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  • 1.
    Berghammer, Malin
    et al.
    University West, Department of Health Sciences, Section for nursing - graduate level. Sahlgrenska Academy, Institute of Medicine.
    Brink, Eva
    University West, Department of Nursing, Health and Culture, Division of Advanced Nursing.
    Rydberg, Annika M.
    University of Umeå, Department of Clinical Sciences, Pediatrics.
    Dellborg, Mikael
    Sahlgrenska Academy, Institute of Medicine.
    Ekman, Inger
    University of Gothenburg, Centre for Person-Centred Care.
    Committed to Life: Adolescents’ and Young Adults’ Experiences of Living with Fontan Circulation2015In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 10, no 5, p. 403-412Article in journal (Refereed)
    Abstract [en]

    Background Single ventricle defects are among the most complex congenital heart defects and the development of advanced surgical procedures in recent decades has created the first generation of adolescents and young adults living with this condition. Yet little is known about how these individuals experience life and what impact the heart defect has on their life in general. Objective The aim was to illuminate and gain a deeper understanding of adolescents’ and young adults’ experiences of living with a surgically palliated univentricular heart. Design Seven open-ended in-depth interviews were conducted, transcribed, and analyzed according to the henomenological hermeneutical method. All adolescents and young adults operated before 1995 according to the Fontan procedure or the total cavo-pulmonary connection procedure at one pediatric cardiology unit were included in the study. They were 17–32 years of age (median age 22 years). Results The interpretation of the interview transcripts showed that the participants experienced living with a surgically palliated univentricular heart in terms of feeling exceptional, strong, and healthy. This was supported by two structural analyses, where three themes emerged: happiness over being me, focusing on possibilities, and being committed to life. Conclusion Living with a Fontan circulation included negative experiences but the analyses clearly demonstrated a feeling of being strong and healthy. An appreciation of having survived and being committed to life was found to be an integral part of the development of the interviewees’ existential growth. This probably strengthens them further in their ability to balance expectations and hurdles in life. This study provides valuable insights into the experience of patients after the Fontan procedure and the importance of a positive health care environment throughout their lives.

  • 2.
    Holbein, Christina E.
    et al.
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Fogleman, Nicholas D.
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Hommel, Kevin
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Apers, Silke
    KU Leuven, Leuven, Belgium.
    Rassart, Jessica
    KU Leuven, Leuven, Belgium.
    Moons, Philip
    KU Leuven, Leuven, Belgium & University of Gothenburg, Gothenburg, Sweden..
    Luyckx, Koen
    KU Leuven, Leuven, Belgium.
    Sluman, Maayke A.
    Amsterdam Medical Center, Amsterdam, The Netherlands.
    Enomoto, Junko
    Chiba Cardiovascular Center, Chiba, Japan.
    Johansson, Bengt
    Umeå University, Umeå, Sweden.
    Yang, Hsiao-Ling
    National Taiwan University, Taipei, Taiwan.
    Dellborg, Mikael
    University of Gothenburg, Gothenburg, Sweden.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India..
    Jackson, Jamie L.
    Nationwide Children's Hospital, Columbus, Ohio, USA.
    Budts, Werner
    University Hospitals Leuven and Department of Cardiovascular Sciences, Leuven, Belgium..
    Kovacs, Adrienne H.
    Oregon Health & Science University, Portland, Oregon, USA.
    Morrison, Stacey
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Tomlin, Martha
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Gosney, Kathy
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France.
    Eriksen, Katrine
    Oslo University Hospital, Oslo, Norway.
    Thomet, Corina
    KU Leuven, Leuven, Belgium.
    Berghammer, Malin
    University West, Department of Health Sciences, Section for nursing - graduate level. University of Gothenburg, Gothenburg, Sweden.
    Alday, Luis
    Hospital de Niños, Córdoba, Argentina.
    Callus, Edward
    IRCCS Policlinico San Donato Hospital, Milan, Italy.
    Fernandes, Susan M
    Stanford University, Palo Alto, California, USA.
    Caruana, Maryanne
    Mater Dei Hospital, Msida, Malta.
    Menahem, Samuel
    Monash Medical Center, Melbourne, Australia.
    Cook, Stephen C.
    Helen DeVos Children's Hospital, Grand Rapids, Michigan, USA.
    Rempel, Gwen R.
    University of Alberta, Edmonton, Canada.
    White, Kamila
    Washington University and Barnes Jewish Heart & Vascular Center, University of Missouri, Saint Louis, Missouri, USA.
    Khairy, Paul
    Montreal Heart Institute, Montreal, Canada.
    Kutty, Shelby
    Children's Hospital & Medical Center, Omaha, Nebraska, USA.
    Veldtman, Gruschen
    Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
    A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation2018In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803, Vol. 13, no 3, p. 392-400Article in journal (Refereed)
    Abstract [en]

    Objective First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. Design Cross-sectional observational study. Setting Twenty-four cardiology centers from 15 countries across five continents. Patients Four hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years. Outcome Measures QOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively. Results Patients with a Fontan circulation reported lower QOL (Wald Z = −3.59, p = <.001) and more negative perceptions of their CHD (Wald Z = −7.66, p < .001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβ = 0.15, p = .002, 95% CI = 0.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions. Conclusions The Fontan sample’s more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.

