Engagement to Identify Health Priorities of People With Intellectual and/or Developmental Disability.
Teal W Benevides, Hoangmai H Pham, May-Lynn Andresen and 9 others
Nine health priorities for people with IDD were identified over two years with 58 partners from four groups.
They span participation, emotional and physical health, sexuality, family caregiver support, and system-level supports. Graphic illustrations were the method partners rated most helpful.
Key findings
1Nine primary health outcomes were identified as critical to positive health for people with IDD: making healthy choices, emotional/mental health, physical health and pain, sexuality and parenting, doing the things one loves or needs to do, family caregiver wellness, workforce development, system supports, and payer/regulator priorities.
2100% of partners who responded to surveys said visual tools and graphic illustrations supported their engagement and understanding. Drawings were the most frequently mentioned thing partners liked about the process.
343.1% of the 58 initial partners remained engaged in subsequent project activities two years later. At project close, 42 partners signed a Memorandum of Understanding to participate in future activities.
Still to come
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The authors state the project was not designed as a research study, had no sampling plan, and did not follow a traditional qualitative inquiry protocol. Engagement activities were not methodologically fixed; approaches evolved based on how meetings were going, so the process cannot be easily replicated step-for-step. The authors acknowledge they cannot quantify the time spent ensuring each partner's input was reflected in each iteration. The clinician satisfaction survey failed to launch due to a technical error, so no clinician experience data are reported. Group sizes were small (13 clinicians, 13 payers/regulators), and 5 of 16 registered clinicians dropped out before attending. The project was U.S.-specific and funded by PCORI and Arnold Ventures, which may shape which priorities surfaced.
Declared interests
Funded by the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASC-IDD-00241) to Augusta University, and by Arnold Ventures to the Institute for Exceptional Care. The authors state the work is solely the responsibility of the project leads and does not necessarily represent PCORI's views. The authors declared no potential conflicts of interest.
The easy way to misread this
Do not read the nine identified priorities as evidence that any specific intervention improves outcomes for people with IDD. These are topics that stakeholders said matter to them, flagged for future research. The high satisfaction scores describe how well the engagement process ran, not whether any treatment or programme produced a health benefit.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →