ICU-recovery in Scandinavia: A comparative study of intensive care follow-up in Denmark, Norway and Sweden

Summary

Objectives

The aim of our study was to describe and compare models of intensive care follow-up in Denmark, Norway and Sweden to help inform clinicians regarding the establishment and continuation of ICU aftercare programmes.

Methods

Our study had a multi-centre comparative qualitative design with triangulation of sources, methods and investigators. We combined prospective data from semi-structured key-informant telephone interviews and unreported data from a precursory investigation.

Results

Four basic models of follow-up were identified representing nurse-led or multidisciplinary programmes with or without the provision of patient diaries. A conceptual model was constructed including a catalogue of interventions related to the illness trajectory. We identified three temporal areas for follow-up directed towards the past, present or future.

Conclusions

ICU follow-up programmes in the Scandinavian countries have evolved as bottom-up initiatives conducted on a semi-voluntary basis. We suggest reframing follow-up as an integral part of patient therapy. The Scandinavian programmes focus on the human experience of critical illness, with more attention to understanding the past than looking towards the future. We recommend harmonization of programmes with clear goals enabling programme assessment, while moving towards a paradigm of empowerment, enabling patient and family to take an active role in their recovery and wellbeing.

Introduction

Recovery after critical illness and therapy in the intensive care unit (ICU) is receiving more attention, as survival is increasing and sequelae become evident (Desai et al., 2011, Needham et al., 2012, Griffiths and Jones, 2007a). Many patients have physical, emotional and cognitive issues after the ICU stay (Needham et al., 2005). Neuro-psychological problems include delirium, anxiety, depression, memory loss and post-traumatic stress leading to reduced social functioning and lower quality of life (Broomhead and Brett, 2002, Griffiths and Jones, 2007b). Physical issues include muscle weakness, reduced mobility, numbness, taste changes, sleep disturbances and breathlessness (Jones and Griffiths, 2002).

Attention to post-ICU recovery is gaining momentum as ICU-staff offer various types of intensive care aftercare ranging from single follow-up consultations to outpatient clinics and rehabilitation programmes (Griffiths et al., 2006). Many programmes in the United Kingdom (UK) include a rehabilitation package, whereas follow-up in the Scandinavian countries is usually limited to hospital visits and dialogue. A randomised clinical trial (RCT) at three UK hospitals showed that self-help rehabilitation in addition to scheduled follow-up visits was effective in aiding physical recovery and reducing depression (Jones et al., 2003). A similar programme at three other hospitals, however, failed to demonstrate effectiveness in cost and quality of life at 12 months after ICU discharge, and concluded that more studies were needed to explore the effects of early mobilisation, delirium, cognitive dysfunction, and the role of relatives in recovery from critical illness (Cuthbertson et al., 2009). A qualitative UK study showed that patients appreciated ICU follow-up for continuity, information, reassurance and feedback (Prinjha et al., 2009). An Australian RCT found that a home-based physical rehabilitation programme failed to promote recovery and concluded that future research should identify individuals that benefit most from the intervention (Elliott et al., 2011). An Italian observational study of psychological support in ICU found lower rates of anxiety and depression after the intervention (Peris et al., 2011). A Swedish study showed that the ICU-diary concept was associated with improved health related quality of life during a three-year follow-up period after critical illness (Backman et al., 2010). Surveys of patients and their families at two different facilities in Sweden showed high satisfaction with nurse-led intensive care aftercare programmes (Glimelius et al., 2011, Samuelson and Corrigan, 2009), and a descriptive study of a Swedish multidisciplinary follow-up programme illustrated the value of identifying untreated physical and psychological problems in ICU survivors (Schandl et al., 2011).

The historical roots of ICU follow-up can be traced back to several initiatives. In Denmark, Norway and Sweden nurses started keeping intensive care diaries in the early 1990s to help the patients make sense of their illness trajectory during recovery (Egerod et al., 2011). In many settings the diary handover was scheduled as a follow-up visit at the hospital. These initiatives were based on ICU-nurses’ intuitive reasoning and the point of departure was a paradigm shift towards patient emancipation in the 1980s.

In the UK, ICU-rehabilitation dates back to studies in the early 1990s (Sharland, 2002). Griffiths and Jones were pioneers in intensive care aftercare, and were among the first to describe ICU-rehabilitation in relation to stages of the illness trajectory: ICU-stay, discharge to ward, discharge to home and 2–12 months after ICU (Griffiths and Jones, 1999, Griffiths and Jones, 2002). Follow-up programmes in the UK were interdisciplinary and followed the scientific thinking of medicine, in contrast to the existential thinking of many Nordic nurses in the 1980s and 1990s. ICU rehabilitation at a UK site involved routine ICU follow-up with patient activation during a six-week rehabilitation package (Jones et al., 2003). This marked a new approach of combining follow-up (reviewing the ICU-stay) and rehabilitation (systematic physical recovery). Another UK initiative was a nurse and patient initiated support group (ICU-Steps) providing web-based support (smartphone apps) and drop-in meetings after formal rehabilitation had ended in the local area (Peskett and Gibb, 2009). Finally, more initiatives are emerging to standardise follow-up services such as rehabilitation after critical illness by NICE guidance (National Institute for Health and Clinical Excellence, 2009).

National and international studies of ICU follow-up and rehabilitation show variability in content, structure and outcome measures, leaving the evidence somewhat inconclusive. We assumed that a catalogue of goals, interventions, assessments and desired outcomes might provide the basis for further development and optimisation of the concept. The aim of our study was to describe and compare models of intensive care follow-up in Denmark, Norway and Sweden to help inform clinicians regarding the establishment and continuation of ICU aftercare programmes.