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- Acuña Mora, Mariela, 1990, et al.
(författare)
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The longitudinal association between patient empowerment and patient-reported outcomes: What is the direction of effect?
- 2022
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Ingår i: PloS one. - : Public Library of Science (PLoS). - 1932-6203. ; 17:11
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Tidskriftsartikel (refereegranskat)abstract
- Theoretical literature and cross-sectional studies suggest empowerment is associated with other patient-reported outcomes (PROs). However, it is not known if patient empowerment is leading to improvements in other PROs or vice versa.The present study aimed to examine the direction of effects between patient empowerment and PROs in young persons with congenital heart disease (CHD).As part of the STEPSTONES-CHD trial, adolescents with CHD from seven pediatric cardiology centers in Sweden were included in a longitudinal observational study (n = 132). Data were collected when patients were 16 (T0), 17 (T1) and 18 ½ years old (T2). The Gothenburg Young Persons Empowerment Scale (GYPES) was used to measure patient empowerment. Random intercepts cross-lagged panel models between patient empowerment and PROs (communication skills; patient-reported health; quality of life; and transition readiness) were undertaken.We found a significant cross-lagged effect of transition readiness over patient empowerment between T1 and T2, signifying that a higher level of transition readiness predicted a higher level of patient empowerment. No other significant cross-lagged relationships were found.Feeling confident before the transition to adult care is necessary before young persons with CHD can feel in control to manage their health and their lives. Clinicians interested in improving patient empowerment during the transitional period should consider targeting transition readiness.
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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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- Bratt, E., et al.
(författare)
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The STEPSTONES transition program for adolescents with congenital heart disease is effective in improving patient empowerment : a randomized controlled trial
- 2022
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Ingår i: European Heart Journal. - : Oxford University Press. - 0195-668X .- 1522-9645. ; 43:Suppl. 2, s. 2745-2745
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: Congenital heart disease (CHD) is the most common birth defect, with a global birth prevalence of 8.2 per 1000 new-borns. Improvements in the diagnosis and treatment of children with CHD have resulted in increasing life prospects, with more than 90% surviving into adulthood today. To ensure expert lifetime care, patients need to transfer from paediatric-oriented care to adult-oriented care. At the same time, they need to transition from a dependent child with CHD to an independent adult who can manage living with CHD. Thus, during adolescence, patients with CHD need to acquire knowledge and skills to independently manage their health, while simultaneously experiencing a series of physical, cognitive and social changes. To facilitate this phase, transitional care is needed. However, high-level empirical evidence on the effectiveness of transitional care is scarce.Purpose: To investigate the empowering effect (primary outcome) of a structured person-centred transition programme for adolescents with CHD, and to study the effectiveness on transition readiness, patient-reported health, quality of life, health behaviours, disease-related knowledge, parental uncertainty, and parental perception of transition readiness (secondary outcomes).Methods: The STEPSTONES-CHD trial comprised a hybrid experimental design, in which a randomized controlled trial (RCT) was embedded in a longitudinal, observational study. The trial was conducted in seven CHD centres in Sweden. Two centres were allocated to the RCT-arm, randomising participants to intervention (IG) or control group (CG). The other five centres were intervention-naïve centres and served as contamination check control group (CCCG). Outcomes were measured at the age of 16 y (T0; baseline), 17y (T1) and 18.5y (T2).Results: The change in empowerment from T0 to T2 differed significantly between the IG and CG (mean difference=3.44; 95% CI: 0.27–6.65; p=0.036) in favour for IG. For the secondary outcomes, significant differences in change over time were found in parental involvement (p=0.008), CHD-specific knowledge (p=0.0002), and satisfaction with physical appearance (p=0.039). No differences in primary or secondary outcomes were detected between CG and CCCG, indicating that there was no contamination in the CG.Conclusion: The STEPSTONES-CHD trial demonstrated the effectiveness of a person-centred transition programme in empowering adolescents with CHD. Furthermore, parental involvement, satisfaction with physical appearance and CHD-related knowledge were positively influenced. This trial provides empirical underpinnings for the implementation of transition programmes for afflicted adolescents.
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- Fadl, Shalan, et al.
