Because critical care clinicians are nourished by the culture of survival, until recently they have prioritized patient survival to long-term outcome, However, a number of ICU patients experience significant problems with physical, psychological, and social functioning for some time after discharge from the ICU, In addition to mortality, health-related quality of life (HRQOL) has increasingly been claimed as an important and entire outcome variable of interest. Quality of life is constituted, but not restricted, by the sum of values themselves difficult to assess, such as cognitive, affective, and spiritual capacity of a person, and submitted to social, psychological, cultural, familial, relational, and individual factors. 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.
Evaluating HRQOL in patients surviving the ICU leads to multiple reflection, such as global care, public health, psychological consequences of ICU treatment, and medical ethics. Indeed, seriously ill patients base their preferences about life-sustaining therapies according to how burdensome the ICU will be and how much handicap is to be dreaded from the ICU experience.2 This may have a direct impact on how the ICU should be used in seriously ill patients with previously altered quality of life. Along this line, it has been recently pointed out that HRQOL was as good at predicting mortality in ICU patients as the APACHE (acute physiology and chronic health evaluation) II score. HRQOL is a dynamic and variable phenomenon across different patients and is time varying for the same patient. Moreover, HRQOL is a more relevant value when it is considered by the patient, and the scales used seem especially useful within the framework of comparative studies, and much less relevant in a singular situation.
Despite the major public health issue that HRQOL represents in ICU survivors, this has been the subject of only few investigations. Age, comorbidities, and severity at ICU admission have been reported as determinants of HRQOL. Similarly, any preexisting disease significantly contributes to affect the extent of the decline of HRQOL after critical care. In addition, the finding that altered HRQOL is associated with dramatic levels of anxiety, depression, and posttraumatic stress disorder raises the question of the natural course of these symptoms after ICU discharge and highlights the need for multidimensional preventive, preemptive and curative, strategies.
In this issue of CHEST (see page 377), Hofhuis and colleagues assessed HRQOL using the Short Form 36 in 252 critical care survivors. This 6-month assessment was then compared with baseline HRQOL as estimated by family members, with 3-month HRQOL as assessed by the patients, and with HRQOL in an age-adjusted general population. Three important messages can be drawn from this study: (1) baseline HRQOL in critical care survivors is worse than in the general population; (2) HRQOL was better in the patients who ultimately survived compared to those died; and (3) HRQOL worsens significantly after an ICU stay, returning to baseline only at 6 months, even though recovery was incomplete for physical functioning, general health, and social functioning. We believe that these original results are of outmost importance for both Canadian health-care providers and consumers. It is a known fact that demand and supply are obligatory for trade service. But it doesn’t mean the ordinary trade interrelation because for example you may order drugs via the Internet. Beside overall survival, critical care clinicians should provide our survivors with early post-ICU care, including medical and technical support, but also psychological support for these patients and their families left to cope on their own. Indeed, a major part of recovery is accomplished on discharge from the hospital, and functional readaptation including physiotherapist and psychologists could have a durable effect. Moreover, better defining the needs for medicosocial care and improving post-ICU network (specialized step-down units, rehabilitation or readaptations units, mobile outreach teams) should be considered as a priority.
To date, very few ICUs have specialist psychological services to help with the aftermath of the illness experience. There are promising and simple therapeutic interventions, such as ICUs diaries, post-intensive care consultation, and even sequential follow-up by intensive care clinicians several weeks after discharge that may be useful but that still need to be evaluated. The results of a British study evaluating the impact of an intensive care follow-up program in improving longer-term outcome from critical illness will certainly offer further evidence of the need to spread such programs. After many years of underestimation, there is an awareness of the psychological sequelae of critical illness for patients and their family caregivers. With this, there is a responsibility to assess and appropriately help those who are unable to manage their distress. However, currently, the development and application of specialist psychological services after an episode of critical illness, possibly using a stepped-care model, is in its infancy.
The study from Hofhuis et al raises several questions that remain unanswered. First, longer follow-up might help identify time course of HRQOL in a general ICU population or in a given burdensome disease such as ARDS, septic shock, more particularly in seriously ill or elderly patients. Second, studies have highlighted that agreement between estimates of premorbid HRQOL provided by survivors and their substitute decision makers was poor. Routine measurement of HRQOL in elderly patients and those with severe comorbidities might help assess ICU burden with less bias. Last, the relevance of decreased HRQOL after critical care still needs to be addressed, particularly in terms of making healthcare decisions. Besides appraising informational needs of patients and relatives, the evidence of decreased HRQOL in seriously ill patients should convince those who are routinely caring for them to intensify discussions with patients (and/or proxies) as to identify their preferences regarding ICU admission and life sustaining therapies. We also believe that proactive strategies need to be evaluated for their impact on HRQOL, anxiety and depression, but also on posttraumatic stress disorder. These strategies could begin very early (before ICU discharge) and should be maintained by follow-up teams until recovery. Last, beyond focusing interventions impacting on overall survival, critical care clinicians need to use combined outcome variables when both survival and quality of life are of interest.
In summary, assessing HRQOL questions the objective of intensive care. Regarding survivors of intensive care, It is not only the quantity (duration) of life that seems important to evaluate, but also its quality, and the paradox of QOL is to evaluate a qualitative value by using quantitative tools. We discourage physicians from using the results of HRQOL evaluations as elements justifying, in a specific situation, an end-of-life decision. However, we urgently need to identify strategies available from ICU discharge to improve HRQOL, in terms of prevention or global care improvement, including physical and psychological rehabilitation for the patient and, when needed, proxies. Large epidemiologic studies are still needed. Evaluating relations between post-traumatic stress disorder and HRQOL should be an interesting challenge. In addition, interventional studies may help to define the impact of the invasiveness of ICU interventions, and of communication strategies on HRQOL and associated symptoms. These studies will need to take into account anthropologic and cultural bias in HRQOL measurement, to include more strictly defined populations, with specific and complementary functional measure-ments, and to add to patient’s related variables, socioeconomic variables, and availability of a large and comprehensive cost-covering system. Last, HRQOL and symptoms of stress, anxiety, and depression should be measured concomitantly in both patients and relatives. Indeed, comparison of HRQOL and other symptoms in patients and relatives at different time points may help identify whether risk factors for altered HRQOL are the same in both subjects, and whether persistence of these symptoms in one of them can delay recovery in the other one.