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  • 1.
    Bay, Annika
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Lämås, Kristina
    Umeå University, Faculty of Medicine, Department of Nursing.
    Berghammer, Malin
    Sandberg, Camilla
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Johansson, Bengt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    It ́s like balancing on a slackline: A description from adults living with congenital heart disease2018In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 28, no Suppl. S1, p. S37-S37Article in journal (Refereed)
    Abstract [en]

    Introduction: Several studies have shown that adults with congenital heart disease have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of great importance to investigate how this population experiences physical activity. The aim of the study is to illuminate how adults with congenital heart disease describes themselves in relation to physical activity.

    Methods: Semi-structured interviews with fourteen adults with complex congenital heart disease were performed. Patients were recruited from the clinic waiting list, based on their scheduled follow up and diagnosis. Interviews were analysed by qualitative content analysis.

    Results: The overall theme It´s like balancing on a slackline illustrates how adults with congenital heart disease described themselves in relation to physical activity. The overall theme consists of four themes: Being an adventurer- enjoying the challenges of physical activity, Being a realist- adapting to physical ability, Beinga non-doer- lacking prerequisites for physical activity and Being an outsider- feeling excluded depending on physical ability.

    Conclusions: The descriptions on themselves as a physically active were not constant or one-dimensional and the descriptions varied during the interviews, related to different time periods in life. It meant that they could described themselves as being an adventurer liking tough challenges, but at the same time describing themselves as being a non-doer with uncertainty over their physical strength. The findings point out specific factors for adults with CHD that might constitute as obstacles, but also possibilities for being physically active.

  • 2. Berghammer, Malin C.
    et al.
    Mattsson, Eva
    Johansson, Bengt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Cardiology.
    Moons, Philip
    Dellborg, Mikael
    Comparison of participants and non-participants in patient-reported outcome surveys: the case of Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study2017In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, no 3, p. 427-434Article in journal (Refereed)
    Abstract [en]

    Background: The last decade has seen a vast increase in the use of patient-reported outcomes. As patientreported outcomes are used in order to capture patients' perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study), regarding demographic, clinical, and health status characteristics. Methods: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and nonparticipants were compared in terms of statistical significance and effect sizes. Results: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. Conclusions: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden.

  • 3.
    Berghammer, Malin
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level. The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden.
    Mattsson, Eva
    Karolinska University Hospital, Department of Cardiology, Stockholm, Sweden.
    Johansson, Bengt
    Umeå University, Department of Public Health and Clinical Medicine, Umeå, Sweden.
    Moons, Philip
    University of Gothenburg, Centre for Person-Centred Care (GPCC), Gothenburg, Sweden.
    Dellborg, M.
    The Sahlgrenska Academy at University of Gothenburg, Institute of Medicine, Gothenburg, Sweden.
    Comparison of participants and non-participants in patient-reported outcome surveys: the case of Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study2017In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, no 3, p. 427-434Article in journal (Refereed)
    Abstract [en]

    Background: The last decade has seen a vast increase in the use of patient-reported outcomes. As patient-reported outcomes are used in order to capture patients’ perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease – International Study), regarding demographic, clinical, and health status characteristics. Methods: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and non-participants were compared in terms of statistical significance and effect sizes. Results: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. Conclusions: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden. © Cambridge University Press 2016

  • 4.
    Birkeland, Anna-Lena
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Dahlgren, Lars
    Umeå University, Faculty of Social Sciences, Department of Sociology.
    Hägglöf, Bruno
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Child and Adolescent Psychiatry.
    Rydberg, Annika
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Breaking bad news: an interview study of paediatric cardiologists2011In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 21, no 3, p. 286-291Article in journal (Refereed)
    Abstract [en]

    Technical developments in paediatric cardiology over the last few decades have increased expectations on professionals, demanding of them more emotional competence and communicative ability. The aim of this study was to examine the approach of paediatric cardiologists in informing and communicating with the family of the patient.

    Method: A qualitative interview method was first tested in a pilot study with two paediatric cardiologists. There were nine subsequent semi-structured interviews that were carried out with paediatric cardiologists. A researcher performed all the interviews, which were taped, transcribed, decoded, and analysed.

