and their parents.Lack of knowledge and misconceptions about T1D in society can lead to poorer management of diabetes.Social and cultural factors prevent young Arab women from adopting the life style needed to stay healthy

Health care providers’ attitudes towards transfer and transition in young persons with long term illness- a web-based survey

BackgroundTransition programs in health care for young persons with special health care needs aim to maximize lifelong functioning. Exploring health care professionals’ perspective may increase the possibility of successful implementation of transition programs. The aim was to survey health care professionals’ attitudes towards components and barriers on transition and transfer in young people with long-term medical conditions with special health care needs.MethodsA cross-sectional web-based survey was sent by e-mail to 529 physicians and nurses in Swedish pediatric and adult outpatient clinics. Response rate was 38% (nu2009=u2009201). The survey consisted of 59 questions regarding different aspects of components and barriers on transition and transfer. Descriptive statistics were computed to summarize demographic data and categorized responses. The Chi square test was used for comparison between proportions of categories.ResultsMost respondents agreed on the destinations of care for adolescents within their specialty. Age and psychosocial aspects such as maturity and family situations were considered the most important initiators for transfer. Joint meeting with the patient (82%); presence of a transition coordinator (76%) and a written individualized transfer plan (55%) were reported as important transition components. Pediatric care professionals found the absence of a transition coordinator to be more of a transition barrier than adult care professionals (pu2009=u20090.018) and also a more important transfer component (pu2009=u20090.017). Other barriers were lack of funding (45%) and limited clinical space (19%). Transition programs were more common in university hospitals than in regional hospitals (12% vs 2%, pu2009=u2009<0.001) as well as having a transition coordinator (12% vs 3%, pu2009=u20090.004).ConclusionThe findings highlight a willingness to work on new transition strategies and provide direction for improvement, taking local transition components as well as potential barriers into consideration when implementing future transition programs. Some differences in attitudes towards transitional care remain among pediatric and adult care professionals.

Do not forget the parents-Parents' concerns during transition to adult care for adolescents with congenital heart disease

BACKGROUNDnGrowing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents expectations and needs during their adolescents transition to adult care.nnnMETHODnSemi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18xa0years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.nnnRESULTSnThe analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.nnnCONCLUSIONnBeing prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young persons daily life would be given.

Assessing the level of evidence on transfer and transition in young people with chronic conditions: protocol of a scoping review

BackgroundLife-long specialized care is of the utmost importance to safeguard longevity as well as the quality of life in children diagnosed with a chronic condition (CC). Provision of life-long care, however, infers transfers to different settings in line with person’s development status. Young people with CC (10–25xa0years) will transfer care from a pediatric towards an adult-oriented care setting. As a transfer of care is associated with a change of care context, healthcare team, responsibilities, expectations, and roles, patients need to be prepared for this alteration. One type of preparatory intervention is the provision of transitional care. Transition prepares adolescents for the responsibilities associated with adult care and age through support, education, skills demonstration, and guidance. The past decades, increasing attention has been paid towards the concept of transfer and transition, both in clinical practice and research. Numerous consensus papers have been established, emphasizing the need for the establishment of a transition program for young patients with CC. To date, it remains, however, unclear what the overall level of evidence is on transfer and transition in this population. This scoping review aims to analyze and determine the level of evidence of published literature on transfer and transition of young people diagnosed with CC.MethodMEDLINE, CINAHL, Scopus, and Web of Science databases will be searched for relevant publications. Any publication in English, Spanish, German, or French, related to transfer and/or transition in young people with CC will be included. A three-staged approach will identify relevant papers, comprising systematic database searches, application of snowball method, and citation searching. Study selection will be performed through screening of titles/abstracts followed by a full-text assessment using a standardized selection form. Data extraction will be performed by two reviewers independently using a pilot-tested, standardized form. Descriptive statistics and content analysis will be applied to present the results. Bibliometric visualization techniques will be performed with VOS viewer®.DiscussionOur review will map the overall level of evidence of published literature on transfer and transition in young people with CC. It will provide guidance for future research initiatives, clinical practice, and policy makers.

Parental Uncertainty About Transferring Their Adolescent with Congenital Heart Disease to Adult Care

Abstract Aims To study parents levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. Background Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well‐prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility. Design A cross‐sectional study. Methods Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0–100). Data were collected between January ‐ August 2016. Potential correlates were assessed using the readiness for transition questionnaire and sociodemographic data. Results The mean parental uncertainty score was 42.5. Twenty‐four percent of the parents had a very low level of uncertainty (score 0–10) and 7% had a very high level (score 91–100). Overall, 26% of the mothers and 36% of the fathers indicated that they had not started thinking of the transfer yet. The level of uncertainty was negatively associated with the level of perceived overall readiness. Adolescents age, sex, CHD complexity, and parental age were not related to uncertainty. Conclusion A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care.