Patient survey

Evaluating the Effectiveness of Genetic Counseling Summary Letter

We recently sent a letter, specifically addressed to you, summarizing your child's visit to the genetics clinic at Children's Hospitals and Clinics of Minnesota. We want to evaluate this letter and will use your thoughts and ideas to improve our communication with families in the future. Please answer the following questions as best you can.

Study ID: ______

Initial call

Callback

  1. Who in your household read the letter? (check all that apply)

 No one Mom Dad Guardian

 Grandparent(s) Patient Siblings Other ______

  1. If you did not read the letter, why not? (check all that apply)

Too long

Language too complicated

Subject matter too complicated

Too much detail

Couldn’t deal with it now – will read it later

Other ______

  1. Do you plan to share your letter with others? (check all that apply)

Other extended-family members outside household

My child’s medical care providers outside Children’s

Medical providers of other family members

Various friends of my family or in my community

  1. Rate the format/style of the letter

4a. Word usage (check one) / Very hard to understand / Somewhat understandable / Easily understood
4b. Sentences (check one) / Much too long / Somewhat long / Just right
4c. Organization (check one) / Totally disorganized / Somewhat disorganized / Easy to follow
4d. Length of letter (check one) / Much too long / Somewhat long / Just right
  1. Rate the content/usefulness of the letter

5a. Too much medical/technical detail / Definitely / Probably / Not at all
5b. Too little medical/technical detail / Definitely / Probably / Not at all
5c. Because of this letter, my understanding of my child’s condition … / Is less clear / Has not changed / Is more clear
5d Will this letter help you explain things to family/friends? / Not at all / Probably / Definitely
5e Did the letter summarize the counseling meeting? / A lot of information was missing / Some information was missing / Completely summarized the meeting
  1. Rate your emotional response to this letter

Feelings / Increased / No change / Decreased
6a. Anxiety about my child’s future /  /  / 
6b. Depression/sadness /  /  / 
6c. Fear /  /  / 
6d. My ability to cope with my feelings /  /  / 
6e. Confidence that I can care for my child /  /  / 
  1. Overall, how satisfied were you with this letter.

Very DissatisfiedVery Satisfied

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  1. Suggestions for improving this letter: (feel free to use as much space as necessary)
  1. Overall, how satisfied were you with the genetic counseling session.

Very DissatisfiedVery Satisfied

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  1. Comments about the genetic counseling session.

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