    Results: Among paediatric cardiologists, how to break bad news to the family is an important concern, evident in findings regarding the significance of trust and confidence, the use of different emotional positions, and a common ambition to achieve skills to handle the situation. There is a need for reflection, education, and sharing of experiences. The cardiologists desire further development of teamwork and of skills in medical students and residents for delivering bad news.

    Conclusions: Doctors are expected to cope with the complexities of diagnoses and decisions, while simultaneously being sensitive to the feelings of the parents, aware of their own emotions, and able to keep it all under control in the context of breaking the bad news to the parents and keeping them informed. These conflicting demands create a need to expand the professional role of the doctor by including more training in emotional competence and communicative ability, beginning in medical school and continuing through consultancy.

  • 5.
    Bratt, Ewa-Lena
    et al.
    University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy.
    Sparud-Lundin, Carina
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy.
    Östman-Smith, Ingegerd
    University of Gothenburg, Department of Paediatrics, Institute of Clinical Sciences, Sahlgrenska Academy.
    Axelsson, Åsa B
    University of Gothenburg, Institute of Health and Care Sciences, Sahlgrenska Academy.
    The experience of being diagnosed with hypertrophic cardiomyopathy through family screening in childhood and adolescence.2012In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 22, no 5, p. 528-535Article in journal (Refereed)
    Abstract [en]

    Aim To describe the experiences of children and adolescents being screened positive for hypertrophic cardiomyopathy and how this impacts their daily life. BACKGROUND: Hypertrophic cardiomyopathy is a hereditary disease and the most common medical cause of sudden death in childhood and adolescence. This is the reason for recommending screening in children with an affected first-degree relative. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the daily life of the affected individual. DESIGN: This is a descriptive qualitative interview study. METHODS: We interviewed 13 asymptomatic children or adolescents diagnosed with hypertrophic cardiomyopathy through family screening 12-24 months after the diagnosis. Analysis was conducted with qualitative content analysis. RESULTS: Children described an involuntary change, which affected their daily life with limitations and restrictions in life, both in the individual and social context. Lifestyle recommendations had the most severe impact on daily life and affected their social context. They tried to navigate in a world with new references, and after reorientation they felt hope and had faith in the future. CONCLUSIONS: Children diagnosed with hypertrophic cardiomyopathy through family screening went through an involuntary change resulting in limitations and restrictions in life. This study indicates that there is a need for support and that healthcare professionals have to consider the specific needs in these families. Our findings thus give guidance in how best to improve support to the patients and their family. Diagnosis in asymptomatic children should be accompanied by ideally multi-professional follow-up, focusing not only on medical issues.

  • 6.
    Bratt, Ewa-Lena
    et al.
    University of Gothenburg,, Department of Paediatrics, Institute of Clinical Sciences, The Sahlgrenska Academy.
    Östman-Smith, Ingegerd
    University of Gothenburg,, Department of Paediatrics, I.
    Sparud-Lundin, Carina
    University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy.
    Axelsson, Åsa B
    University of Gothenburg, Institute of Health and Care Sciences, The Sahlgrenska Academy.
    Parents' experiences of having an asymptomatic child diagnosed with hypertrophic cardiomyopathy through family screening2011In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 21, no 1, p. 8-14Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Hypertrophic cardiomyopathy is hereditary and the commonest medical cause of sudden death in childhood and adolescence, which is the reason for recommending screening in children with an affected parent. A diagnosis of hypertrophic cardiomyopathy implies lifestyle modifications, restrictions that may bring profound changes to the affected individual and impacts on the whole family.

    OBJECTIVE: To describe parents' experiences of how the diagnosis of hypertrophic cardiomyopathy in their child affects daily life.

    METHOD: Twelve parents with asymptomatic children diagnosed with hypertrophic cardiomyopathy through family screening were interviewed 12-24 months after the diagnosis. Analysis was conducted with qualitative content analysis.

