Development of a structured nurse-led follow-up for patients after discharge from the intensive care unit and testing of its effectiveness

Background: The physical and psychological health status of patients after intensive care is frequently compromised due to the consequences of critical illnesses and the intensive care stay. There are indications that patients may benefit from receiving nurse-led follow-up after intensive care but the nature of the intervention and its effects have not been sufficiently investigated. Aims: The aim of this thesis was to develop an intervention of structured nurse-led follow-up for patients after intensive care and test its effectiveness on patients’ long-term physical and psychological health status after intensive care discharge compared with standard care. Methods: The thesis consists of three studies. In Study I, an integrative review of a nurse-led follow-up of patients after discharge from intensive care was performed and an intervention of structured nurse-led follow-up for patients after intensive care was constructed. Studies II and III were prospective, quasi-experimental studies of patients who received a structured nurse-led follow-up after intensive care discharge. The intervention consisted of: (i) a booklet delivered at intensive care discharge, (ii) protocolised clinical surveillance and support with general ward visits from intensive care nurses, (iii) contact during the first week after discharge from the general ward to home and, (iv) an appointment comprising a semi-structured interview and an intensive care visit three months after discharge from intensive care. The control group received standard care. Participants were patients ≥ 18 years of age with ≥72 hour’s intensive care stay. In Study II, the effectiveness of the intervention on health status (Short-Form 36v2 questionnaire) was compared between the experimental (N=73) and control groups (N=75) over five time points, from before admission to intensive care (collected during the ward stay), at ward discharge, three, six and 12 months after intensive care discharge using a mixed effects model. In Study III, symptoms of post-traumatic stress disorder (Impact of Event Scale-Revised), anxiety and depression (Hospital Anxiety and Depression Scale) were compared between the experimental (N=68) and control groups (N=75) three and four times over 12 months after intensive care discharge. Patients’ disturbing memories of the intensive care stay and their psychological reactions (feeling that their life was in danger, sensing a threat to physical integrity, intense fear, helplessness, horror) were collected three months after discharge from intensive care. A mixed effect model tested differences between the groups over time and a regression model predicted post-traumatic stress at three months. Results: Study I: Three patterns of intensive care nurse-led follow-up were detected: i) ward visits, ii) ward visits and appointment(s) to an intensive care follow-up clinic, and iii) a follow-up visit to an intensive care and a phone call two months after intensive care discharge. The results indicated uncertain, primarily descriptive, outcomes of intensive care nurse-led follow-up. There was a lack of continuity between intervention structures. Study II: The structured nurse-led follow-up did not improve patients’ health status compared to standard care. Health status within both groups decreased from before the intensive care admission and over one year after the intensive care discharge. Females in the experimental group reported more bodily pain over the time points than females in the control group and men in both groups. Another trend was an overall worse health status of women in the experimental group compared to men in that group. Patients’ respiratory status was most commonly assessed during an average of three ward visits (range 2 – 10 visits per patient) with a total of 30 intensive care nurses (range 1 – 6 nurses) providing the visits to the experimental group. Rather than focusing on rehabilitation information and activities the patients were most concerned about how weak they were and their lack of endurance when contacted in the first week after discharge from the general ward to home. Of the 68 patients attending the three-month appointment, 56% (n=38) accepted the invitation to re-visit the intensive care. The length of the general ward stay was shorter in the experimental group compared to the control group. Study III: The experimental group had significantly more post-traumatic stress symptoms and anxiety than the control group over the 12 months after intensive care discharge. Proportionally more patients in both groups with post-traumatic stress symptoms at three months (n=34) had disturbing memories of the intensive care stay and psychological reactions compared to patients without post-traumatic symptoms (n=96). Younger age, receiving disability benefits, experiencing helplessness, disturbing memories and intense fear during the intensive care predicted symptoms of post-traumatic stress three months after the intensive care discharge. Conclusion: The intervention of structured nurse-led follow-up for patients after intensive care did not improve patients’ health status compared to the standard care that the control group received. The heterogeneity of the patient groups and the number of nurses providing the intervention might explain the insignificance of the findings. Further effort is needed to develop and measure outcomes of intensive care nurse-led follow-up. The findings indicate that the health status of a large number of patients who survive the intensive care stay is severely compromised over the first year after the ICU discharge, which necessitates a concerted effort to improve that situation.Landspitali University Hospital Research Fund [A-2013-034], The Icelandic Nurses Association [2012], Ingibjörg R. Magnúsdóttir Fund [2012-2014