Reporting Standards for Aphasia Research.

The researchers wanted to create an agreed list of important information to describe people with aphasia in research.

• This was a consensus study.
• The researchers asked experts to discuss and vote until they agreed.
• They used a special method called an "e-Delphi exercise". 
• Experts answered questions online over several rounds.

The experts agreed that 14 pieces of information should always be reported about people in aphasia studies:

About people with aphasia:

1. Age
2. Years of education
3. Biological sex
4. Language used in treatment/testing
5. Primary language
6. All languages they use
7. History of conditions affecting communication or thinking
8. History of previous strokes
9. Which side of the brain was damaged
10. Time since aphasia began
11. Other conditions from the stroke

About communication partners (family/carers):

1. Age
2. Biological sex
3. Relationship to the person with aphasia

Many research studies about aphasia don't include enough information about the people who participated. This makes it hard to:

• Compare different studies
• Repeat studies to check if they work
• Use research findings to help real patients in hospitals and clinics

When studies don't describe participants well, it wastes time and money and makes it harder for speech pathologists to know which treatments will work best for their patients.

If you have aphasia or care for someone with aphasia, this research helps ensure that future studies provide enough information to:

• Help therapists recommend the right treatment for you
• Compare your situation to people in research studies
• Know which treatments are most likely to work for someone like you

For researchers, it means all aphasia studies should now include these 14 details as a minimum standard.

The study had two main parts:

Three rounds of online surveys where experts suggested ideas and voted on them

A final meeting where experts discussed the results and made final decisions

In Round 1, 156 experts answered questions.

In Rounds 2 and 3, experts rated items as essential, important, or not important.

Finally, 19 experts met online to make final decisions.

This study didn't test a treatment.

Instead, it created guidelines for what information should be included in research reports.

These guidelines are called the "DESCRIBE" checklist and can be used by researchers when writing about their studies.

Aphasia is a language problem that affects up to 38% of stroke survivors.

Every person with aphasia is different, making it hard to know which treatments work best for which people.

Past studies from 1983, 2003, and recent years have shown that researchers often did not include important information about study participants, making studies less useful.

There were no risks related to this research.

The researchers invited three types of experts:

1. Researchers who had published aphasia studies
2. Clinicians who work with people with aphasia
3. Journal editors who decide what gets published in medical journals

All participants needed to speak English and work internationally.

• 156 people participated in Round 1
• 87% were female, 13% were male
• Most were speech therapists (85%)
• They came from 32 different countries (mostly Australia, UK, and USA)
• 69% were researchers, 60% were clinicians, and 13% were journal editors

To gain agreement from a range of experts.

The study received ethics approval in 2019, data collection happened in 2020, and the article was published in 2023.

• The study was international, with participants from 32 countries.
• The research team was based in Australia (University of Queensland) and Scotland (Glasgow Caledonian University).

The lead researcher received funding from the National Health and Medical Research Council in Australia

The Scottish team received funding from the Chief Scientist Office in Scotland

The Collaboration of Aphasia Trialists also provided support

The researchers identified some limitations:

1. Only people who could participate in English were included - other perspectives might have been missed
2. Most participants were researchers rather than therapists who work directly with patients
3. These standards might need updating in the future as research methods change

Yes, this research is trustworthy because:

• It used a well-established method (Delphi) for getting expert agreement
• It included many experts (156) from 32 countries
• Multiple researchers checked the work
• The process was transparent with clear voting rules
• It was published in a peer-reviewed journal
• It received ethics approval from a university committee

• Researchers who study aphasia should use these 14 standards when reporting information about their study participants.
• The standards should be reviewed and updated regularly to keep them current.

https://www.aphasiatrials.org/describe/