    RESULTS: Parents described the immediate reaction of shock, grief, and injustice but were also grateful that the child was still asymptomatic. The diagnosis caused a significant change in lifestyle for most families due mainly to restrictions of sports activities. Parents had to adapt to the new life and develop strategies to protect their child. Death became a reality causing feelings of vulnerability. Regular medical check-ups and access to the liaison nurse were described as important factors of reassurance.

    CONCLUSIONS: Parents experienced early diagnosis as positive in a long-term perspective. The main changes perceived were ascribed to lifestyle modifications. Parents with athletic children experienced the lifestyle modifications as more severe. They strived to create a new life where they could feel secure and have faith in the future, and emphasised the need of regular follow-up and support from health care professionals as "mental pain relief", which helped them achieve a new state of normality.

  • 7.
    Eslami, Bahareh
    et al.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences. Department of Research, Tehran Heart Center, Tehran University of Medical Sciences, Tehran, Iran .
    Sundin, Örjan
    Mid Sweden University, Faculty of Human Sciences, Department of Psychology.
    Macassa, Gloria
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences. Department of Occupational and Public Health Sciences, University of Gävle, Gävle, Sweden .
    Khankeh, Hamid Reza
    Department of Nursing, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
    Soares, Joaquim J. F.
    Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences. Division of Social Medicine, Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden .
    Gender differences in health conditions and socio-economic status of adults with congenital heart disease in a developing country2013In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 23, no 02, p. 209-218Article in journal (Refereed)
    Abstract [en]

    Background Providing appropriate care for adults with congenital heart disease requires the evaluation of their current situation. There is limited research in Iran about these patients, particularly in relation to gender differences in the demographic/socio-economic and lifestyle factors, as well as disease parameters.

    Materials and methods The sample consisted of 347 congenital heart disease patients in the age group of 18–64 years, including 181 women, assessed by an analytical cross-sectional study. The patients were recruited from the two major heart hospitals in Tehran. Data were collected using questionnaires.

    Results The mean age of the patients was 33.24 years. Women were more often married and more often had offspring than men (p < 0.001). Educational level and annual income were similar between women and men. Unemployment was higher among women (p < 0.001), but financial strain was higher among men (p < 0.001). Smoking, alcohol, and water-pipe use was higher among men than among women (p < 0.001). Cardiac factors, for example number of cardiac defects, were similar among women and men, except that there were more hospitalisations owing to cardiac problems, for example arrhythmia, among men. Disease was diagnosed mostly at the hospital (57.4%). Most medical care was provided by cardiologists (65.1%). Only 50.1% of patients had knowledge about their type of cardiac defect.

    Conclusion Gender differences exist in the socio-economic and lifestyle characteristics of adults with congenital heart disease, in some cases related to the disease severity. Our findings also point to the need for interventions to increase patients’ knowledge about, and use of, healthier lifestyle behaviours, irrespective of gender. Furthermore, providing appropriate jobs, vocational training, and career counselling may help patients to be more productive.

  • 8.
    Eslami, Bahareh
    et al.
    Mid Sweden University, Sundsvall, Sweden.
    Örjan, Sundin
    Mid Sweden University, Sundsvall, Sweden.
    Macassa, Gloria
    University of Gävle, Faculty of Health and Occupational Studies, Department of Occupational and Public Health Sciences, Public health science. Mid Sweden University, Sundsvall, Sweden.
    Khankeh, Hamid Reza
    Department of Nursing, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
    Soares, Joaquim J. F.
    Mid Sweden University, Sundsvall, Sweden.
    Gender differences in health conditions and socio-economic status of adults with congenital heart disease in a developing country2013In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 23, no 2, p. 209-218Article in journal (Refereed)
    Abstract [en]

    Background Providing appropriate care for adults with congenital heart disease requires the evaluation of their current situation. There is limited research in Iran about these patients, particularly in relation to gender differences in the demographic/socio-economic and lifestyle factors, as well as disease parameters.

    Materials and methods The sample consisted of 347 congenital heart disease patients in the age group of 18–64 years, including 181 women, assessed by an analytical cross-sectional study. The patients were recruited from the two major heart hospitals in Tehran. Data were collected using questionnaires.

