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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Continuing pregnancy following a prenatal diagnosis of a cardiac defect: What support do parents need?
- 2015
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Ingår i: Cardiology 2015. 18th Annual Update on Pediatroc and Congenital Cardiovascular Disease. Challenges and Dilemmas. Feb 11-15, 2015. Scottsdale, Arizona, US..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Purpose To explore pregnant women´s/couples’ experiences of counseling and need for support during continued pregnancy following a prenatal diagnosis of congenital heart disease (CHD). Conceptual framework Couples choosing continued pregnancy need support from the time of prenatal diagnosis until delivery. Method Design: Qualitative study, using in-depth interviews 4-8 weeks after prenatal diagnosis. Setting: A tertiary center fetal cardiology unit in Sweden Sample: 12 pregnant women and their partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect in their fetus. Data analysis: Qualitative content analysis. Major findings The analysis resulted in four themes: Making the decision: Short waiting time for specialist evaluation together with clear, honest and straightforward information was essential. The importance of knowledge: Parents called for written information together with a high-quality regulated website with information about CHD. The importance of support: Continued and easy access, throughout pregnancy, to health care professionals, including a pediatric specialist nurse, was important. Other parents with similar experiences and social media were also valuable sources of support. Future and daily life: Practical and economical issues during the hospital stay and the initial period after the hospital stay were common concerns. Conclusion The results provided valuable knowledge of how to improve information and support during pregnancy. Short waiting time from first suspicion to definitive diagnosis and continued support throughout pregnancy emphasizing the role of the pediatric cardiology specialist nurse was important. Web-based information was warranted Clinical implications These results provide important information for a future intervention study of a structured follow-up program in collaboration between antenatal- and pediatric cardiac caregivers.
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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease
- 2019
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Ingår i: Cardiology in the Young. - 1047-9511 .- 1467-1107. ; 29:11, s. 1328-1334
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: A diagnosis of congenital heart disease (CHD) in offspring triggers psychological distress in parents. Results of previous studies have been inconsistent regarding the psychological impact of a prenatal versus a postnatal diagnosis. The aim of this study was to evaluate the influence of the time of diagnosis on levels of parental distress. Methods: Pregnant women and their partners with a fetus diagnosed with complex CHD, parents of children with postnatally diagnosed CHD, and pregnant women and their partners with uncomplicated pregnancies were invited to participate. Data were collected during pregnancy and 2–6 months after delivery using the Hospital Anxiety and Depression Scale, sense of coherence, life satisfaction, and Dyadic Adjustment Scale. Results: During pregnancy, the prenatal group scored lower sense of coherence compared to controls (p=0.044). Postnatally the prenatal group scored lower on sense of coherence compared to the postnatal group and controls (p=0.001; p=0.001). Postnatally, the prenatal and postnatal groups had higher levels of anxiety compared to controls (p=0.025; p=0.0003). Life satisfaction was lower in the prenatal group compared to that in the postnatal group and in controls (p=0.000; p=0.0004). Conclusion: Parents with a prenatal diagnosis of CHD in offspring report a low sense of coherence already during pregnancy which decreased further at follow-up. The same group reported a lower satisfaction with life compared to parents of a child with postnatal diagnosis of CHD and parents of a healthy child. This motivates further efforts to improve counselling and support during pregnancy and for parents after a prenatal diagnosis.
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- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease - a qualitative study in a Swedish context
- 2015
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Ingår i: BMC Pregnancy and Childbirth. - : Springer Science and Business Media LLC. - 1471-2393. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- Background: Prenatal screening for foetal cardiac abnormalities has been increasingly practiced in Sweden during the last 25 years. A prenatal diagnosis may have medical benefits but may also cause sustained parental psychological distress. The aim of this study was to explore pregnant women’s, and their partner’s, experiences of counselling and need for support during continued pregnancy following a prenatal diagnosis of a cardiac defect. A second aim was to use this information to propose a structured follow-up programme for continued support after the first counselling. Method: Design: Qualitative study, using interviews performed 5–9 weeks after a prenatal diagnosis of congenital heart disease. Setting: A tertiary foetal cardiology unit in Sweden Sample: Six pregnant women and their 6 partners, consecutively recruited after a prenatal diagnosis of an isolated and significant cardiac defect. Data analysis: Qualitative content analysis. Results: The analysis resulted in three themes. 1/ Counselling and making a decision - the importance of knowledge and understanding: Short waiting time for specialist evaluation together with clear and straightforward information was essential. Parents called for written information together with a high-quality website with relevant information about congenital heart disease. 2/ Continued support during pregnancy: Continued and easy access to health care professionals, including a paediatric specialist nurse, throughout pregnancy, was important. Contact with couples with similar experiences and social media were also considered valuable sources of support. 3/ Next step – the near future: Practical and economical issues during the postnatal hospital stay and the initial period following the hospital stay were common concerns. Conclusions: The following aspects should be considered in a structured follow up program during pregnancy after a prenatal diagnosis of CHD; written information, access to a safe web-site with information of high quality in their native language, support from parents with similar experiences and continued contact with a specialist liaison nurse with experience of paediatric cardiology.
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- de-Wahl Granelli, Anne, 1970, et al.
(författare)
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Impact of pulse oximetry screening on the detection of duct dependent congenital heart disease: a Swedish prospective screening study in 39,821 newborns.