  • 3.
    Sluman, Maayke A.
    et al.
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands; Department of Cardiology, Jeroen Bosch Hospital, ‘s Hertogenbosch, The Netherlands.
    Apers, Silke
    University of Leuven, Department of Development and Regeneration, KU Leuven, Leuven, Belgium; University of Leuven, Leuven, Department of Public Health and Primary Care, KU Leuven, Belgium.
    Sluiter, Judith K.
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands.
    Nieuwenhuijsen, Karen
    University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam UMC, Amsterdam, The Netherlands.
    Moons, Philip
    University of Leuven, Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium; University of Gothenburg, Center for Person‐Centered Care (GPCC), Gothenburg, Sweden .
    Luyckx, Koen
    University of Leuven, School Psychology and Development in Context, KU Leuven, Leuven, Belgium ; University of the Free State, Department of Psychology, UNIBS, Bloemfontein, South Africa.
    Kovacs, Adrienne H.
    University Health Network, Department of Psychology, Toronto, Canada; Oregon Health & Science University, The Knight Cardiovascular Institute, Portland, Oregon .
    Thomet, Corina
    University of Bern, Center for Congenital Heart Disease, Inselspital, Bern University Hospital, Bern, Switzerland.
    Budts, Werner
    Congenital and Structural Cardiology, Department of Cardiovascular Sciences, University Hospitals of Leuven, KU Leuven, Leuven, Belgium.
    Enomoto, Junko
    Department of Adult Congenital Heart Disease, Chiba Cardiovascular Center, Chiba, Japan.
    Yang, Hsiao-Ling
    National Taiwan University, School of Nursing, College of Medicine, Taipei, Taiwan.
    Jackson, Jamie L.
    Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, Ohio.
    Khairy, Paul
    University of Montreal, Montreal Heart Institute, Montreal, Canada.
    Cook, Stephen C.
    Adult Congenital Heart Disease Center, Helen DeVos Children's Hospital, Grand Rapids, Michigan.
    Subramanyan, Raghavan
    Frontier Lifeline Hospital, Dr. K. M. Cherian Heart Foundation, Chennai, India.
    Alday, Luis
    Division of Cardiology, Hospital de Niños, Córdoba, Argentina.
    Eriksen, Katrine
    9Department of Cardiology, Oslo University Hospital, Oslo, Norway.
    Dellborg, Mikael
    Gothenburg University, Institute of Medicine, Sahlgrenska Academy, Gothenburg, Sweden; Adult Congenital Heart Unit, Sahlgrenska University Hospital/Östra, Gothenburg, Sweden.
    Berghammer, Malin
    University West, Department of Health Sciences, Section for nursing - graduate level. University of Gothenburg, Center for Person‐Centered Care (GPCC), Gothenburg, Sweden.
    Mattsson, Eva
    Department of Cardiology, Karolinska University Hospital, Stockholm, Sweden.
    Mackie, Andrew S.
    University of Alberta, Department of Pediatric Cardiology, Edmonton, Canada.
    Menahem, Samuel
    Monash Medical Center, Melbourne, Australia.
    Caruana, Maryanne
    Department of Cardiology, Mater Dei Hospital, Msida, Malta.
    Gosney, Kathy
    Adult Congenital Heart Disease Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
    Soufi, Alexandra
    Hospital Louis Pradel, Lyon, France.
    Fernandes, Susan M.
    Adult Congenital Heart Disease Program at Stanford, Lucile Packard Children’s Hospital and Stanford Health Care, Palo Alto, California.
    White, Kamila S.
    Washington University, Adult Congenital Heart Disease Center, ; University of Missouri, Barnes Jewish Heart & Vascular Center, Saint Louis, Missour.
    Callus, Edward
    Clinical Psychology Service, IRCCS Policlinico San Donato Hospital, Milan, Italy.
    Kutty, Shelby
    Adult Congenital Heart Disease Center, University of Nebraska Medical Center/Children’s Hospital & Medical Center, Omaha, Nebraska.
    Bouma, Berto J.
    University of Amsterdam, Amsterdam UMC, Department of Cardiology, Amsterdam, The Netherlands.
    Mulder, Barbara J.M.
    University of Amsterdam, Amsterdam UMC, Department of Cardiology, Amsterdam, The Netherlands.
    Education as important predictor for successful employment in adults with congenital heart disease worldwide2019In: Congenital Heart Disease, ISSN 1747-079X, E-ISSN 1747-0803Article in journal (Refereed)
    Abstract [en]

    Background

    Conflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort.

    Methods

    Data from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross-sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models.

    Results

    Median age was 32 years (IQR 25-42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99-3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67-0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31-2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62).

    Conclusions

    There are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.

1 - 3 of 3
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