    Results The mean age of the patients was 33.24 years. Women were more often married and more often had offspring than men (p < 0.001). Educational level and annual income were similar between women and men. Unemployment was higher among women (p < 0.001), but financial strain was higher among men (p < 0.001). Smoking, alcohol, and water-pipe use was higher among men than among women (p < 0.001). Cardiac factors, for example number of cardiac defects, were similar among women and men, except that there were more hospitalisations owing to cardiac problems, for example arrhythmia, among men. Disease was diagnosed mostly at the hospital (57.4%). Most medical care was provided by cardiologists (65.1%). Only 50.1% of patients had knowledge about their type of cardiac defect.

    Conclusion Gender differences exist in the socio-economic and lifestyle characteristics of adults with congenital heart disease, in some cases related to the disease severity. Our findings also point to the need for interventions to increase patients’ knowledge about, and use of, healthier lifestyle behaviours, irrespective of gender. Furthermore, providing appropriate jobs, vocational training, and career counselling may help patients to be more productive.

  • 9.
    Frid, Christina
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Björkhem, Gudrun
    Jonzon, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Sunnegårdh, Jan
    Annerén, Göran
    Lundell, Bo
    Long-term survival in children with atrioventricular septal defect and common atrioventricular valvar orifice in Sweden2004In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 14, no 1, p. 24-31Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    The survival for patients with atrioventricular septal defect has improved markedly over the last decades and, during the same period, the survival of children with Down's syndrome has also increased. The aim of our study was to investigate long-term survival in patients having atrioventricular septal defect with common valvar orifice, but without associated significant congenital heart defects, in the setting of Down's syndrome, comparing the findings to those in chromosomally normal children with the same malformation.

    METHODS AND RESULTS:

    In a population-based retrospective study, we scrutinised the medical records from 801 liveborn children with atrioventricular septal defect born in Sweden during the period 1973 through 1997. Data on gender, presence or absence of Down's syndrome, associated congenital heart defects, date of birth, operation and death were recorded and followed up until 2001. An isolated atrioventricular septal defect with common atrioventricular valvar orifice was present in 502 children, of whom 86% had Down's syndrome. We found a significant reduc tion over time in age at operation, and in postoperative mortality at 30 days, from 28 to 1%. Using a multiple logistic regression model, we found no significant differences in mortality between genders, nor between those with or without Down's syndrome. Early corrective surgery could not be identified as a significant independent factor for survival. The 5-year postoperative survival in patients with Down's syndrome increased from 65% over the period from 1973 through 1977, to about 90% in the period 1993 through 1997, and the same trend was observed in chromosomally normal patients.

    CONCLUSIONS:

    Survival in uncomplicated atrioventricular septal defect with common atrioventricular valvar orifice has greatly increased, and surgical correction is now equally successful in patients with Down's syndrome and chromosomally normal patients, and for both genders. Death in connection with surgery is no longer the major threat, and focus must now be on long-term follow-up.

  • 10.
    Johansson, Bengt
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Babu-Narayan, Sonya V
    Kilner, Philip J
    Cannell, Timothy M
    Mohiaddin, Raad H
    3-dimensional time-resolved contrast-enhanced magnetic resonance angiography for evaluation late after the mustard operation for transposition2010In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 20, no 1, p. 1-7Article in journal (Refereed)
    Abstract [en]

    3-dimensional dynamic angiography is a useful method for detecting anatomically moderate-to-severe, but not mild, obstructions in the systemic venous channels following Mustard repair for transposition. This technique can be used as a single imaging method and/or as complimentary to standard two dimensional cardiovascular magnetic resonance techniques for detection of clinically important obstructions in the systemic venous channels.

