Methods

Survey Development

The Working Group participated in a modified Delphi method over a period of 18 months using Abraham Maslow's Hierarchy of Needs as a framework. First, relevant previously published indicators were identified. For each domain, approximately 10–20 previously published survey items were initially proposed to the Working Group. Each Working Group member then assessed each survey item with the following questions:

  1. Setting aside the specific question wording for this indicator, would this subject matter/content be useful to know?
  2. How easy would it be for your Down syndrome organization to answer this question on behalf of your population?
  3. What wording change would have made this question easier to answer?

The Working Group's evaluation of each survey item was then discussed during a live video conference call. Participants were also given the opportunity to suggest/discuss additional survey items. During 14 meetings from 2018–2020, we considered 140 possible items, which we reduced to the 61 in the final DS-4S.

Inclusion Criteria

  1. The organization had a holistic focus on the lives of people with DS—i.e., not limited to specific issues, such as a dance or therapy group.
  2. At least 50% of the organization’s members either have DS or are family members of people with DS.

Statistical Analysis

To generate the domain scores and an overall score for each organization, we performed factor analysis:

  1. Factor analysis was performed on the indicators within each domain to obtain a "factor loading"
  2. Each indicator was normalized by creating a z-score (mean = 0 and standard deviation = 1)
  3. The domain score was generated for each organization by multiplying the z-score of the indicator with the corresponding factor loading of the indicator and then summing across all the indicators in the domain
  4. Each region's domain score was generated by taking the average of the domain scores across all organizations within the region
  5. Each region's overall score was generated by summing across all the domain scores

Grand Rounds

Massachusetts General Hospital (March 21, 2024)