- 2009
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Ingår i: BMJ (Clinical research ed.). - 1468-5833. ; 338
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To evaluate the use of pulse oximetry to screen for early detection of life threatening congenital heart disease. DESIGN: Prospective screening study with a new generation pulse oximeter before discharge from well baby nurseries in West Götaland. Cohort study comparing the detection rate of duct dependent circulation in West Götaland with that in other regions not using pulse oximetry screening. Deaths at home with undetected duct dependent circulation were included. SETTING: All 5 maternity units in West Götaland and the supraregional referral centre for neonatal cardiac surgery. PARTICIPANTS: 39,821 screened babies born between 1 July 2004 and 31 March 2007. Total duct dependent circulation cohorts: West Götaland n=60, other referring regions n=100. MAIN OUTCOME MEASURES: Sensitivity, specificity, positive and negative predictive values, and likelihood ratio for pulse oximetry screening and for neonatal physical examination alone. RESULTS: In West Götaland 29 babies in well baby nurseries had duct dependent circulation undetected before neonatal discharge examination. In 13 cases, pulse oximetry showed oxygen saturations
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- Ekman-Joelsson, Britt-Marie, 1956, et al.
(författare)
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Congenital heart disease does not entail an increased risk for severe COVID-19
- 2023
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 112:2, s. 286-289
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Tidskriftsartikel (refereegranskat)abstract
- Aim To analyse the risk of developing serious disease or death due to COVID-19 among patients who underwent heart surgery during childhood. Methods A retrospective combined register and patient file study. We identified all individuals who had undergone surgery for congenital heart disease in childhood between 1994 and 2019 in our Local Surgical Register that covers half of the Swedish population. This effort was cross-tabulated with the diagnosis of COVID-19 entered in the National Register of Diagnoses in Sweden from 1 March 2020 to 1 March 2021. Severe disease was defined as treatment at an intensive care unit (ICU). Results We identified 3950 individuals, and the median age at follow-up was 16 years (1-44). A total of 32 patients were diagnosed with COVID-19. Five of them were hospitalised for more than 2 days (5-32 days). Two adults required treatment at an ICU; both had additional comorbidity and one died. The corresponding number of ICU stays for this age range in Sweden was 2020 approximately 0.13/1000 person-years, reported from The Swedish Intensive Care Registry. Conclusions There was no increased rate of severe COVID-19 among individuals who had undergone surgery for congenital heart disease in childhood. Additional comorbidity is related to outcome.
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- Ekman-Joelsson, Britt-Marie, 1956, et al.
(författare)
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Exercise performance after surgery for pulmonary atresia and intact ventricular septum.
- 2009
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Ingår i: Pediatric cardiology. - : Springer Science and Business Media LLC. - 1432-1971 .- 0172-0643. ; 30:6, s. 752-62
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Tidskriftsartikel (refereegranskat)abstract
- The objective of this study was to assess exercise performance in subjects born in Sweden between 1980 and 1995 and undergoing surgery for pulmonary atresia and intact ventricular septum and to identify determinants of exercise performance. Twenty-seven subjects, 16 with biventricular repair and 11 with univentricular palliation, and 28 age- and sex-matched controls completed cardiopulmonary exercise and lung function testing. Peak oxygen uptake was determined using a symptom-limited ramp bicycle exercise protocol. Regression analysis was performed to identify predictors of peak oxygen uptake (V'O(2)), The index group had lower peak V'O(2) (1.4 [median 0.8; range 2.5] l/min) than controls (1.9 [0.7; 3.1]; p < 0.05). Subjects without ventriculocoronary arterial communications (VCAC), corrected to biventricular circulation, had higher peak V'O(2), than the remaining index subjects. Decreased total lung capacity, low minute ventilation, and high physiologic dead space measured at peak exercise were all independent determinants of low peak V'O(2) Exercise capacity is generally decreased in subjects with pulmonary atresia and intact ventricular septum, although there are marked interindividual differences. Good exercise capacity was found in subjects without VCAC who had undergone biventricular repair. Decreased lung function was an unfavourable predictor of exercise capacity.
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- Ekman-Joelsson, Britt-Marie, 1956, et al.
(författare)
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Immunological differences between heart- and kidney-transplanted children: a cross-sectional study.
- 2023
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Ingår i: Cardiology in the young. - 1047-9511 .- 1467-1107. ; 33:5, s. 787-792
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Tidskriftsartikel (refereegranskat)abstract
- Post-transplantation lymphoproliferative is a potentially mortal complication after heart transplantation in children. As the immune system plays a crucial role in the development of lymphoma, we explored the influence of thymus function in relation to immunosuppressive treatment in organ-transplanted children and healthy control subjects. A prospective case-control study was performed at a single centre, in which 36 children who had undergone heart transplantation were compared to two control groups: 34 kidney-transplanted children and 33 healthy age- and sex-matched children. T- and B-lymphocyte subtypes and monocytes were analysed by flow cytometry, and T-cell receptor excision circles were assessed using quantitative polymerase chain reaction. Heart-transplanted children had a lymphocyte profile characterised by reduced or absent thymic function with low numbers of T-cell receptor excision circles and total and naïve T cells, together with immune activation against the allograft. Despite similar immunosuppressive treatment, the kidney-transplanted group showed an activated T-lymphocyte compartment.
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