The Long and Short of Genetic Counseling Summary Letters: A Case-control Study

Area of Science:

• Medical Genetics
• Patient Communication
• Health Literacy

Background:

• Genetic counseling summary letters aim to reinforce information but patient responses are understudied.
• Effectiveness of different genetic counseling letter formats on patient comprehension and emotional response is not well understood.

Purpose of the Study:

• To assess the effectiveness of two genetic counseling summary letter formats: a traditional narrative versus a concise, lay-term version.
• To evaluate patient/family satisfaction, usefulness, and emotional reactions to different letter formats.

Main Methods:

• A case-control study involving parents of children with a new genetic diagnosis.
• Control group (n=85) received a 4-5 page narrative letter.
• Case group (n=64) received a 1.5 page concise letter using simple language and bullet points.

Main Results:

• Parents receiving the concise letter rated it significantly higher (p=0.023), especially regarding emotional response (anxiety, depression, coping).
• The concise letter group also reported higher satisfaction with the genetic counseling session (p=0.039).
• Concise letters were found to be more effective across diverse educational backgrounds, unlike longer, detailed letters.

Conclusions:

• A short, concise genetic counseling summary letter format is preferred by parents and associated with a more positive emotional adaptation.
• Simplified communication in genetic counseling summary letters enhances understanding and emotional support for families.
• Training genetic counselors in medical and educational writing can improve patient communication effectiveness.