THREAD

Hey #ICU #CriticalCare #QoL folks

Want to take a quick break from COVID19 research?

Here's a tour of the new @AnnalsATS I&P piece by me, Michael Hurley, @IanOppenheim, @DrMeganHoseyPhD, @AnnEkedahl

https://bit.ly/3dPdny1 

Recent systematic reviews of services & interventions to improve Quality of Life (QoL) for ICU survivors have been pretty dismal. So we decided to go back to the drawing board and review some fundamentals. #ICU

Definition 1:
@WHO defines QoL as:
“an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns.”

@WHO’s International Classification of Functioning, Disability, & Health framework is a nice tool for thinking about where QoL comes from.

There’s also a framework by Wilson and Clearly describing theoretical determinants of QoL.

All of these theories assume that an individual’s QoL is determined primarily by their ability to perform valued tasks independently.

But this assumption needs to be tested.

A study of >1,400 ICU survivors 1 year after discharge found only mental health, not physical or cognitive functioning, were associated with whether survivors rated their current health as acceptable.

Def 2:
Health Related Quality of Life (HRQoL) is slightly different from QoL.
@ISOQOL - The In'ternational Society for QoL Research – defines HRQoL as assessing: “people’s level of ability, daily functioning, and ability to experience a fulfilling life." https://bit.ly/39B7hhp 

Think about that. By definition, QoL is an individual’s perception of their own life. It’s entirely subjective. But HRQoL is about ability and daily functioning – those are observable by a 3rd party. HRQoL is similar to Participation Restriction in the ICF framework (below).

Provocation #1:
When studying long-term outcomes of critical illness think carefully about whether you’re measuring QoL or HRQoL. Don’t treat these 2 terms as interchangeable.
Short version:
HRQoL = “Can you do X?”
QoL = “Do you care?”

Example:
The SF-36 physical function domain asks 10 questions about a person's ability to walk, climb stairs, bath, carry groceries, and work.

These are questions about participation restriction - not a measure of QoL.

Sacrilege right? Calm yourself.

Let us be very clear:

We strongly advocate using SF-36 and EQ-5D in studies of ICU survivorship. They are EXCELLENT measures of HRQoL.

They are part of the Core Outcome Set for studying long-term outcomes of ARF!

They have fantastic psychometric properties.

We LIKE them.

But, they don’t really measure QoL.

To measure QoL, we need to know whether people care about their abilities.

Consider the @WHO’s Quality of Life – BREF instrument (WHOQOL-BREF). https://bit.ly/2UQuGWM 

It asks questions like:

Provocation #2:

Maybe 1 reason interventions are “failing” is because many ICU survivors adapt to new impairments and report improvements in QoL which are not explained by changes in their physical or cognitive function. This phenomenon is called response shift.

Response shift occurs in many patients with stroke, spinal cord injury, cancer, multiple sclerosis, and inflammatory bowel disease.

Why not ICU survivors too?

Here’s an example of response shift in a survivor of acute critical illness.

ICU survivors who experienced positive response shift are like patients with pre-existing immunity in a trial of disease prevention. Enrolling these immune individuals, who will adapt & thrive regardless of interventions, decreases a trial’s power to detect existing effects.

Provocation #3:
Most interventions to improve QoL for ICU survivors have focused on eliminating participation restrictions through PT, OT, and social support.

There's also another lever we can try pushing: Expectations

Expectancy-discrepancy theory and assimilation-contrast theory are fancy ways of talking about how our expectations relate to satisfaction in marketing research. They’ve held up pretty well when applied to surgical procedures and similar high-stakes healthcare decisions.

Basically, these theories propose that people are satisfied when outcomes meet or exceed their expectations and dissatisfied when expectations go unfulfilled.
Reality – expectations = satisfaction --> QoL

If people assigned to post-ICU interventions have greater expectations for functional recovery, that might make them less satisfied at follow-up. Providing standard info about recovery to all enrolled patients might help create more comparable intervention & control groups.

There are more important reasons to set appropriate expectations than study design though.

Discussing possible outcomes is an essential part of ensuring patient safety post discharge.

Waiting for symptoms of depression, anxiety, and PTS puts survivors at risk.

Patients and their families leaving the hospital need to be debriefed and prepared.

As Michael put it: “Unprepared survivors may suffer in silence if they’ve absorbed the message that feeling physically better should be ‘enough’."

We are NOT advocating discouraging patients.

We recommend disclosing and normalizing that previously healthy patients *may* experience new long-lasting impairments through no fault of their own, regardless of participation in rehabilitation.

This does NOT mean that patients are helpless. Far from it.

They have significant control over how they respond to the uncertainty of their recovery.

In short, we recommend honesty.

Fostering realistic expectations may seem counterintuitive. The Power of Positive Thinking has preached unrelenting optimism and sold well in America for >6 decades.

But honesty & bravely facing uncertainty are inexpensive to try, and we can't afford to keep failing survivors.