TABLE 3.
Quotes From Consensus Meeting Recordings
| Outcome | Topic | Example Quote |
|---|---|---|
| Delirium occurrence | Frequency | “Doing it per shift makes trial very hard from research staff perspective (night cover)—either daily or rely on bedside nurse assessment.” Nurse researcher |
| Start and finish of data collection | “Need to assess from admission to pick up when it occurs” Survivor | |
| “Should be every nurse shift routinely, and more when patient seems delirious” Physician researcher | ||
| “Disconnect between idea of measuring outcome before the start of a trial.” Physician researcher | ||
| “Measurement of occurrence depends on the intervention” Physician researcher | ||
| Delirium severity | Definition | “Severity is very subjective, very distressing vs mildly distressing” Survivor |
| “Severity equates with frightening.” Survivor | ||
| “Two ways of measuring, one observing the patient while they are having an episode of delirium and second and more valid way interrogating the patient after they are ‘awake’ about the severity of the incident and how it has affected them.” Survivor | ||
| Confusion Assessment Method-ICU-7 | “Cautious about recommending a tool with limited validation. If recommended it will be used to the exclusion of other instruments being described.” Physician researcher | |
| Future research | “Every study should do something on severity so we can learn more as we don’t know or understand it” Nurse researcher | |
| “I think we should suggest exploring delirium severity but without a recommended tool.” Nurse researcher | ||
| “What is more important a high severity score for one day with no impact on long term outcomes or patient delirious for 7–8 days with long term impact?” Physician researcher | ||
| Time to resolution | Timing of data collection | “I couldn’t put my finger on this is the end of my delirium, it was certainly quite a while after I got back home.” Survivor |
| “It doesn’t stop, it fades with time. When I got back home things became real to me and the haze clears.” Survivor | ||
| “If you finish time to resolution on discharge from ICU/hospital and patient still delirious then you are not measuring time to resolution.” Nurse researcher | ||
| Future research | “Look at ventilation where we use 48 hours at success in ventilation. We’re not there yet in delirium, we don’t have data that teaches us this or understand it. When has an episode resolved is beyond what we understand at this point.” Physician researcher | |
| Mortality | Timing of endpoint data collection | “Most hospital administration collects data for 28 or 30 days” Physician researcher |
| “60 days arbitrary – at 3 months recovery important question is ‘what it life like? For acute outcome ‘did you make it to one month alive?’” Nurse researcher | ||
| Health-related quality of life | Timing of data collection | “Research challenges of collecting outcomes push the outcome if you can.” Physician researcher |
| “Personally took me 6 months before brain switched on, I was mentally sluggish” Survivor | ||
| “Shorter one would be easier if powers of concentration are weak” Survivor | ||
| Emotional distress | Acute emotional distress | “IPAT would be useful but would need more questions and time to talk to the patient, has to have time to listen to the answers to get accurate feedback.” Survivor |
| Depression | “HADs does not follow the DSM criteria for these conditions. It does not even include one of the 2 cardinal symptoms of depression, which is depressed mood. I think it is convenient because it combines anxiety and depression. You are supposed to pay for it as it is not publicly available. I would not agree that it is a valid tool to assess clinical symptoms of anxiety and depression because it does not align with DSM criteria for either of these conditions.” Physician researcher | |
| Post-traumatic stress disorder | “IES-R does not diagnostic of PTSD but ok to use as long as you know what you are getting from it and we are looking at emotional distress.” Physician researcher | |
| Cognition | Recommendation to use Montreal Cognitive Assessment blind | “MoCA blind is not enough, not adequate and not sensitive however you do not want to miss impairment at the level the MoCA blind picks up.” Physician researcher |
| “For repeated measurements I’m less concerned with when how many times and when but more interested in doing it more than once, they are not static problems because of the trajectory, some may plateau, rise or decline.” Physician researcher |