Background: Approximately 30% of patients with ICDs experience clinically significant anxiety and depression, but psychological support is often limited. Our aims were to clarify common psychological concerns amongst this population and to use these findings to develop a support group, pitched in an appropriate way and with relevant content to best meet patients’ needs.
Methods: The project involved two stages: during the first stage of data collection and analysis, a consecutive cohort of patients attending an ICD clinic were invited to complete the Brief ICD Patient Concerns (ICDC) Questionnaire and a survey assessing demographics and ICD-related psychological needs. Quantitative data were examined with Excel and qualitative data were explored using thematic analysis. During the second stage of service development, findings from the questionnaires were used to pilot a closed support group, with 5 patients. Feedback from this group was used to develop the content and structure of a bi-monthly support group.
Findings: One-hundred-and-forty participants completed the questionnaires. Thirty-five percent scored above the ICDC mean, indicating higher levels of ICD-related distress and 43% said that they would attend a support group. The most common concern on the ICDC was a fear of the ICD firing and 47% of participants indicated that they would like further support coping with fear of shocks. The qualitative findings suggested that most difficult aspects of living with an ICD included worries about the device, identity concerns, practical barriers imposed by having an ICD and physical discomfort. These topics were discussed in a pilot group and patient feedback from this group supported the pertinence of these issues, as well as the value of providing a safe space for patients with ICDs to share their experiences and to ask questions. A bi-monthly
drop-in support group was subsequently developed, with multidisciplinary input from an arrhythmia nurse, clinical psychologist, cardiac physiologist and physical activity specialist, to address each relevant topic whilst also enabling patients to maintain regular contact. Patient feedback shows that all patients find the support group helpful and all would recommend it to friends/family if they were experiencing similar difficulties.
Conclusions: Approximately a third of patients presented with elevated levels of ICD concerns and fear of shocks is a common concern. Worries about device functioning, and the negative impact on daily activities and self-identity are also pervasive. A multidisciplinary support group, addressing key ICD-related concerns whilst providing an opportunity for patients with ICDs to share their concerns and questions, has been highly valued by patients and has reduced levels of ICD distress.