  • 11.
    Rinnstrom, Daniel
    et al.
    Umeå University, Sweden.
    Dellborg, Mikael
    University of Gothenburg, Sweden.
    Thilen, Ulf
    Lund University, Sweden.
    Sorensson, Peder
    Karolinska Institute, Sweden.
    Nielsen, Niels Erik
    Linköping University, Department of Medical and Health Sciences, Division of Cardiovascular Medicine. Linköping University, Faculty of Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping.
    Christersson, Christina
    Uppsala University, Sweden.
    Ugander, Martin
    Karolinska University Hospital, Sweden.
    Johansson, Bengt
    Umeå University, Sweden.
    Poor blood pressure control in adults with repaired coarctation of the aorta and hypertension: a register-based study of associated factors2017In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, no 9, p. 1708-1715Article in journal (Refereed)
    Abstract [en]

    Background: Arterial hypertension is common in adults with repaired coarctation of the aorta, and is associated with several severe complications. Aims: This study aimed to investigate the prevalence of poorly controlled (amp;gt;= 140/90 mmHg) blood pressure among patients with diagnosed hypertension and to identify associated factors. Methods: In the national register for CHD, adults with repaired coarctation of the aorta and diagnosed hypertension - defined as a registry diagnosis and/or use of anti-hypertensive prescription medication - were identified. Logistic regression analysis was used to identify variables associated with poorly controlled blood pressure. Results: Of the 243 included patients, 27.2% were female, the mean age was 45.4 +/- 15.3 years, and 52.3% had poorly controlled blood pressure at the last registration. In a multivariable model, age (years) (OR 1.03, CI 1.01-1.06, p = 0.008) was independently associated with poorly controlled blood pressure and so was systolic arm-leg blood pressure gradient in the ranges [10, 20] mmHg (OR 4.92, CI 1.76-13.79, p = 0.002) to amp;gt;20 mmHg (OR 9.93, CI 2.99-33.02, p amp;lt; 0.001), in comparison with the reference interval [0, 10] mmHg. Patients with poorly controlled blood pressure had, on average, more types of anti-hypertensive medication classes prescribed (1.9 versus 1.5, p = 0.003). Conclusions: Poorly controlled blood pressure is common among patients with repaired coarctation of the aorta and diagnosed hypertension, despite what seems to be more intensive treatment. A systolic arm-leg blood pressure gradient is associated with poorly controlled blood pressure, even at low levels usually not considered for intervention, and may be an indicator of hypertension that is difficult to treat.

  • 12.
    Rinnström, Daniel
    et al.
    Umea Univ, Heart Ctr, Dept Publ Hlth & Clin Med, Moritzvagen 1B, S-90342 Umea, Vasterbotten, Sweden..
    Dellborg, Mikael
    Univ Gothenburg, Dept Mol & Clin Med, Gothenburg, Sweden..
    Thilen, Ulf
    Lund Univ, Dept Cardiol Clin Sci, Lund, Sweden..
    Sörensson, Peder
    Karolinska Inst, Dept Mol Med & Surg, Stockholm, Sweden..
    Nielsen, Niels-Erik
    Linkoping Univ, Dept Med & Hlth Sci, Linkoping, Sweden..
    Christersson, Christina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, UCR-Uppsala Clinical Research Center.
    Ugander, Martin
    Karolinska Univ Hosp, Karolinska Inst, Dept Clin Physiol, Stockholm, Sweden..
    Johansson, Bengt
    Umea Univ, Heart Ctr, Dept Publ Hlth & Clin Med, Moritzvagen 1B, S-90342 Umea, Vasterbotten, Sweden..
    Poor blood pressure control in adults with repaired coarctation of the aorta and hypertension: a register-based study of associated factors2017In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, no 9, p. 1708-1715Article in journal (Refereed)
    Abstract [en]

