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Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
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Co-Producing a Patient Reported Experience Measure (PREM) With and for People With Intellectual Disability.

Bronwyn Newman1, Ling Wu2, Laurel Mimmo1,3

  • 1Centre for Health Systems and Safety Research, Australian Institute of Health Innovation, Macquarie University, Sydney, Australia.

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Summary
This summary is machine-generated.

This study developed the Listen to Me Patient Reported Experience Measures (PREMs) for people with intellectual disability. These accessible tools capture patient experiences to improve healthcare access and quality for this population.

Keywords:
accessible informationequityinclusive researchintellectual disabilitypatient reported measures

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Area of Science:

  • Healthcare accessibility research
  • Patient experience measurement
  • Intellectual disability healthcare

Background:

  • Patient Reported Experience Measures (PREMs) are crucial for healthcare quality but underutilized for individuals with intellectual disabilities.
  • This population often faces significant barriers to healthcare access and experiences poorer outcomes.
  • Inclusive research is vital to address these disparities.

Purpose of the Study:

  • To collaboratively develop a Patient Reported Experience Measure (PREM) specifically designed for people with intellectual disabilities.
  • To ensure the tool is accessible and captures the authentic experiences of this demographic.

Main Methods:

  • Co-production through hybrid workshops involving individuals with intellectual disabilities, support persons, researchers, and healthcare professionals.
  • Inclusive data collection methods were employed throughout a 3-year research project.
  • Preliminary user testing utilized semi-structured interviews with a 'think aloud' approach.

Main Results:

  • The co-production process engaged diverse stakeholders, including individuals with intellectual disabilities and their support networks.
  • The resulting 9-item Listen to Me PREMs are digitally-enabled with features like large fonts and audio options.
  • Preliminary testing involved 11 individuals with intellectual disabilities, accommodating various communication needs.

Conclusions:

  • The Listen to Me PREMs offer an innovative, accessible method for directly capturing patient experiences from individuals with intellectual disabilities.
  • Implementing these measures empowers health services to identify areas for improvement in healthcare delivery.
  • This can lead to enhanced access, quality, and outcomes for consumers with significant healthcare needs.