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Background

Annually, around 75.000 patients are admitted to the intensive care unit (ICU) in the Netherlands (website stichting-NICE.nl). Every day, doctors have to make choices regarding ICU admission and treatment policies. Due to the lack of data on the consequences of certain treatment choices on the quality of life years after an ICU admission, these choices are often very difficult and cannot always be supported by scientific evidence.

Studies show that one year after ICU discharge, more than half of the patients still have physical and/or psychological problems and symptoms. There are indications that these symptoms may have negative consequences for work and income. In addition, a reduced health status post ICU leads to more use of healthcare in the first year after ICU discharge.

For the Dutch situation, there is no data available on the long-term consequences of ICU admissions in terms of physical, mental and cognitive health, health care needs and use of care. Also, little is known about patient- and ICU-related causes of physical and psychological consequences after ICU admission. Therefore we setup a long-term follow-up project called: Measuring cONsequences of InTensive care fOR Itensive Care unit patients; MONITOR-IC

Our aim

The aim of the MONITOR-IC project is to gain insight into the long-term outcomes 5 years post-ICU in order to improve patient care

Relevance

This research provides insights and knowledge about the effects of critical illness on long-term outcomes, need of care and care use. Previous research that studied long-term consequences post ICU were often limited to very specific patient groups (for example, patients treated for sepsis).

The MONITOR-IC research project provides important insights and information for patients, healthcare professionals, managers and health insurers in designing and evaluating (after) care, taking into account their health status and patient needs (person centered care).

With these long-term insights, patients will be informed more extensively about possible consequences of an ICU admission on physical, psychological, cognitive (processing of information in the brain) and social functioning. In addition, it will be easier to study specific patient groups because of the inclusion of thousands of patients. Currently, such insights are lacking for many patient groups. Long-term effects of organizational changes in ICU care will also be evaluated.

This research provides more insight into the relationship between health perception (quality of life) and healthcare costs; the so-called "value-based healthcare". With this data, we have the dialogue whether the care provided is in proportion to the investment (care costs).

Research questions

The research questions of this project are:

  1. What is the quality of life of people after ICU admission, how does this change during 5 years after ICU admission and what factors influence this?
  2. What are the socio-economic consequences of an ICU admission for people till 5 years after their admission and what are influencing factors ?
  3. To what extend do people seek informal and professional care after an ICU admission, how does this care use changes during the 5 years post ICU and what factors are of may influence this?
  4. How does healthcare consumption and healthcare costs relate to quality of life?
  5. What is the need for care and support for people during 5 years after ICU admission and what factors influence this?

Quality of life, socio-economic consequences and health care use after an ICU admission are adjusted respectively, for quality of life, socio-economic status and care utilization prior to ICU admission.

Expected results and application

The research contributes to new insights about long-term outcomes post ICU from a patient perspective, which can be used for multiple purposes:

  1. better provision of information to patients and their relatives
  2. increase of evidence for treatment choices for many specialties, and for intensive care in particular
  3. better coordination of care and person oriented organization of care for former ICU patients
  4. adjustments in policy for (former) ICU patients
  5. screening instruments for early detection of long-term problems
  6. information for health insurers for health care procurement and for professional associations for guideline development
  7. detecting redundant ICU care
  8. evaluation of changes in ICU care policy on long-term outcomes

Research design

This is a multicenter prospective cohort study conducted in 7 ICUs in the Netherlands in which all ICU patients ages 16 years and older with a minimum ICU stay of 12 hours, are asked to participate and then followed for a period of five years. .

The study started on July 11 2016 at the Radboudumc (Nijmegen) and expanded to 6 other hospitals: WZ (Nijmegen), Maasziekenhuis Pantein (Boxmeer), Bernhoven hospital (Uden), Jeroen Bosch Ziekenhuis (‘s-Hertogenbosch area), Rijnstate hospital (Arnhem) and Amphia hospital (Breda).

The information required to answer research questions come from questionnaires that are sent at set time points (Figure 1) or can be completed via the website, medical information is extracted from the medical file, and cost data from the health insurers.

Figure 1. Overview of measuring moments and information sources
Before/during ICU admission At hosptial discharge At 3 months post-ICU At 12 months post-ICU At 24 months post-ICU At 36-48 months post-ICU At 60 months post-ICU
Demographics and disease related data X            
Mortality     X X X   X
Fraily questionnaire X X X X X   X
Quality of life questionnaire X   X X X X X
Anxiety and depression questionnaire X   X X X   X
Cognition questionnaire X   X X X   X
Post-traumatics stress disorder questionnaire     X X X   X
Questionnaire about health care needs     X X X   X