    Background: Arterial hypertension is common in adults with repaired coarctation of the aorta, and is associated with several severe complications. Aims: This study aimed to investigate the prevalence of poorly controlled (>= 140/90 mmHg) blood pressure among patients with diagnosed hypertension and to identify associated factors. Methods: In the national register for CHD, adults with repaired coarctation of the aorta and diagnosed hypertension - defined as a registry diagnosis and/or use of anti-hypertensive prescription medication - were identified. Logistic regression analysis was used to identify variables associated with poorly controlled blood pressure. Results: Of the 243 included patients, 27.2% were female, the mean age was 45.4 +/- 15.3 years, and 52.3% had poorly controlled blood pressure at the last registration. In a multivariable model, age (years) (OR 1.03, CI 1.01-1.06, p = 0.008) was independently associated with poorly controlled blood pressure and so was systolic arm-leg blood pressure gradient in the ranges [10, 20] mmHg (OR 4.92, CI 1.76-13.79, p = 0.002) to >20 mmHg (OR 9.93, CI 2.99-33.02, p < 0.001), in comparison with the reference interval [0, 10] mmHg. Patients with poorly controlled blood pressure had, on average, more types of anti-hypertensive medication classes prescribed (1.9 versus 1.5, p = 0.003). Conclusions: Poorly controlled blood pressure is common among patients with repaired coarctation of the aorta and diagnosed hypertension, despite what seems to be more intensive treatment. A systolic arm-leg blood pressure gradient is associated with poorly controlled blood pressure, even at low levels usually not considered for intervention, and may be an indicator of hypertension that is difficult to treat.

  • 13.
    Rinnström, Daniel
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Dellborg, Mikael
    Thilén, Ulf
    Sörensson, Peder
    Nielsen, Niels-Erik
    Christersson, Christina
    Ugander, Martin
    Johansson, Bengt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine.
    Poor blood pressure control in adults with repaired coarctation of the aorta and hypertension: a register-based study of associated factors2017In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 27, no 9, p. 1708-1715Article in journal (Other academic)
    Abstract [en]

    Arterial hypertension is common in adults with repaired coarctation of the aorta, and is associated with several severe complications.

    This study aimed to investigate the prevalence of poorly controlled (⩾140/90 mmHg) blood pressure among patients with diagnosed hypertension and to identify associated factors.

    In the national register for CHD, adults with repaired coarctation of the aorta and diagnosed hypertension – defined as a registry diagnosis and/or use of anti-hypertensive prescription medication – were identified. Logistic regression analysis was used to identify variables associated with poorly controlled blood pressure.

    Of the 243 included patients, 27.2% were female, the mean age was 45.4±15.3 years, and 52.3% had poorly controlled blood pressure at the last registration. In a multivariable model, age (years) (OR 1.03, CI 1.01–1.06, p=0.008) was independently associated with poorly controlled blood pressure and so was systolic arm–leg blood pressure gradient in the ranges [10, 20] mmHg (OR 4.92, CI 1.76–13.79, p=0.002) to >20 mmHg (OR 9.93, CI 2.99–33.02, p<0.001), in comparison with the reference interval [0, 10] mmHg. Patients with poorly controlled blood pressure had, on average, more types of anti-hypertensive medication classes prescribed (1.9 versus 1.5, p=0.003).

    Poorly controlled blood pressure is common among patients with repaired coarctation of the aorta and diagnosed hypertension, despite what seems to be more intensive treatment. A systolic arm–leg blood pressure gradient is associated with poorly controlled blood pressure, even at low levels usually not considered for intervention, and may be an indicator of hypertension that is difficult to treat.

  • 14.
    Rydberg, Annika
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Wiklund, Urban
    Department of Biomedical Engineering and Informatics, University Hospital, Umeå, Sweden.
    Rask, Peter
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Clinical Physiology.
    Hörnsten, Rolf
    Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences.
    Serial assessment of variability in heart rate in children with the Fontan circulation.2005In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 15, no 5, p. 498-503Article in journal (Refereed)
    Abstract [en]

    Autonomic nervous control of the heart can be studied by analysing variability in heart rate. Although earlier studies have shown reduced variability in patients with the Fontan circulation, we are not aware of any previous study examining longitudinal changes in such children. We have examined 13 patients who had undergone total cavopulmonary connection, and 37 healthy controls matched for age and gender. The examinations included complete echocardiography, and 24-hour ambulatory electrocardiogram for analysis of the parameters for variability in heart rate. After the Fontan procedure, three follow-up examinations were performed at a mean of 4.4 years, 5.6 and 7.2 years. Reduced variability was found in those with the Fontan circulation. A significant difference was found between patients and their controls with respect to high-frequency power at the second, p equal to 0.05, and third, p equal to 0.03, examination. The ratio of low-to-high-frequency components progressively increased in those with the Fontan circulation, a phenomenon that led to a significant difference, p equal to 0.03, at the third examination. Our study shows that, in patients with the Fontan circulation, routine ambulatory electrocardiographic monitoring including analysis of variability in heart rate, detects over time a progressive sympatovagal imbalance.

