SAN FRANCISCO—Until recently, mortality in patients with acute respiratory distress syndrome (ARDS) was so high that survival alone was the key treatment outcome. As death rates have declined, both physicians and patients have begun to look at other short- and long-term outcomes, particularly quality of life. For example, adequate pain control has emerged as an important issue. And new evidence suggests that many ARDS survivors have reduced function for at least several years after the acute crisis has resolved.

“If we really want to understand the effect of critical illness and ARDS on our patients’ lives—and understand the potential our therapies have [to improve] their lives—we are going to have to look beyond the ICU [intensive care unit] doors,” explained J. Randall Curtis, MD, MPH, at the American Thoracic Society 97th International Conference.[1] In a comparative study of ARDS survivors and patients who had recovered from other critical illnesses, Dr. Curtis and colleagues found that the ARDS survivors had a markedly poorer quality of life, even though the two groups were matched for age and illness severity.[2]

Dr. Curtis, an Associate Professor of Medicine at the University of Washington in Seattle, suggested a number of strategies that can improve patients’ quality of life while they are still in the ICU. As a start, he said, more emphasis should be placed on pain control in ARDS patients. In a study of more than 3,000 patients hospitalized for serious illness, those with multisystem organ failure or sepsis reported the same level of pain as did patients with cancer or end-stage chronic obstructive pulmonary disease.[3] More than half of the overall group said that they had moderate to severe pain, and 15% reported severe pain. Many patients said they were dissatisfied with the pain control treatments they had been given and rated ICU physicians as one of the least adept groups at managing pain.

Continuity of care is also important. Patients and families are more likely to be dissatisfied with treatment if there are more than two attending physicians or if the nurse caring for them changes each day.

Quality of life is also an important issue for patients who will die of ARDS, Dr. Curtis noted. Patients and families are more likely to report a good “quality of death” if a patient dies at home rather than in a hospital, nursing home, or other health care setting. While it is not always possible to provide treatment for ARDS patients outside of the ICU; some centers are investigating the feasibility of sending patients home (with appropriate supportive services) to die. And perception of the quality of death decreases as the number of invasive treatments increases.

Studies have shown that the risk of death from ARDS decreases substantially about 30 days after the onset of the acute disease. About three to four weeks after patients have been weaned from the ventilator, stated Craig Weinert, MD, MPH, an Assistant Professor of Medicine at the University of Minnesota in Minneapolis, a patient’s survival prognosis from ARDS is positive. As ARDS is often a secondary condition, longer-term survival may be affected by the underlying pathology—immunosuppression, trauma, malignancy, or infection.

Survivors of ARDS have reduced pulmonary, physical, and mental functioning. Why this occurs is not yet known. Hypotheses include persistent muscle dysfunction, reduced cerebral oxygenation, depression, and posttraumatic stress disorder (PTSD).

In most cases, pulmonary function remains diminished after extubation, but it begins to increase by three months and improves even further by six months. Dr. Weinert said, “In general, after 12 months there is not that much [more] improvement. People have only mild spirometric dysfunction, on average.… However, respiratory symptoms and decreased exercise capacity may persist for years.” The survivors’ ability to perform activities of daily living improves significantly in the first six months after ARDS resolution, but in most cases little further improvement is seen beyond that.

Study data indicate that 50% to 60% of ARDS patients return to work, at least part-time, explained Kenneth P. Steinberg, MD, an Associate Professor of Medicine at the University of Washington in Seattle. However, it is not just physical impairment that influences a patient’s ability to return to work; cognitive impairment appears to be a determinant as well.

Cognitive problems are common in ARDS survivors. In a study involving 74 such patients, all had an impairment in one of the following: IQ, memory, attention span, mental processing speed, or executive function.[4] Cognitive function improved over time; however, 61% of patients still showed impairment at one year, explained Ramona Hopkins, PhD, lead author. “Processing speed was the most common cognitive impairment. At hospital discharge about 70% [of the 74 patients] had problems with how quickly they could process information.… At one year this dropped to 35%,” explained Dr. Hopkins, who is a member of the Departments of Psychology and Neuroscience at Brigham Young University in Provo, Utah.

ARDS survivors often complain of depression, personality changes, anger, guilt, and disturbing dreams and memories of their ICU stay. “[PTSD] is fairly common in these patients,” Dr. Steinberg said. In fact, a study from Munich showed that approximately 25% of ARDS survivors suffered from PTSD, he said.[5] (In comparison, the incidence of PTSD in United Nations soldiers is less than 2%.)

Patients and physicians benefit from post-ICU follow-up, explained Margaret S. Herridge, MD, MS, MPH, who is with the University of Toronto in Ontario. ARDS survivors feel rushed by those around them “to be better in just a few months, [which] simply is not realistic,” said Dr. Herridge. “Patients need to understand that they are not going to feel better for at least a year—and maybe longer.” Thus, patients appreciate the informal support that physicians give them during follow-up visits. Follow-up is beneficial for physicians because it helps establish ICU and post-ICU determinants of morbidity and how these can be remediated, Dr. Herridge suggested. Patient follow-up also allows her team to visualize recovery in their hospitalized ARDS patients: “If we can somehow get [our patients through their illness] to ICU discharge, … [we feel that] they have the ability to recover.”

Dr. Curtis stressed another aspect of long-term follow-up. He urged physicians to pay more attention to the effect on patients of the economic costs of ARDS—the medical expenditures beyond hospital charges and loss of income. Only by doing so will it ever be possible to perform cost-benefit analyses of ARDS treatments—or to maximize survivors’ quality of life.

—Kristin Della Volpe

References
1. Curtis JR, Weinert CR, Steinberg KP, et al. What happens to survivors of ARDS? Presented at: American Thoracic Society 97th International Conference; May 20, 2001; San Francisco.
2. Davidson TA, Caldwell ES, Curtis JR, et al. Reduced quality of life in survivors of acute respiratory distress syndrome compared with critically ill control patients. JAMA. 1999;281:354-360.
3. Desbiens NA, Wu AW, Broste SK, et al. Pain and satisfaction with pain control in seriously ill hospitalized adults: findings from the SUPPORT research investigations. For the SUPPORT investigators. Crit Care Med. 1996;24:1953-1961.
4. Hopkins RO, Weaver LK, Pope D, et al. Neuropsychological sequelae and impaired health status in survivors of severe acute respiratory distress syndrome. Am J Respir Crit Care Med. 1999;160:50-56.
5. Schelling G, Stoll C, Haller M, et al. Health-related quality of life and posttraumatic stress disorder in survivors of the acute respiratory distress syndrome. Crit Care Med. 1998;26:651-659.

Return to table of contents