Table 8Parent Stakeholder Response to Different Conceptual Formats of the Prognostic Table (Aim 1 – Report Development)a,b

Evaluation concept sheetsAppreciatedNot appreciatedSuggestions
Concept 1
  • Gives ideas what to look for in the future
  • Timeframes very helpful
  • Would use as baseline reference
  • Monitoring recommendations
  • Everything on it is necessary
  • Can use with provider for discussion
  • Classifications: few, some, most
Use percentages
Concept 2
  • Findings ordered by likely possibility
  • Difficult to read
  • Must read every word to understand
  • Don't like anything about the concept
Perhaps separate into columns to make easier to read
Concept 3
  • Clearly divided into sections
  • Can scan quickly
  • Recommends specialists to see
  • Answers concern of where to go next
  • Provides accepted listing of special needs
  • Not color coded
  • Too much black text on white
Provide actual names of specialists in health care system
Concept 4
  • Very detailed and specific
  • More information is better
  • All the findings available, not just “important” ones
  • Allows for discussion of behavioral and physical findings
  • Medical terminology
Define all medical words and offer function to check off matching symptoms

aAdapted from Stuckey H, Williams JL, Fan AL, et al. Enhancing genomic laboratory reports from the patients' view: a qualitative analysis. Am J Med Genet A. 2015;167A(10):2238-2243 [PubMed: 26086630].

bCopies of the concept sheets are in the Appendix.

From: Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders

Cover of Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders
Evaluating the Impact of a User-Friendly Report of Genetic Testing Results for Parents of Children with Genetic Disorders [Internet].
Williams M, Williams J, Rahm A, et al.
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