  • 15.
    Rönning, Helén
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science.
    Nielsen, Niels Erik
    Swahn, Eva
    Strömberg, Anna
    Educational needs in adults with congenitally malformed hearts2008In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 18, no 5, p. 473-479Article in journal (Refereed)
    Abstract [en]

    Background and aim: The number of adults with congenitally malformed hearts is growing, and there is an increasing demand for their continuous follow-up. At present, different programmes have been established for adults with congenital cardiac disease, but there is a lack of knowledge regarding how education and psychosocial support should be given to achieve effects. Before developing educational programmes, it is necessary to be aware of the perspective of the patients. The aim of our study, therefore, was to describe how adults with congenitally malformed hearts experience their educational needs.

    Methods: The study had a qualitative design. We interviewed 16 adults, aged from 19 to 55 years, with congenitally malformed hearts.

    Results: Two-way communication emerged as crucial to individualising education. Without good communication, those with congenitally malformed hearts, receiving information from providers of healthcare, are unable to transfer the information received. Thus, individualised education gives access to knowledge and the tools required to manage important areas in life, such as the congenital cardiac malformation, physical activity, the situation of life, treatment, and resources available for healthcare. The information given should provide easy access to knowledge through proper educational materials and methods, and be given with respect for the individual. This is facilitated if the education is tailored to the requirements of the individual in a holistic approach, and is provided through good communication.

    Conclusion: Our investigation shows that a structured educational programme needs to start from the perspective of the individual patient, and that two-way communication needs to be taken into consideration to enhance knowledge.

  • 16.
    Rönning, Helén
    et al.
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Centre for Medicine, Pain and Rehabilitation Centre.
    Nielsen, Niels Erik
    Linköping University, Department of Medical and Health Sciences, Cardiology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart Centre, Department of Cardiology.
    Swahn, Eva
    Linköping University, Department of Medical and Health Sciences, Cardiology. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart Centre, Department of Cardiology.
    Strömberg, Anna
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart Centre, Department of Cardiology.
    Educational needs in adults with congenitally malformed hearts2008In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 18, no 5, p. 473-479Article in journal (Refereed)
    Abstract [en]

    Background and aim: The number of adults with congenitally malformed hearts is growing, and there is an increasing demand for their continuous follow-up. At present, different programmes have been established for adults with congenital cardiac disease, but there is a lack of knowledge regarding how education and psychosocial support should be given to achieve effects. Before developing educational programmes, it is necessary to be aware of the perspective of the patients. The aim of our study, therefore, was to describe how adults with congenitally malformed hearts experience their educational needs.

    Methods: The study had a qualitative design. We interviewed 16 adults, aged from 19 to 55 years, with congenitally malformed hearts.

    Results: Two-way communication emerged as crucial to individualising education. Without good communication, those with congenitally malformed hearts, receiving information from providers of healthcare, are unable to transfer the information received. Thus, individualised education gives access to knowledge and the tools required to manage important areas in life, such as the congenital cardiac malformation, physical activity, the situation of life, treatment, and resources available for healthcare. The information given should provide easy access to knowledge through proper educational materials and methods, and be given with respect for the individual. This is facilitated if the education is tailored to the requirements of the individual in a holistic approach, and is provided through good communication.

    Conclusion: Our investigation shows that a structured educational programme needs to start from the perspective of the individual patient, and that two-way Communication needs to be taken into consideration to enhance knowledge.

