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Psychosocial functioning of adults with congenital heart disease: outcomes of a 30–43 year longitudinal follow-up

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Abstract

Objective

Investigating long-term psychosocial and emotional outcomes, 30–43 years after cardiothoracic surgery during childhood.

Methods

Adult patients (N = 252, aged 33–55 years) all operated between 1968 and 1980 for atrial septal defect, ventricular septal defect, pulmonary stenosis, tetralogy of Fallot or transposition of the great arteries (TGA, all Mustard) were evaluated in the Erasmus MC. Psychosocial and emotional functioning were measured using standardized, validated questionnaires. Results in 2011 were compared with those found in 2001.

Results

Compared with normative data, the total sample showed significant impairments on living conditions, relationships, occupational level and income, but a better quality of life and emotional functioning. Patients with moderate/complex ConHD reported significantly more physical restrictions and felt more often at a disadvantage because of their ConHD compared with those with simple ConHD. From 2001 to 2011, outcomes on biographical characteristics (living conditions, marital status and income) improved significantly, though still impairments were found.

Conclusion

At 30–43 year follow-up, compared to normative data, patients had a better quality of life and emotional functioning, despite impairments on occupational level and income. Compared to patients with simple defects, patients with moderate/complex ConHD scored worse on multiple outcomes, which warrants special attention for these patients.

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Acknowledgments

This work was supported by the “Stichting Coolsingel”, which is a non-profit organization that supports a wide scale of medical research [Grant Number: 125]. The authors gratefully thank the participating patients for their contribution to this study, and the staff of the outpatients’ clinic for adults with ConHD (Erasmus MC, Rotterdam, The Netherlands) for including and motivating the patients. Also, thanks are extended to Michael Cramer, for his valuable assistance in the preparation of this manuscript.

Conflict of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Author information

Authors and Affiliations

  1. Department of Cardiology, Erasmus Medical Center, Rotterdam, The Netherlands

    Petra Opić, Jolien W. Roos-Hesselink, Judith A. A. Cuypers, Maarten Witsenburg, Annemien van den Bosch & Ron T. van Domburg

  2. Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center-Sophia Children’s Hospital, P.O. Box 2060, 3000 CB, Rotterdam, The Netherlands

    Petra Opić & Elisabeth M. W. J. Utens

  3. Department of Cardiothoracic Surgery, Erasmus Medical Center, Rotterdam, The Netherlands

    Ad J. J. C. Bogers

Authors
  1. Petra Opić
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  2. Jolien W. Roos-Hesselink
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  7. Ad J. J. C. Bogers
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  8. Elisabeth M. W. J. Utens
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Corresponding author

Correspondence to Elisabeth M. W. J. Utens.

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Opić, P., Roos-Hesselink, J.W., Cuypers, J.A.A. et al. Psychosocial functioning of adults with congenital heart disease: outcomes of a 30–43 year longitudinal follow-up. Clin Res Cardiol 104, 388–400 (2015). https://doi.org/10.1007/s00392-014-0792-1

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  • DOI: https://doi.org/10.1007/s00392-014-0792-1

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