Nurse- and peer-led self-management programme for patients with an implantable cardioverter defibrillator; a feasibility study

Worldwide, chronic conditions in general and specifically cardiovascular disease (CVD), are a major health burden [1]. The prevalence of CVD is increasing because of changed life expectancies, unhealthy lifestyles, and improved treatment options [2, 3]. Because of these improved therapies, patients suffering from acute myocardial infarction have a considerably higher chance of survival. A substantial number of CVD patients receive an implantable cardioverter defibrillator (ICD), making it one of the most important recent advanced therapies in the prevention of sudden cardiac arrest due to life-threatening arrhythmias [4, 5].

Adjusting to the consequences of CVD and regaining control in daily life can often be difficult, particularly after ICD implantation. Introducing a foreign body into the heart may be considered a major life event; ICD patients may be confronted with a changed body image, problems of psychosocial adaptation, and reduced quality of life [6]. In addition, symptoms of anxiety and depression after implantation appear to be common among ICD patients, affecting 24–87% and 24–33%, respectively, while 13–38% suffer clinically significant anxiety disorders [7]. So, although implantation may relieve much of the fear of sudden death, it also introduces new fears, so that the overall effect on psychological health is largely neutral [8]. Patients have to cope with the presence of a potentially life-threatening condition (i.e. ventricular arrhythmias) and the experience of potentially aversive treatment (i.e. shocks). According to Sears and colleagues [7], patients may increasingly limit their range of activities and inadvertently diminish their quality of life due to fear of shocks. To deal with the perceived lack of control, the fundamental psychological challenge for ICD patients is to derive perceived security from the ICD device [7, 9]. Psychological interventions to enhance perceived control and acceptance of the device are therefore necessary [10]. A recent review showed that only a few studies assessed the effects of psychological interventions for ICD patients [11]. In the majority of these studies, no significant effects of these interventions were found, with exception of a cognitive behavioural therapy intervention [12]. In the majority of these studies, the lack of positive results may be explained partly by the small sample sizes and possibly also by the unstructured format of several of the interventions [11].

Structured self-management programmes have been developed by Lorig and colleagues since the early 1980s, including the widely disseminated 'Chronic Disease Self-Management Program' (CDSMP) [13‐18]. The CDSMP is a generic group-based self-management programme, which is based on the principal assumption that patients with various chronic diseases can learn from each other as they have similar self-management problems and disease-related tasks [14]. The CDSMP, which is generally led by trained lay leaders, has been proved effective in several randomised trials with 6 to 24 months of follow-up [13, 14, 19]. It has been shown to significantly improve exercise level and communication with physicians, and to result in positive changes in health status and a reduction of health care utilisation among heterogeneous groups of patients with chronic conditions (including heart disease, lung disease, stroke, and arthritis) [14, 15]. Although the CDSMP is originally developed for use in heterogeneous patient groups, we expect that the programme is also very well applicable in homogeneous patient groups such as ICD patients. The advantages of a homogeneous patient group may be that during the group process patients have better opportunities to share their disease specific problems, and are more likely to function as role models for each other. The CDSMP is based on Bandura's Social Cognitive Theory [20] and incorporates modelling, skills mastery, reinterpretation of symptoms, and social persuasion to enhance self-efficacy expectancies [13, 15]. In cardiac samples, self-efficacy has been associated positively with life style changes and adherence to exercise programs [21]. In addition, the Social Cognitive Theory framework has been shown to be suitable for application to ICD patients improving physical and psychological functioning [22]. As in ICD patients the success of the device implantation may depend, in part, on the recipient's ability to adjust psychologically to the device [23, 24], it is therefore important to assess the benefits of this self-management programme for ICD patients.

From this feasibility study we learned that Lorig's structured self-management programme is applicable in a homogeneous group of ICD patients. The CDSMP was feasible according to patients and leaders. The patients appraised the programme as relevant and gave an overall report mark of 8.4. Furthermore, eight of the ten patients attended at least four sessions of the programme and only minor deviations from the protocol were reported. However, the leaders experienced some role ambiguity. This may be due to the fact that the CDSMP protocol does not include specific instructions for dividing the activities between the two leaders. Adding specific instructions in the protocol is therefore recommended, in order to diminish this experienced role ambiguity. Furthermore, becoming more experienced with the programme in practice may probably decrease role ambiguity as well. Next to the applicability of the programme, the CDSMP seemed to positively influence general self-efficacy expectancies, symptoms of anxiety, physical functioning, social functioning, role limitations due to physical problems, and pain. Although obviously our small-scale approach does not allow us to come to final conclusions regarding the effectiveness of the programme, our findings seem promising.

The results of this study suggest that a group-based self-management programme led by a team consisting of a nurse specialist and a CVD patient is feasible for use among ICD patients. In summary, we may conclude that the intervention was generally performed according to protocol, that the patients' attendance and adherence were high, and that the opinion of both patients and leaders was positive. The experience of running the intervention can therefore be concerned as satisfactory. Furthermore, attending the CDSMP may positively influence general self-efficacy expectancies, symptoms of anxiety, physical functioning, social functioning, role limitations due to physical problems, and pain. As the small-scale approach of this study did not allow testing for statistical inferences, conclusions derived from this study should be taken with some caution. Therefore, we recommend assessing the effectiveness of the programme among a larger sample of ICD patients or other CVD patient groups in a randomised controlled trial.

This research project was funded by the Netherlands Heart Foundation (2002B005) and the University Hospital Maastricht (PF 179), the Netherlands. This study was conducted within the School for Public Health and Primary Care of Maastricht University in the Netherlands in cooperation with Lorig and colleagues from Stanford University. We thank N. Steverink, H.A. Elzen, and J.P. Slaets from the University Hospital Groningen in the Netherlands for their willingness to share Dutch intervention materials. We want to thank Y.J. Stevenhagen for providing medical history information of the participants from the ICD database of the University Hospital Maastricht.