Follow-up care after out-of-hospital cardiac arrest: A pilot study of survivors and families’ experiences and recommendations

Abstract

Background and objectives Cognitive and physical difficulties are common in survivors of out-of-hospital cardiac arrest (OHCA); both survivors and close family members are also at risk of developing mood disorders. In the UK, dedicated follow-up pathways for OHCA survivors and their family are lacking. A cohort of survivors and family members were surveyed regarding their experience of post-discharge care and their recommended improvements. Method 123 OHCA survivors and 39 family members completed questionnaires during an educational event or later online. Questions addressed both the actual follow-up offered and the perceived requirements for optimal follow-up from the patient and family perspective, including consideration of timing, professionals involved, involvement of family members and areas they felt should be covered. Results Outpatient follow-up was commonly arranged after OHCA (77%). This was most often conducted by a cardiologist alone (80%) but survivors suggested that other professionals should also be involved (e.g. psychologist/counsellor, 64%). Topics recommended for consideration included cardiac arrest-related issues (heart disease; cause of arrest) mental fatigue/sleep disturbance, cognitive problems, emotional problems and daily activities. Most survivors advocated an early review (<1month; 61%). Most family members reported some psychological difficulties (95%); many of them (95%) advocated a dedicated follow-up appointment for family members of survivors. Conclusions The majority of OHCA survivors advocated an early follow-up following hospital discharge and a holistic, multidimensional assessment of arrest sequelae. These results suggest that current OHCA follow-up often fails to address patient-centred issues and to provide access to professionals deemed important by survivors and family members.

Qualitative Study of Long‐Term Cardiac Arrest Survivors’ Challenges and Recommendations for Improving Survivorship

“…Many of these symptoms have been reported previously and appear to become chronic problems after arrest. 1 , 3 , 4 , 5 , 13 , 14 , 15 , 16 , 17 , 18 Our findings contribute to this literature by suggesting reasons for the lack of preparedness to confront these challenges (ie, lack of resources, education, and appropriate expectations).…”

Surviving cardiac arrest - what do we know about recovery & survivorship?

“…Authors concluded that a postarrest pathway for rehabilitation and peer support would be beneficial for this group. Similar results were obtained from a survey study in the United Kingdom (UK) [21] and across members of the Sudden Cardiac Arrest Foundation (SCAF) [22]. Survivors and families in the UK advocated for early (< 1 month) follow-up after discharge, to include resources for family members.…”

British Cardiovascular Intervention Society Consensus Position Statement on Out-of-hospital Cardiac Arrest 2: Post-discharge Rehabilitation

“…43 In a recent pilot study, survivors also reported a mismatch between the actual and expected follow-up experience, with over 40% reporting that they would have liked to see another professional in addition to cardiologists and nurses (such as psychologists, occupational therapists and physiotherapists) and identifying issues of mental health, fatigue and cognition as high priorities to address at follow-up. 30 A qualitative survey of relatives of OHCA survivors identified dissatisfaction and frustration concerning a lack of information about what might be expected after discharge and lack of follow-up and poor continuity in healthcare, as well as feelings that their own experience had been neglected. 44 This study identified a need for bespoke booklets describing the cardiac arrest, intensive care unit stay and the importance of continuing care directed both to patients and co-survivors, with a multidisciplinary approach focused on both cardiac and neurological recovery.…”