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.

Keywords: Assessment; Cognitive impairments; Out-of-hospital heart arrest; Patient involvement; Patient outcome; Psychosocial functioning.

Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

© 2021 The Authors.

Figures

Fig. 1

Number of respondents who reported having been followed up by cardiologist (n = 76; 80%), nurse (n = 29; 31%), occupational therapist (n = 4; 4%), physiotherapist (n = 6; 6%), psychologist (n = 10; 11%) and other doctor/allied health professional (n = 14; 15%) vs respondents’ expectations around who should follow them up instead (cardiologist – n = 112, 90%; nurse – n = 32, 32%; occupational therapist – n = 29; 24%; physiotherapist – n = 23; 19%, psychologist – n = 79; 64%; other doctor/allied health professional n = 55; 46%).

Fig. 2

Percentage of respondents indicating quality of care before discharge from hospital (Very Negative = 0%; Mostly negative = 0.8%; Neither positive or negative = 8.2%; Mostly positive = 27.6%; Very positive = 63.4%) and after discharge from hospital (Very Negative = 4.2%; Mostly negative = 8.4%; Neither positive or negative = 24.2%; Mostly positive = 23.2%; Very positive = 40%).

Fig. 3

Most frequently self-reported difficulties following sudden cardiac arrest (percentage of total responses and, in brackets, number of survivors selecting each option): Fatigue = 20% (n = 98); Problems with memory/thinking = 18% (n = 90); Anxiety = 15% (N = 73); Loss of confidence = 14% (n = 68); Low mood = 12% (n = 60); Reduced independence/more physical limitations = 10% (n = 49); Job loss/job change = 6% (n = 30); Pain = 3% (n = 17); Other = 1% (n = 7); None = 0% (n = 1).

Fig. 4

Optimal time for follow-up review according to OHCA survivor – percentage of total responses. 1-month post discharge = 37%; 2 weeks post discharge = 24%; 3 months post-discharge = 16%; When/if necessary – would like to be able to contact team = 11; 6 months post discharge = 8%; %; Other = 3%; Follow-up not necessary = 1%.

Fig. 5

Number of respondents choosing each option: Cause of cardiac arrest (n = 95; 77%), Screening for emotional problems (n = 95; 77%), Heart Disease (n = 95; 74%), Mental fatigue and sleep (n = 88, 72%), Screening for cognitive problems (n = 81; 66%), Daily activities (n = 78, 63%), Relations with family and friends (n = 67, 54%), Secondary prevention (n = 52, 42%), Sex life after cardiac arrest (n = 31, 25%), Other (n = 2, 2%).