Long-term follow-up study of uncertainty and psychosocial adjustment among implantable cardioverter defibrillator recipients

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Background Sudden cardiac death is an international health issue. Implantable defibrillators have been effective in the secondary prevention of sudden cardiac death and are increasingly being utilized for primary prevention in individuals without a prior history of cardiac arrest or sustained ventricular tachycardia. Although it has been well documented that some recipients experience psychological distress and have difficulty in adjusting to the device, long-term data on psychological outcomes are limited. Objectives The aims of this study were to determine: (a) if there is a long-term relationship between uncertainty and psychosocial adjustment among implantable cardioverter defibrillator (ICD) recipients; and (b) if changes in uncertainty and/or adjustment occur over time. Design A longitudinal, descriptive, correlational design was used for this long-term follow-up study ( M = 9.4 years, SD = .23). Setting and participants Ninety-four patients from 4 major teaching hospitals in New England who had participated in an investigation of uncertainty and adjustment at 1 and 8 weeks following an initial ICD implant between 1996 and 1997 were solicited. From the original sample, 41 patients had expired (44%) and 5 had heart transplants (5%). Two individuals chose not to participate. Twenty-five persons (27%) were not found despite numerous attempts to locate them. The final sample included 21 subjects (22%). Methods Following university institutional review board approval, a mail survey was administered using the Dillman method. Instruments included a demographic data questionnaire, the Psychosocial Adjustment to Illness Scale-Self-Report and the 2-factor version of the Mishel Uncertainty in Illness Scale. Results The final sample primarily included educated, married, white males. Uncertainty and adjustment levels did not change significantly over time. Early adjustment explained 40% of the variance in overall adjustment at long-term follow-up ( P = .010). Men experienced significantly more uncertainty overall [ t(19) = 2.925, P = .009] and complexity related to living with the device [ t(19) = 3.62, P = .002]. Conclusions Patients should be screened for psychological distress prior to device implantation so early intervention can be provided. Qualitative research is recommended to determine whether gender specific needs related to living with an ICD exist. More quantitative, long-term longitudinal data are also needed.