(författare)
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The highest mortality rates in childhood dilated cardiomyopathy occur during the first year after diagnosis
- 2018
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Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 107:4, s. 672-677
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of the study was to assess the incidence, mortality and morbidity of dilated cardiomyopathy (DCM) and non-compaction of the left ventricle (LVNC) in Swedish children.METHODS: We reviewed hospital records of all children with dilated cardiomyopathy (DCM) or left ventricular non-compaction cardiomyopathy (LVNC) up to the age of 18 in the healthcare region of western Sweden from 1991 to 2015.RESULTS: In total, 69 cases (61% males) were identified. The combined incidence of DCM and LVNC was 0.77 (95% CI 0.59-0.96) per 100,000 person years. Children were divided into six groups and their outcomes were analysed depending on their aetiology. Idiopathic DCM was reported in 43% and familial dilated and left ventricular non-compaction aetiology was present in 32%. DCM due to various diseases occurred in 8%. DCM associated with neuromuscular diseases was present in 16%. The overall risk of death or receiving transplants in children with idiopathic and familial DCM was 30% over the study period and 21% died in the first year after diagnosis.CONCLUSION: The combined incidence of DCM and LVNC was similar to previous reports. Most children with idiopathic DCM presented during infancy and mortality was highest during the first year after diagnosis.
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- Sigmundsson, Freyr Gauti, 1972-, et al.
(författare)
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The unique challenges of Brugada syndrome in spinal deformity surgery
- 2021
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Ingår i: Interdisciplinary Neurosurgery. - : Elsevier. - 2214-7519. ; 25
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Tidskriftsartikel (refereegranskat)abstract
- Brugada Syndrome (BrS) is a genetic condition associated with ventricular fibrillation and sudden cardiac death. In BrS, several pharmacological agents may increase the risk for arrhythmia and total intravenous anesthesia with propofol (TIVA) may be contraindicated due to the increased risk of perioperative cardiac arrest. Anesthesia with halogenated volatile agents has to be used instead, making monitoring of sensory and motor evoked potentials in spine surgery problematic. Furthermore, hyperthermia may induce ventricular arrhythmia in BrS, thus making temperature control of paramount importance. The purpose of this paper is to describe the particular challenges of anesthesia and intraoperative neuromonitoring associated with corrective spinal surgery in an adolescent girl with BrS. We present an analysis of a multidisciplinary approach to performing corrective spine surgery in an otherwise healthy 14-year-old girl with scoliosis. Before surgery, multidisciplinary meetings were conducted, including anesthesia and intensive care, pediatric cardiology as well as the spine team. The surgery was performed with inhalation anesthesia using sevoflurane and cardiac monitoring. Continuous somatosensory potentials were monitored as well as motor evoked potentials. The patient underwent corrective surgery from Th3 to L2. With a multidisciplinary team approach involving anesthesia and cardiology outlining the appropriate precautions, scoliosis correction with intraoperative neuromonitoring, can be safely performed in patients with BrS using inhalation anesthesia.
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- Skogby, Sandra, 1989, et al.
(författare)
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Outpatient volumes and medical staffing resources as predictors for continuity of follow-up care during transfer of adolescents with congenital heart disease
- 2020
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Ingår i: International Journal of Cardiology. - : Elsevier. - 0167-5273 .- 1874-1754. ; 310, s. 51-57
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Providing continuous follow-up care to patients with congenital heart disease (CHD) remains a challenge in many settings. Previous studies highlight that patients with CHD experience discontinuation of follow-up care, but mainly describe a single-centre perspective, neglecting inter-institutional variations. Hospital-related factors above and beyond patient-related factors are believed to affect continuity of care. The present multicentre study therefore investigated (i) proportion of "no follow-up care"; (ii) transfer destinations after leaving paediatric cardiology; (iii) variation in proportions of no follow-up between centres; (iv) the association between no follow-up and outpatient volumes, and (v) its relationship with staffing resources at outpatient clinics.METHODS: An observational, multicentre study was conducted in seven university hospitals. In total, 654 adolescents with CHD, born between 1991 and 1993, with paediatric outpatient visit at age 14-18 years were included. Transfer status was determined 5 years after the intended transfer to adult care (23y), based on medical files, self-reports and registries.RESULTS: Overall, 89.7% of patients were receiving adult follow-up care after transfer; 6.6% had no follow-up; and 3.7% were untraceable. Among patients in follow-up care, only one remained in paediatric care and the majority received specialist adult CHD care. Significant variability in proportions of no follow-up were identified across centres. Higher outpatient volumes at paediatric outpatient clinics were associated with better continued follow-up care after transfer (OR = 1.061; 95% CI = 1.001 - 1.124). Medical staffing resources were not found predictive.CONCLUSION: Our findings support the theory of hospital-related factors influencing continuity of care, above and beyond patient-related characteristics.
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