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Journal of Genetic Counseling

, Volume 16, Issue 1, pp 105–117 | Cite as

Living with Multiple Endocrine Neoplasia Type 1: Decent Care-Insufficient Medical and Genetic Information A Qualitative Study of MEN 1 Patients in a Swedish Hospital

  • Nina StrømsvikEmail author
  • Karin Nordin
  • Gunilla Berglund
  • Lars F. Engebretsen
  • Mats G. Hansson
  • Eva Gjengedal
Original Research

This qualitative study explores how 29 Swedish patients with Multiple Endocrine Neoplasia type 1 (MEN1) experience living with the condition, appraisal of the clinical follow-up program, and surveys their future expectations. The aim of this study is to build knowledge about this patient group in order to provide optimal care. The participants describe physical, psychological, and social limitations in their daily activities and how these limitations influence quality of life. Our findings indicate that a majority of patients have adjusted to their situation, describing themselves as being healthy despite physical symptoms and treatment. The participants received decent care in the clinical follow-up program, - however, greater effort should be put into patient information. These patients might benefit from genetic counseling. Health professionals involved should recognize their potential impact and influence on a patient’s ability to adjust to these circumstances. Antonovsky`s Sense of Coherence theory is used to discuss these findings.

KEY WORDS:

MEN1 information empowerment genetic counseling quality of life sense of coherence. 

Notes

ACKNOWLEDGMENTS

We acknowledge the Norwegian Cancer Society, the Functional Genomics (FUGE) network and the University of Uppsala for financial support. Special thanks also to the two anonymous reviewers and the editor for their helpful comments.

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Copyright information

© National Society of Genetic Counselors, Inc. 2006

Authors and Affiliations

  • Nina Strømsvik
    • 1
    • 5
    Email author
  • Karin Nordin
    • 2
  • Gunilla Berglund
    • 2
  • Lars F. Engebretsen
    • 1
  • Mats G. Hansson
    • 3
  • Eva Gjengedal
    • 4
  1. 1.Haukeland University HospitalCenter of Medical Genetics and Molecular MedicineBergenNorway
  2. 2.Department of Public Health, and Caring SciencesFaculty of Medicine, Uppsala UniversityUppsala Science ParkSweden
  3. 3.Center for Bioethics at Karolinska Institute and Uppsala UniversityUppsalaSweden
  4. 4.Department of Public Health and Primary Health CareUniversity of BergenBergenNorway
  5. 5.Center of Medical Genetics and Molecular MedicineHaukeland University HospitalBergenNorway

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