Abstract 133: "I’m Not the Same Person....": Understanding Cardiac Arrest Survivorship and Long -Term Outcomes From the perspective of Survivors and Families

Abstract

Background: Of those victims that are discharged alive following sudden cardiac arrest (SCA), the five-year survival rate is upwards of 75%. However, the survivor experience of “living” and their quality of life after such a life-changing event can be quite variable. Unfortunately traditional outcome measures in the SCA literature make gross, snapshot assumptions about what constitutes a “good” outcome and rarely account for life after hospital discharge. The objective of this study was to understand the survivor and family/caregiver experience of life after SCA and what outcomes are important to them as “life goes on”. Methods: In-depth qualitative interviews were conducted with survivors and their families/caregivers at various stages of survival. Survivors and family members were interviewed together and separately. The interviews focused on concepts such as what their recovery journey was like, what long-term issues were most important to them and how we might implement measures of such concepts into more research and practice. Interviews were audio-taped, transcribed verbatim and analyzed by the authors using constant comparative thematic analysis techniques. Results: During in-depth interviews with more than 30 survivors and caregivers we heard that despite being a relatively high functioning group, their lives have been deeply affected by their cardiac arrest experience. They spoke about the importance of both psychologic and physical recovery and the influence of latent depression, anxiety, memory-loss, fatigue, infertility, changes in body image and relationships with loved ones. For some there have also been unique challenges with having an implanted cardiac defibrillator (ICD). Spouses/family members spoke about the caregiver burden, anxiety around their loved ones health and the impact of not having any sense of what to expect after discharge. Conclusions: The psycho-social type outcomes identified as very influential by survivors and families are almost entirely unmeasured in the resuscitation literature. This robust qualitative work gives us important insight that we hope to use to design more survivor-centred outcome measures for prospective use in research and practice. (*Abstract will be co-presented with an SCA survivor)