  • 17.
    Tanghöj, Gustaf
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Liuba, Petru
    Sjöberg, Gunnar
    Rydberg, Annika
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Naumburg, Estelle
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Adverse events within 1 year after surgical and percutaneous closure of atrial septal defects in preterm children2019In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 29, no 5, p. 626-636Article in journal (Refereed)
    Abstract [en]

    Introduction: Atrial septal defect is the third most common CHD. A hemodynamically significant atrial septal defect causes volume overload of the right side of the heart. Preterm children may suffer from both pulmonary and cardiac comorbidities, including altered myocardial function. The aim of this study was to compare the rate of adverse events following atrial septal defect closure in preterm- and term-born children.

    Method: We performed a retrospective cohort study including children born in Sweden, who had a surgical or percutaneous atrial septal defect closure at the children’s hospitals in Lund and Stockholm, between 2000 and 2014, assessing time to the first event within 1 month or 1 year. We analysed differences in the number of and the time to events between the preterm and term cohort using the Kaplan–Meier survival curve, a generalised model applying zero-inflated Poisson distribution and Gary-Anderson’s method.

    Results: Overall, 413 children were included in the study. Of these, 93 (22.5%) were born prematurely. The total number of adverse events was 178 (110 minor and 68 major). There was no difference between the cohorts in the number of events, whether within 1 month or within a year, between major (p = 0.69) and minor (p = 0.84) events or frequencies of multiple events (p = 0.92).

    Conclusion: Despite earlier procedural age, larger atrial septal defects, and higher comorbidity than term children, preterm children appear to have comparable risk for complications during the first year after surgical or percutaneous closure.

  • 18. Tsang, Wendy
    et al.
    Johansson, Bengt
    Umeå University, Faculty of Medicine, Public Health and Clinical Medicine.
    Salehian, Omid
    Holm, Johan
    Webb, Gary
    Gatzoulis, Michael A
    Therrien, Judith
    Intracardiac thrombus in adults with the Fontan circulation.2007In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 17, no 6, p. 646-651Article in journal (Refereed)
  • 19.
    Winbo, Annika
    et al.
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Sandström, Olof
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Palmqvist, Richard
    Umeå University, Faculty of Medicine, Department of Medical Biosciences, Pathology.
    Rydberg, Annika
    Umeå University, Faculty of Medicine, Department of Clinical Sciences, Paediatrics.
    Iron-deficiency anaemia, gastric hyperplasia, and elevated gastrin levels due to potassium channel dysfunction in the Jervell and Lange-Nielsen Syndrome2013In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 23, no 3, p. 325-334Article in journal (Refereed)
    Abstract [en]

    Aim We investigated extra-cardiac clinical symptoms and signs in the rare Jervell and Lange-Nielsen Syndrome, characterised by impaired KCNQ1 function, a gene essential for gastric acid secretion. METHODS: All Swedish Jervell and Lange-Nielsen cases with double KCNQ1 mutations (14 cases) were investigated by medical record review, an interview, and were offered laboratory testing for iron-deficiency anaemia and gastrointestinal markers. RESULTS: A history of iron-deficiency anaemia in 12 of 14 patients and subjective gastrointestinal symptoms in 13 of 14 patients was revealed. Previous endoscopy in five cases had revealed no case of coeliac or inflammatory bowel disease but three cases of mucosal hyperplasia/dysplasia. Current signs of anaemia or iron substitution were present in 9 of 12 tested cases. Elevated levels of gastrin in seven of nine cases, pepsinogen in six of seven cases, and faecal calprotectin in nine of nine cases were present. A significant correlation between elevated gastrin levels and concurrent iron-deficiency and/or anaemia was revealed (p-value 0.039). CONCLUSIONS: A high frequency of extra-cardiac clinical symptoms and previous medical investigations was found. We propose that the Jervell and Lange-Nielsen Syndrome phenotypically includes gastrointestinal symptoms/signs and secondary iron-deficiency anaemia owing to hypochlorhydria on the basis of KCNQ1 mutations. The resultant elevated gastrin level is a potential risk factor for later gastrointestinal cancer. Clinical monitoring with regard to developing anaemia and hypergastrinaemia should be considered in the Jervell and Lange-Nielsen Syndrome.

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