Rehabilitation activities, out-patient visits and employment in patients and partners the first year after ICU: A descriptive study

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Summary

Objectives

To describe the influence of critical illness on patients and their partners in relation to rehabilitation, healthcare consumption and employment during the first year after Intensive Care Unit discharge.

Design

Longitudinal, observational and descriptive.

Setting

Five Danish Intensive Care Units.

Methods

Data were collected from hospital charts, population registers and interviews with 18 patients and their partners at 3 and 12 months after intensive care discharge. Descriptive statistical analysis was performed.

Results

Post-discharge inpatient rehabilitation was median (range) 52 (15–174) days (n = 10). Community-based training was 12 (3–34) weeks (n = 15). Neuropsychological rehabilitation following brain damage was 13–20 weeks (n = 3). Number of out-patient visits 1 year before and 1 year after were mean 3 versus 8, and General Practitioner visits were 12 versus 18. Three patients resumed work at pre-hospitalisation employment rates after 12 months. After the patients’ stay in intensive care, partners’ mean full-time sick leave was 17 (range 0–124) days and 21 (range 0–106) days part time. Partners often had long commutes.

Conclusion

Most patients had comprehensive recovery needs requiring months of rehabilitation. Some partners needed extensive sick leave. The study reveals the human cost of critical illness and intensive care for patients and partners in the Danish welfare system.

Introduction

Critical illness and admission to the intensive care unit (ICU) radically affect patients and their close relatives and the long-term consequences of intensive care have been identified as an important domain of inquiry that is of international interest (Angus and Carlet, 2003a, Blackwood et al., 2011). More knowledge is needed on the actual trajectories of patients and their partners and the practical challenges they face during post-ICU convalescence.

In addition to potential disease-specific complications, ICU survivors experience general physical and psychosocial difficulties (Broomhead and Brett, 2002, Desai et al., 2011). Studies have shown that they commonly develop Post-Intensive Care Syndrome (PICS), which includes physical, cognitive or mental health disorders that persist for months to years after critical illness (Needham et al., 2012). These complications include weakness, fatigue, shortness of breath, stridor, reduced mobility, loss of appetite, hair loss, neuropathy, insomnia, impaired memory, poor concentration, nightmares, hallucinations, flashbacks and hyper-arousal (Volk and Grassi, 2009). Depression, post-traumatic stress disorder (PTSD) and anxiety are also common post-ICU complications (Hopkins and Girard, 2012).

Patients’ health related quality of life has been reported to be generally lower than that of the background population in the first year after ICU discharge (Chaboyer and Elliott, 2000, Dowdy et al., 2005) and perhaps even longer (Chaboyer and Elliott, 2000, Dowdy et al., 2005, Ringdal et al., 2010, Ulvik et al., 2008). Gender and age differences have been reported in post-ICU psychological morbidity, as women and younger patients seem to be more prone to PTSD, anxiety and depression (Rattray and Hull, 2008, Schandl et al., 2012). The consequences of critical illness fundamentally affect ICU survivors’ recovery and chances of returning to work (Hopkins and Girard, 2012).

Close relatives are in a key position to support the patient throughout admission and convalescence (Bergbom and Askwall, 2000, Cutler et al., 2013, Davidson et al., 2007, Engström and Söderberg, 2007). At the same time, relatives are deeply affected by the illness event and its aftermath (Ågård and Harder, 2007, Linnarsson et al., 2010, Paul and Rattray, 2008). In some cases families also develop Post-Intensive Care Syndrome (PICS-F), which includes adverse psychological outcomes such as anxiety, acute stress disorder, PTSD, depression and complicated grief (Davidson et al., 2012). Also, family members often provide hours of daily informal caregiving, limiting their capacity to work (Griffiths et al., 2013, Van Pelt et al., 2007).

