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  • 1.
    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

  • 2.
    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.

  • 3.
    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.

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