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.

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%).