Diaries share, and help resolve, secrets of the ICU


It sounds almost too simple to be true. What if the chance of an intensive care patient developing post-traumatic stress disorder (which a growing body of research has shown to be a significant risk) could be reduced with just a pen and a camera?

That's effectively what a recent European randomized controlled trial of 352 patients found. While the patients were in the ICU, hospital staff (including physicians and nurses) and family members kept a daily diary, including photographs, that described all aspects of the patient's hospital stay, from medical events like an extubation to friends and family who visited.

Photo courtesy of Richard D Griffiths, MD
Photo courtesy of Richard D. Griffiths, MD.

A month after discharge, half of the patients were invited to receive a copy of their diary, with an explanation by a nurse or physician. At three months after discharge, all patients were assessed for post-traumatic stress disorder (PTSD). Only 5% of the patients who had received their diaries had developed new cases of PTSD, compared to 13% of controls. After the PTSD assessment, the controls were also provided with their diaries.

Study authors Christina Jones, PhD, Richard D. Griffiths, MD, and colleagues concluded that the diaries were effective in aiding the psychological recovery of ICU patients and reducing PTSD incidence, and their results were published in Critical Care in September 2010. Dr. Griffiths, professor of medicine at the University of Liverpool, recently spoke with ACP Hospitalist about the success of the project and its potential application in other intensive care units.

Q: What's the typical content of an ICU diary?

A: It is a lay record of events, progress and news while in ICU. It is started by the nurses with a description in lay terms of why the patient was admitted and what is happening. A photo taken early often needs explaining—what all the tubes and machines are, for instance. Essentially it is what the nurse explains to the relatives and would have explained, if possible, to the patient.

Later on it contains events, news, comments—depends on what the nurse or the relatives or others wish to write. It is part of the therapy to engage the diary writing and its ownership with the relatives so they feel they also contribute to the record, e.g., watched Liverpool beat Manchester United yesterday. Some close partners do the most writing while others leave it to the nurses.

Q: How much time does the diary-keeping take?

A: It does not take very long except at the beginning. On long-stay patients, it may simply be something interesting that happened, e.g., had a tracheostomy or was sat up today.

Q: What's been the response by nurses to this assignment?

A: This has changed and depends on the nurse and the understanding of its purpose. The biggest problem was the fear of the legal status and what might be written. Once we pointed out that it has the same legal status as any medical or nursing notes and that honesty and real-time records are best, this fear went. If things go wrong, having the diary does not make matters worse.

Q: How did the results of the study compare to your expectations?

A: We formally tested the diary because observation in an earlier study had suggested they might be having an influence and needed to be tested formally in a randomized study. Clinical feedback from relatives also suggested they found it of benefit.

Q: If one were to use the diaries in practice, should particular patient populations be targeted?

A: We and many units in Europe use the diaries already in practice for some years, but this is the first time they have been rigorously tested to show a specific benefit apart from simple patient appreciation. The approach is targeted to those who seem likely to have a prolonged stay, as it is doubtful the diaries would be of benefit for the majority of patients who only stay a few days.

Q: Are there any risks to using the diaries?

A: None that have arisen. One must have a system that ensures confidentiality and consent and security of the document. We keep ours for more than a year because of the few patients who decline taking the diary. Some have returned on the anniversary seeking the diary.

Q: Your study provided patients with the diaries at one month. Is that the ideal interval?

A: We used one month for the purpose of testing its prevention of PTSD. Leaving it too late will allow PTSD to become established. In practical terms this is often about the right time but it depends on the patient's wishes: some earlier, some later.

Q: In the study, most diaries were provided in a face-to-face meeting between the patient and a research nurse or doctor. Would it be possible to get the benefits of the diaries without the extended follow-up—for example, by providing them to caregivers at discharge?

A: Yes, but a diary is only part of rehabilitation for these patients and leaving them with only the diary is simply not enough.

Q: Any other advice for physicians interested in this intervention?

A: It is simple but highly effective and treats not only the patient but also the symptoms in the relatives. We currently have a paper in preparation describing the benefits observed in a small group of the relatives involved in this study.