The forgotten patients: What happens to intensive care unit survivors five years after discharge?

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A unique and richly detailed long-term study of survivors of severe requiring intensive care found that even those who were previously healthy, young and working did not regain the physical or psychological health they had before their illness.

This observation has serious implications for patients, caregivers, and (ICU) practice, as well as for health-care utilization and costs, which were cited as roughly two to five times higher for this group than the costs incurred by similar typical workers.

“There has been a limited understanding until this study that severe critical illness is a traumatic, life-altering event for patients and their families and needs to be recognized as such,” says Dr. Margaret Herridge, the co-principal investigator of the study, Director of ICU Research at (UHN) and Associate Professor, University of Toronto (U of T). “People are ashamed. They and others feel that because the patients survived, they should be happy, grateful and that all is well. But that is far from the reality.”

The study, “Functional Disability 5 Years after ” is published in the April 7, 2011 edition of the New England Journal of Medicine. This is a follow-up of the “One-Year Outcomes in Survivors of Acute Respiratory Distress Syndrome,” published in the New England Journal of Medicine in February 2003.

Sixty-four surviving patients – 86 per cent of the patients from the first year follow up study – were followed closely throughout the five years after their ICU discharge. Their average age was 44, very few had pre-existing medical conditions and the vast majority were working prior to their critical illness. (The ICUs included those at Toronto General and Toronto Western Hospitals, University Health Network; St. Michael’s Hospital; Mount Sinai Hospital; and Sunnybrook.)

All patients had acute respiratory distress syndrome (ARDS), a severe form of lung injury and inflammation that can result in life-threatening reductions in oxygen and the need for prolonged support on mechanical ventilators. About 35-40 per cent of these patients die from this illness in the ICU, and it is estimated that there are more than 17,000 Canadian cases per year. ARDS is considered an important and costly public health issue. The study patients remained in the ICU for about 26 days, and were ventilated for most of their stay. On average, they also spent an additional 49 days in the hospital.

Patients were interviewed in person, examined and tested in a follow-up clinic at UHN or in their homes as part of a home visit at regular intervals during the five year follow-up. This was the first time that former ICU patients with ARDS were followed systematically and in-person for such a lengthy time, allowing researchers to gather detailed qualitative and quantitative data and gain crucial insights into this group of patients and their caregivers.

Generally, five years after discharge, these patients had not returned to normal physical functioning, notably in their ability to exercise and in the quality of life they had before their illness in the ICU. Especially low were their scores on general health and vitality. Some required further operations on their tracheas, others had ongoing disabilities in their knees or elbows, and some had new or recurrent airways disease. Still others voiced concerns over scarring from lines, tubes or tracheostomies inserted during their ICU treatment. Others suffered from hearing loss, stiff joints from immobility during the ICU stay, voice changes, tooth loss and one had parts of both feet amputated.

Gord Marshall, 61, who was in the ICU at Toronto General Hospital for about five months from 1998-1999, recalls what it was like waking up from a drug-induced coma lasting months. “I was on a respirator, I had a wound in my gut packed with gauze, and I couldn’t lift my arms or legs. I could only roll my eyes. It was spring when I woke, but I thought it was winter and tried to wish my nurse ‘Merry Christmas.’”

As a result of his stay in the ICU, Gord lost 45 kilograms (100 pounds), he was operated on 17 times because his trachea collapsed from being ventilated, he had to have plastic surgery for his painful bed sores, and he fought through a bout of bleak depression for which he obtained treatment. Learning to walk again was a struggle, requiring multiple weekly physiotherapy sessions for about eight months. And Gord never was able to return to work full-time. Even now he must use a cart to play a few rounds of golf, walk slowly up the stairs in his home and to his car in the driveway, or risk getting winded since he has difficulty breathing. “I used to be able to do everything”, says the former jogger, “Now my life is full of adjustments. I can’t do the things I used to do.”

From the in-person interviews, the researchers were able to elicit sensitive data on the emotional suffering that accompanied the patients’ physical impairment during the five years of follow-up: 51 per cnet of the patients reported at least one episode of physician-diagnosed depression, anxiety or both; one patient suffered from post-traumatic stress disorder; and others from severe agitated depression and agoraphobia, one patient afraid to go out outside because of germs and possibly getting sick again.

Substantial mental health challenges were also voiced by the patients’ families. Twenty-seven per cent spoke about anxiety, depression, and post-traumatic stress disorder. Other problems included job loss, and disputes over disability and insurance claims. And although at the five-year follow-up, 77 per cent of patients had returned to work, they often required a gradual transition to work, a modified work schedule, or job retraining with supporting justification and documentation from the research team.

Moreover, the costs reported for the patients with ARDS are higher than those incurred by healthy workers (more than $5,000 in comparison to $1,100 — $3,200 per year) and are closer to the costs among patients with chronic disease.

“This has important public health ramifications, since these results are for relatively young, previously working persons who do not return to normal after one episode of ICU critical illness,” explains Dr. Angela Cheung, co-principal investigator and general internist at UHN, Senior Scientist at Toronto General Research Institute, Associate Professor at U of T. “In Canada, we have a large population of aging baby boomers. This older group of patients with coexisting illness will likely have more difficulty in recovering from a critical illness.”

Both patients and families confided that this wide spectrum of problems contributed to social isolation and sexual dysfunction.

“This data is of enormous benefit to researchers and clinicians around the world as we strive to develop therapies and follow-up interventions that can lessen the long-term impact of critical illness,” says Dr. Tom Stewart, Physician-in-Chief and Chief Clinical Officer, Mount Sinai Hospital, Associate Physician-in-Chief, Universal Health Network (UHN), Professor, U of T, and one of the co-authors. “This is our first detailed insight into what these patients and their families go through long-term. This valuable data will guide us on what specifically we can target to help patients and their caregivers.”

Andrea Matte, Clinical Research Coordinator in the Medical Surgical ICU at UHN, respiratory therapist and a member of the research team, spoke about the small dedicated team of interviewers who listened carefully and understood the issues from the patients’ and families’ point of view, enabling them to recruit a large number of patients to participate in the study for five years, to sometimes act as “informal advocates” for the patients, and to elicit unprecedented information from both patients and families.

Dr. Herridge echoed this, saying, that “The study gives these specific patients a profile, a voice about how tough it has been for them and their families. If we don’t pay attention to their needs and understand the consequences of the care we deliver in the ICU, we will not be able to modify any long-term outcomes. We will not be prepared for the older people with many more disabilities who will be coming to the ICU.”

She adds that another outcomes study is underway with her co-principal investigator Dr. Jill Cameron, Adjunct Scientist, Toronto Rehabilitation Institute and Assistant Professor, U of T. The “Towards RECOVER” program is a national, multi-centre outcomes and assessment follow-up of a large group of diverse patients, and their family caregivers, who had a prolonged stay in the ICU. Insights from these data will inform the development of a future family-centred, multidisciplinary rehabilitation program after critical illness.

The current study was supported by grants from the Canadian Intensive Care Foundation, the Physician’s Services Incorporated Foundation, and the Ontario Thoracic Society.