Familial amyloidotic patients' experience of the disease and of liver transplantation

Journal of Advanced Nursing

Volumn 27, Issue 1, 1998, Pages 52-58

  Jonsèn, Elisabeth ^a   Athlin, Elsy ^b   Suhr, Ole ^a  

^a UMEÅ UNIVERSITY HOSPITAL   (Sweden)

^b Umed University Hospital ^*

Author keywords

Amyloidosis hereditary; Nursing; Phenomenology; Quality of life; Transplantation liver

Indexed keywords

ADULT; AMYLOID NEUROPATHY; ARTICLE; FEMALE; GENETICS; HUMAN; LIVER TRANSPLANTATION; MALE; MIDDLE AGED; PATIENT PARTICIPATION; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE;

ADULT; AMYLOID NEUROPATHIES; FEMALE; HUMANS; LIVER TRANSPLANTATION; MALE; MIDDLE AGED; PATIENT PARTICIPATION; QUALITY OF LIFE;

EID: 0031606157     PISSN: 03092402     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1365-2648.1998.00503.x     Document Type: Article

References (29)

1. Andersson R. (1976) Familial amyloidosis with polyneuropathy: a clinical study based on patients living in northern Sweden. Acta Medica Scandinavica 198 (Suppl. 590), 1-64.
2. Bergfeldt B.L., Olofsson B.O. & Edhag K.O. (1985) Electrophysiologic evaluation of the cardiac conduction system and its autonomic regulation in familial amyloid polyneuropathy. American Journal of Cardiology 56, 647-652.
3. Berterö C. & Ek A.-C. (1993) Quality of life of adults with acute leukaemia. Journal of Advanced Nursing 18, 1346-1353.
4. Bjerle P., Ek B., Linderholm H. & Steen L. (1993) Oesophageal dysfunction in familial amyloidosis with polyneuropathy. Clinical Physiology 13, 57-69.
5. Chenitz C.W. & Swanson J.M. (1986) From Practice to Grounded Theory. Addison-Wesley, Menlo Park, California.
6. Coyler H. (1996) Women's experience of living with cancer. Journal of Advanced Nursing 23, 496-501.
7. Coutinho P., Martins da Silva A., Kopes Lima J. & Resende Barbosa A. (1980) Forty years of experience with type I amyloid neuropathy. Review of 483 cases. In Amyloid and Amyloidosis (Coutinho P., Martins da Silva A., Kopes Lima J. & Resende Barbosa A. eds) Excerpta Medica, Amsterdam, pp. 88-98.
8. Eriksson P., Boman K., Jacobsson B. & Olofsson B.O. (1986) Cardiac arrhythmias in familial amyloid polyneuropathy during anaesthesia. Acta Anaesthesiologica Scandinavica 30, 317-320.
9. de Freitas A. (1986) The heart in Portuguese amyloidosis. Postgraduate Medical Journal 62, 601-605.
10. French H.P. (1979) Reassurance: a nursing skill? Journal of Advanced Nursing 4, 627-634.
11. Holmgren G., Steen L., Ekstedt J. et al. (1991) Biochemical effect of liver transplantation in two Swedish patients with familial amyloidotic polyneuropathy (FAP-met 30). Clinical Genetics 40, 242-246.
12. Holmgren G., Ericzon B.-G., Groth C.-G. et al. (1993) Clinical improvement and amyloid regression after liver transplantation in hereditary transthyretin amyloidosis. Lancet 341, 1113-1116.
13. Jonsén E., Suhr O., Athlin E. & Wikström L. (1996) Quality of life after liver transplantation in patients with familial amyloidotic polyneuropathi. Amyloid: The International Journal of Experimental and Clinical Investigation 3, 124-129.
14. Lewis W., Skinner M., Simms R., Jones L., Cohen A. & Jenkins R. (1994) Ortotopic liver transplantation for familial amyloidotic polyneuropathi. Clinical Transplantation 8, 107-110.
15. Morse J.M. & Johnson J.L. (1991) The Illness Experience - Dimensions of Suffering. Sage, Newbury Park, California.
16. Munhall P. (1994) Revisioning Phenomenology: Nursing and Health Science Research. National League For Nursing Press, New York.
17. Olofsson B.-O., Suhr O., Niklasson U. et al. (1994) Assessment of autonomic nerve function in familial amyloidotic polyneuropathy: a clinical study based on spectral analysis of heart rate variability. Amyloid: The International Journal of Experimental and Clinical Investigation 1, 138-142.
18. Patton Q.M. (1989) Qualitative Evaluation Methods. Sage, Newbury Park, California.
19. Pålsson M.-B. & Norberg A. (1995) Breast cancer patients' experiences of nursing with focus on emotional support: the implementation of nursing intervention. Journal of Advanced Nursing 21, 277-285.
20. Rando T. (1984) Grief, Dying, and Death. Clinical Interventions for Caregivers. Research Press Company, Champaign, Illinois.
21. Spigelberg H. (1976) The Phenomenological Movement. Martinus Nijhoff, The Hague.
22. Steen L. & Ek B. (1984) Familial amyloidosis with polyneuropathy. A long-term follow-up of 21 patients with special reference to gastrointestinal symptoms. Acta Medica Scandinavica 214, 387-397.
23. Steen L., Holmgren G., Suhr O. et al. (1994) World-wide survey of liver transplantation in patients with familial amyloidotic polyneuropathy. Amyloid: The International Journal of Experimental and Clinical Investigation 1, 138-142.
24. Suhr O., Danielsson Å. & Steen L. (1992) Bile acid malabsorption caused by gastrointestinal motility dysfunction? An investigation of patients with familial amyloidosis with polyneuropathy. Scandinavian Journal of Gastroentrology 27, 201-207.
25. Suhr O., Danielsson Å., Holmgren G. & Steen L. (1994) Malnutrition and gastrointestinal dysfunction as prognostic factors for survival in familial amyloidotic polyneuropathy. Journal of Internal Medicine 235, 479-485.
26. Sullivan M., Ahlmen M. & Bjelle A. (1990) Health status assessment in rheumatoid arthritis: 1. Further work on the validity of the Sickness Impact Profile. Journal of Rheumatology 17, 439-447.
27. Tawara S., Nakazato M., Kangawa K., Matsuo H. & Araki S. (1983) Identification of amyloid prealbumin variant in familial amyloidotic polyneuropathy (Japanese type). Biochimica et Biophysica Research Communication 116, 880-888.
28. Thompson D., Ersser S. & Webster R. (1995) The experiences of patients and their partners 1 month after heart attack. Journal of Advanced Nursing 22, 707-714.
29. Tschudin V. (1995) Counselling Skills for Nurses. Bailliére Tindall, London.