Health related quality of life in Critically ill Patients A study of health related quality of life in critically ill patients admitted on the Intensive Care

Health related quality of life (HRQOL) is a relevant outcome measure for patients admitted to the intensive care unit (ICU). Long term outcome for physical and psychological factors, functional status and social interactions are becoming more and more important both for doctors and nurses as well as for patients and their relatives (1;2). Therefore doctors and nurses want to know what a “reasonable” quality of life means to their patients. The main reason for HRQOL research described in this thesis is the lack of knowledge about the outcome of HRQOL in critically ill patients admitted to an ICU. Especially, the time course of changes in HRQOL following discharge from the ICU and during a general ward stay has not been studied. In HRQOL studies in general as well ass in critically ill patients, there is a lack of a clear framework for defining and describing HRQOL. One of the difficulties in HRQOL research is defining what one means by health related quality of life: there is no universally accepted definition. QOL, health status, functional status, and HRQOL are often used interchangeable in the literature (3). Yet each of these terms may reflect different aspects of an individual’s well-being (4). This also may lead to different measurement approaches which may lead to different results. Quality of life is described as a “unique personal perception” (5), influenced by social, psychological, cultural, familial, relational and individual factors. The World Health Organization defines “health” as not only the absence of infirmity and disease but also as a state of physical, mental and social well-being (6). Accordingly, an assessment of health related quality of life should reflect the patients’ physiological and psychological status, social functioning and perception of health. The quality of life applied to health, or HRQOL, takes into account not all dimensions of the quality of life, but those that can be changed by the disease or its treatment. Finally, quality of life may be defined as a concept encompassing a broad range of physical and psychological characteristics and limitations that describe an individual’s ability to function in their environment and derive satisfaction from so doing. Health related quality of life describes the level of well-being of the individual’s life as affected by accident, injury, disease and treatments (7). Recent studies in critically ill patients have measured HRQOL, but an evaluation of conceptual issues is usually missing. In Chapter 2. we therefore discussed conceptual issues specifically related to HRQOL measurement in critically ill patients such as: “why measure HRQOL in critically ill patients?”; “how to define and standardize domains of HRQOL?”, “what utility measures are used in research pertaining critically ill patients?”; “can proxies provide useful information about HRQOL in critically ill patients?”; “does response shift occur in critically ill patients?” and “do post-traumatic stress disorders occur in critically ill patients?”. Evaluating these specific conceptual issues did not yield conclusive results. Some studies reported moderate agreement between patients and their proxies, although lower levels of agreement may be reported for psychosocial or physical functioning. Vigilance for symptoms of post-traumatic stress disorders (PTSD) is needed and early interventions implemented to prevent PTSD. Nursing care while in the ICU and intensive care follow-up may have an important role in recognizing and treatment of psychological problems after hospital discharge. Furthermore, response shift seems an important phenomenon and likely to be present, but is seldom measured when estimating HRQOL in critically ill patients.

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