Psychosocial outcomes of peer support for patients with an inherited cardiac condition
Authors: Frampton K , Sharma S , Behr ER , Webb K , Parry-Williams G , Specterman M , Potterton A , Simmons R , Macallister M 
Published: July 2021

Funding Acknowledgements

Type of funding sources: None.

Introduction

Inherited cardiac conditions (ICCs) are feared for their risk of sudden death. Individuals are often young and diagnosed after the sudden death of an apparently healthy family member. A diagnosis can have a profound psychological impact and negative effect on quality of life. Uncertainty surrounding the natural history of some diseases causes anxiety and concern about existing children or starting a family. Necessary lifestyle adjustments are often associated with a sense of isolation during social engagement with peers. Psychological support for such patients is scarce. However, a specialist nurse led peer group support within the ICC service may improve psychological outcomes and empower patients to support others. 

Purpose

To determine the effect of a nurse led peer support group on subjective psychological symptoms for patients with ICCs.

Methods

A pilot specialist nurse support group was established in February 2020 including 30 patients with ICCs. This consisted of a meeting in person followed by 6 subsequent 2 monthly online video meetings. Each session lasted 2 hours and included a talk by a healthcare professional on an ICC related topic, followed by an open forum for group discussion facilitated by the specialist nurse. An online social media chat forum was also developed. After 1 year, a bespoke questionnaire was distributed to all participants enquiring about the effect of group support on anxiety level, sense of isolation, knowledge about their condition and empowerment to support themselves and others. 

Results

21 (70%) patients aged between 20 and 65 years old (mean age 49) responded. Diagnoses included Brugada syndrome, arrhythmogenic cardiomyopathy, dilated cardiomyopathy, hypertrophic cardiomyopathy and long QT syndrome. All participants agreed that the group provided a comfortable platform to ask questions about their condition. 95% of participants were keen to know more about their condition after diagnosis of which 86% agreed that knowledge about their condition had improved since joining the group. 90% of participants experienced anxiety related to their condition before joining the group of which 76% reported reduced levels since joining. 76% felt isolated after their diagnosis of which 86% reported that these feelings had lessened since joining the group. 86% of the group agreed that group discussion empowered them and helped them support other affected individuals. 

Conclusion

A pilot study support group for patients with ICCs reduced anxiety and sense of isolation, improved knowledge, and sense of empowerment and willingness to support other patients in ≥ 80% of attendees. There is potential that patient support groups can be kick started by specialist nurses and subsequently allowed to run by patients themselves. Apart from improving psychological outcomes, such practice may reduce the workload for the ICC multidisciplinary team.