What patients think about ICU follow-up services: a qualitative study

INTRODUCTION: UK policy recommendations advocate the use of intensive care unit (ICU) follow-up services to help detect and treat patients' physical and emotional problems after hospital discharge and as a means of service evaluation. This study explores patients' perceptions and experiences of these services. METHODS: Thirty-four former ICU patients were recruited throughout the UK, using maximum variation sampling to achieve as broad a range of experiences of the ICU as possible. Participants were interviewed at home by a qualitative researcher unconnected to their hospital care. Interviews were recorded and transcribed for analysis. We report a qualitative thematic analysis of patients' experiences of ICU follow up. RESULTS: Former patients said they valued ICU follow-up services, which had made an important contribution to their physical, emotional and psychological recovery in terms of continuity of care, receiving information, gaining expert reassurance and giving feedback to ICU staff. Continuity of care included having tests and being monitored, referrals to other specialists and ICU follow-up appointments soon after hospital discharge. Information about physical, emotional and psychological recovery was particularly important to patients, as was information that helped them make sense of their ICU experience. Those without access to ICU follow-up care often felt abandoned or disappointed because they had no opportunity to be monitored, referred or get more information. CONCLUSIONS: Former patients value having ICU follow-up services but many found that their healthcare needs were unmet because hospitals were unable to provide the aftercare they required. Most participants were aware of the financial constraints on the health system. Although they valued ICU follow-up care, they did not want it to continue indefinitely, with many of them declining appointment invitations when they themselves felt they no longer needed them.