Quality of Life and Social Life Situation in Islet Transplanted Patients: Time for a Change in Outcome Measures?

Background: One of the overall goals in health care is to prolong life, increase patients’ wellbeing and quality of life. Many of patients with severe insulin-dependent diabetes mellitus experience fear of hypoglycemia (FoH), which forces them to change their lives both physically and socially to avoid episodes of hypoglycemia. Objective: To investigate the quality of life and the social life situation, with special focus on the consequences of FoH in islet transplanted patients. Methods: 11 patients (4 women and 7 men) were included; they have undergone islet transplantation at Uppsala University Hospital during the period 2001–2009. Short Form 36 (SF-36) and the Swedish version Hypoglycemia Fear Survey (Swe-HFS) were used to investigate quality of life, in relation to FoH. In addition, telephone interviews were conducted to investigate the patients social life situation in relation to FoH, after islet transplantation and were analyzed using a content analysis method. Results: The mean value for quality of life was lower than that in the normal population. 3 out of 10 patients experienced FoH; one patient declined to answer the questionnaire. 3 predominant themes were revealed; one theme associated with pre-transplant, was “struggle for control of social life situation” and two themes associated with post-transplant, were “regain power and control of social life situation” and “at peace with the balance between the present and the future.” Conclusion: The patients experienced improved control over social life situation while quality of life in relation to FoH may have improved following islet transplantation.