ICU patients are heterogeneous regarding characteristics such as cause of illness, age, comorbidities, ICU length of stay, complications and family situation, resulting in a number of methodological challenges in ICU research (Herridge, 2007). Important aspects of the patients’ and relatives’ situations have not been sufficiently addressed in the existing body of literature. First, patient characteristics often lack a description of health status prior to admission, although this has a fundamental impact on overall post-ICU quality of life (Orwelius et al., 2010). Second, major complications after discharge are often inadequately described. Third, when including relatives in post-ICU research the type of relation is rarely specified, although important differences have been found in the way the burden is experienced by the partner, children, friends, parents or other relatives (Foster and Chaboyer, 2003). Finally, the socioeconomic context of convalescence in various national settings is usually lacking, offering the reader little chance to assess the potential impact of reported findings.

Our study was conducted in Denmark, where intensive and intermediate care is publicly financed. Acute care and General Practitioners (GP) are integral parts of the Danish National Health Service. Recuperation including intensive rehabilitation programmes and community-based training are provided through public health insurance (The Ministry of the Interior and Health, 2008). An insignificant part of health care is financed through private insurance. Some hospitals offer follow-up programmes for ICU survivors and their families, but the programmes have not been standardised (Egerod et al., 2013).

If unable to work, non-retired ICU survivors are eligible for benefits matching their usual salary for up to a year, depending on their terms of employment. Alternatively, they are eligible for public benefits at lower rates. Hereafter, depending on the nature of disability, benefits are considerably reduced. Also, partners who are temporarily unable to work during the patients’ critical illness are eligible for benefits for a limited time provided they have a medical statement. Retirement age is currently changing from 65 to 70 years of age. Early retirement starts at 60 years. The employment rate of Danish women (70%) is among the highest in the world (OECD, 2013). If patients require help in their homes for a period of time after discharge, and the partner agrees to provide this care, the partner is eligible for temporary leave to care for the patient up to six months with compensation for lost income.

Section snippets

Objective

The purpose of this study was to describe the influence of critical illness on patients and their partners in relation to rehabilitation, healthcare consumption and employment during the first year after ICU discharge.

Sample

The study was part of a larger project describing post-ICU recovery in ICU survivors and their partners. The design was longitudinal, observational and descriptive. Patients (n = 18) and their partners (n = 18) were recruited consecutively from five units: four general ICUs and one neurointensive care unit at a university hospital and a regional hospital in Denmark in 2009. Inclusion criteria pertained to the patient: (1) ICU survivors aged 25–70 years (potential working age), (2) intubated more

Results

In the following we report on the patient trajectory, the partner trajectory and outpatient visits of patient and partner at 12 months before and 12 months after the ICU admission.

Discussion

To increase insight into the potential hidden human costs and societal burdens that result from critical illness and intensive care, this study attempted to describe the influence of critical illness on patients and their partners in relation to rehabilitation, healthcare consumption and employment during the first year after ICU discharge. Our main findings revealed that the lives of patients and partners were disrupted by on-going rehabilitation, outpatient visits, commuting and employment

Conclusion

The study offers insight into some of the everyday challenges facing ICU survivors and their partners in the first year after critical illness. Most patients had comprehensive rehabilitation needs requiring months of training. Public rehabilitation varied according to need and availability. Most partners needed extensive sick leave to tend to the patients or deal with their own situations. The study illustrates some of the hidden and overt human costs of critical illness and intensive care for

Conflicts of interest

The authors have no conflicts of interest.

Contributions

ASÅ, KL, ET, IE contributed in the conception and design of the study; ASÅ, IE in drafting the manuscript; ASÅ, KL, ET, IE in improving the manuscript; the final approval was made by ASÅ.

Acknowledgements

We are grateful to the participating patients and partners for sharing their experiences of life after ICU. Also, we thank the ICU staff who facilitated the collection of data. The study was supported by grants from The Danish Nurses’ Organization, The Aase and Ejnar Danielsen Foundation, The Novo Nordisk Foundation, The Lundbeck Foundation, The Health Insurance Foundation, The Central Jutland Region, and Dept. of Anaesthesia and Intensive Care, Aarhus University Hospital. The funding sources

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