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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease : A Randomized Controlled Trial
- 2023
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Ingår i: Journal of Adolescent Health. - : Elsevier. - 1054-139X .- 1879-1972.
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Adolescents with congenital heart disease transition from childhood to adulthood and transfer from pediatric-oriented to adult-oriented care. High-level empirical evidence on the effectiveness of transitional care is scarce. This study investigated the empowering effect (primary outcome) of a structured person-centered transition program for adolescents with congenital heart disease and studied its effectiveness on transition readiness, patient-reported health, quality of life, health behaviors, disease-related knowledge, and parental outcomes e.g., parental uncertainty, readiness for transition as perceived by the parents (secondary outcomes). Methods: The STEPSTONES-trial comprised a hybrid experimental design whereby a randomized controlled trial was embedded in a longitudinal observational study. The trial was conducted in seven centers in Sweden. Two centers were allocated to the randomized controlled trial-arm, randomizing participants to intervention or control group. The other five centers were intervention-naïve centers and served as contamination check control group. Outcomes were measured at the age of 16 years (baseline), 17 years, and 18.5 years. Results: The change in empowerment from 16 years to 18.5 years differed significantly between the intervention group and control group (mean difference = 3.44; 95% confidence interval = 0.27–6.65; p = .036) in favor of intervention group. For the secondary outcomes, significant differences in change over time were found in parental involvement (p = .008), disease-related knowledge (p = .0002), and satisfaction with physical appearance (p = .039). No differences in primary or secondary outcomes were detected between the control group and contamination check control group, indicating that there was no contamination in the control group. Discussion: The STEPSTONES transition program was effective in increasing patient empowerment, reducing parental involvement, improving satisfaction with physical appearance, and increasing disease-related knowledge. © 2023 Society for Adolescent Health and Medicine
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- Moons, Philip, 1968, et al.
(författare)
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Discontinuity of Cardiac Follow-Up in Young People With Congenital Heart Disease Transitioning to Adulthood: A Systematic Review and Meta-Analysis.
- 2021
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Ingår i: Journal of the American Heart Association. - 2047-9980. ; 10:6
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Tidskriftsartikel (refereegranskat)abstract
- Background The majority of people born with congenital heart disease require lifelong cardiac follow-up. However, discontinuity of care is a recognized problem and appears to increase around the transition to adulthood. We performed a systematic review and meta-analysis to estimate the proportion of adolescents and emerging adults with congenital heart disease discontinuing cardiac follow-up. In pooled data, we investigated regional differences, disparities by disease complexity, and the impact of transition programs on the discontinuity of care. Methods and Results Searches were performed in PubMed, Embase, Cinahl, and Web of Science. We identified 17 studies, which enrolled 6847 patients. A random effects meta-analysis of single proportions was performed according to the DerSimonian-Laird method. Moderator effects were computed to explore sources for heterogeneity. Discontinuity proportions ranged from 3.6% to 62.7%, with a pooled estimated proportion of 26.1% (95% CI, 19.2%-34.6%). A trend toward more discontinuity was observed in simple heart defects (33.7%; 95% CI, 15.6%-58.3%), compared with moderate (25.7%; 95% CI, 15.2%-40.1%) or complex congenital heart disease (22.3%; 95% CI, 16.5%-29.4%) (P=0.2372). Studies from the United States (34.0%; 95% CI, 24.3%-45.4%), Canada (25.7%; 95% CI, 17.0%-36.7%), and Europe (6.5%; 95% CI, 5.3%-7.9%) differed significantly (P=0.0004). Transition programs were shown to have the potential to reduce discontinuity of care (12.7%; 95% CI, 2.8%-42.3%) compared with usual care (36.2%; 95% CI, 22.8%-52.2%) (P=0.1119). Conclusions This meta-analysis showed that there is a high proportion of discontinuity of care in young people with congenital heart disease. The highest discontinuity proportions were observed in studies from the United States and in patients with simple heart defects. It is suggested that transition programs have a protective effect. Registration URL: www.crd.york.ac.uk/prospero. Unique identifier: CRD42020182413.
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- Skogby, Sandra, 1989, et al.
(författare)
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Borttappad i vården
- 2018
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Ingår i: Nationella utbildningsdagar för vårdprofessioner inom kardiologi VIC - Medfödda hjärtfel "Vårdens framgångar ger nya möjligheter och utmaningar".
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)
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- Skogby, Sandra, 1989
(författare)
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Continued follow-up care - during transition and transfer of young people with congenital heart disease
- 2022
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Although life-long follow-up care and transfer from paediatric to adult facilities are recommended for most young people with congenital heart dis-ease, a substantial proportion present with discontinued follow-up care, which is associated with adverse outcomes and requires active prevention. The overall aim of this thesis was to scrutinize discontinuation of follow-up care among youths with congenital heart disease and gain a deeper understanding of associated factors on patient, hospital, and healthcare system levels, as well as provide increased clarity around the concept of discontinuation of follow-up care. The methods applied include register and survey-based statistical analyses (I & III), individual semi-structured interviews with patients and healthcare providers subjected to qualitative content analysis (II & III) and a conceptual inquiry of the concept of discontinuation in published literature using a modified summative content analysis and a Delphi-inspired expert evaluation (IV). Findings: Study I showed a relatively low proportion of discontinuation in the included centres, clear differences in proportions of discontinuation across hospitals and an association between paediatric outpatient volumes and continued follow-up care after transfer. The difference in proportions of discontinuation across the hospitals indicates the relevance of hospital-related factors influencing discontinuation of follow-up care. In Study II, patients’ perceptions and experiences of factors affecting continued follow-up care after transfer included three main categories, “Motivation for follow-up care”, “Participation in care and sense of connectedness with health care provider” and “Care accessibility”. Study III showed a low proportion of no follow-up at two Belgian centres. Furthermore, healthcare providers’ perceptions and experiences of factors perceived to affect continued follow-up care after transfer included the categories “Care structure”, “Care processes” and “Patients’ characteristics and circumstances”. In Study IV, three different types of discontinuation of follow-up care emerged from the analysis of published literature, including “Untraceability”, “Lost to follow-up care” and “Gap(s) in follow-up care”, the latter two being distinguished from one another through time intervals versus time periods and whether patients were currently engaged in care or not. In conclusion, a plethora of factors affecting continuity of patient care was raised, including patient, hospital, and healthcare system factors, which likely trigger each other, creating synergetic effects. Agreement between patients and health care providers regarding relevant factors was high and many of the factors raised could possibly be tackled through clear structures, provision of sufficient health care provider resources, competencies, and skills, as well as transitional care interventions. Furthermore, expansion of the concept of discontinuation of follow-up care to include personal experiences as well as informational and relation aspects, is deemed mandatory.
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