Families hear the phrase all the time: “We're hoping for a good outcome.”
Of course we are.
But what exactly does “good outcome” mean? Well, it can mean something different to everyone. Each individual, family, clinician, and patient will have different definitions, values, and what matters most to that individual.
In HIE research, it may have a very specific statistical definition.
Understanding that difference can make research — and conversations about prognosis — much easier to have and interpret.
Scientists can't conduct a clinical trial using “doing well” as an outcome, they need something measurable.
Landmark HIE trials used outcomes such as death, cerebral palsy, cognitive scores and categories of moderate or severe disability.
For example, the school-age follow-up of the TOBY therapeutic hypothermia trial used survival with an IQ of 85 or higher as its primary outcome. The NICHD school-age follow-up used death or an IQ score below 70 as its primary endpoint and also examined disability, attention and executive function, and visuospatial function.
These definitions allow researchers to compare groups, but they shouldn't automatically become labels for children's lives. And, no patient-families or patient advocacy was involved in developing those endpoints and deciding what actually matters most to the HIE community.
You may also see HIE research describing an outcome such as: “Death or moderate/severe disability.”
This is called a composite outcome.
There are legitimate scientific reasons researchers use composite endpoints, particularly when studying serious outcomes that occur relatively infrequently and when comparing treatments across groups.
But there is a HUGE difference between moderate disability and death, and families should be able to have a breakout by agreed upon definitions of severity, and levels of disability, that helps actually understand the full spectrum of outcomes.
Likewise, surviving without moderate or severe disability does not necessarily mean surviving without any HIE-related impacts.
When families read a study, one of the most useful questions they can ask is: What exactly did the researchers count?
When we talk about neurodevelopment after HIE, we are talking about much more than whether a child walks, talks, or has cerebral palsy.
Neurodevelopment includes gross and fine motor skills, cognition, language and communication, learning, attention, memory, processing speed, executive functioning, visual and spatial processing, sensory processing, behavior, social-emotional development, and adaptive functioning in everyday life.
These abilities also develop on different timelines. Some can be assessed relatively well in infancy and toddlerhood, while others — particularly attention, executive functioning, complex learning, memory, processing speed, and higher-order social and behavioral skills — become much easier to evaluate as children reach school age and face increasingly complex demands.
This is one reason an early developmental assessment is an important snapshot, but cannot always tell us the full story of a child's neurodevelopment after HIE.
| Domain | What it includes / may look like |
|---|---|
| Gross motor | Sitting, walking, balance, gait, coordination, strength, mobility, cerebral palsy |
| Fine motor | Hand use, dexterity, handwriting, manipulating objects, bilateral coordination |
| Cognition | Reasoning, problem-solving, conceptual development, general intellectual functioning |
| Language & communication | Receptive and expressive language, speech, pragmatic/social communication, AAC use |
| Learning & academic achievement | Reading, writing, mathematics, acquisition and application of new information |
| Attention | Sustained, selective and divided attention; distractibility and attentional control |
| Executive functioning | Planning, organization, inhibition, cognitive flexibility, initiation, self-monitoring |
| Memory & learning | Working memory, short- and long-term memory, encoding, retrieval and new learning |
| Processing speed | Speed and efficiency of taking in, interpreting and responding to information |
| Visuospatial / visual-perceptual | Spatial reasoning, visual processing, visual-motor integration, recognizing/interpreting visual information |
| Sensory processing | Processing and responding to sensory input; sensory modulation and integration |
| Social-emotional development | Relationships, emotional development, social understanding, self-regulation |
| Behavioral functioning | Impulse control, behavioral regulation, adaptive responses, internalizing/externalizing behaviors |
| Adaptive functioning | Daily living skills, independence, self-care, communication and functioning in everyday environments |
Historically, some of the most visible HIE outcomes have been motor outcomes such as cerebral palsy, but children are more than their motor function, and there are multiple domains of neurodevelopment, and Quality of Life.
Outcomes that matter to families may also include:
Different families may also prioritize outcomes differently, and that's one reason co-production of research with patient and family involvement in research design is becoming standard.
There is another important reason to be thoughtful about words such as “good” and “bad.” One, disability has been a part of human existence since our beginning.
Children with disabilities are listening. So are their parents.
A child with cerebral palsy, epilepsy, cortical visual impairment, communication disability or medical complexity may need different levels of support. The same diagnoses on paper can look very different across children and the spectrum of impacts and outcomes.
Their family, and the child, still can and do experience love, joy, connection and a meaningful quality of life.
We can acknowledge the real challenges associated with disability without defining the child's life as a “bad outcome.”
That's not to say we won't strive for decreasing the impact of HIE: the vision of Hope for HIE is to decrease the incidence and impact of HIE.
It is to say we can hold two truths -- we strive for improved outcomes, and we hold truth to people with disabilities live meaningful lives.
Instead of simply asking: “Is this a good outcome?” we can ask:
Those questions tell us much more.
“Good outcome” may be convenient shorthand.
But families deserve the longer version.
Research outcomes are definitions created to answer particular scientific questions. They do not measure the value of a child's life, and they don't always capture every way HIE can affect development.
Visit our HIE Outcomes resource to learn more about how HIE outcomes are measured and what those statistics can — and cannot — tell families.
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