Exome sequencing disclosures in pediatric cancer care: Patterns of communication among oncologists, genetic counselors, and parents

PATIENT EDUCATION AND COUNSELING

卷:102

Article

Scollon, Sarah¹  Majumder, Mary A.²  Bergstrom, Katie¹  Wang, Tao³  McGuire, Amy L.²  Robinson, Jill O.²  Gutierrez, Amanda M.²  Lee, Caroline H.⁴  Hilsenbeck, Susan G.³  Plon, Sharon E.^1,3  Parsons, D. Williams¹  Street, Richard L., Jr.^5,6,7 

[1] Baylor Coll Med, Dept Pediat, 1 Baylor Plaza, Houston, TX 77030 USA

[2] Baylor Coll Med, Ctr Med Eth & Hlth Policy, 1 Baylor Plaza,Suite 310D, Houston, DC 77030 USA

[3] Baylor Coll Med, Dan I Duncan Canc Ctr, 6620 Main St, Houston, TX 77030 USA

[4] Rice Univ, 6100 Main St, Houston, TX 77005 USA

[5] Baylor Coll Med, Dept Med, 6620 Main St, Houston, TX 77030 USA

[6] Texas A&M Univ, Dept Commun, TAMU 4234, College Stn, TX 77843 USA

[7] Michael E DeBakey VA Med Ctr, Ctr Innovat Healthcare Qual Effectiveness Ea Safe, 2450 Holcombe Blvd,Suite 01Y, Houston, TX 77021 USA

关键词: Clinician-patient communication;    Return of results;    Exome sequencing;    Genetic counseling;   

DOI  :  10.1016/j.pec.2018.11.007

来源: Elsevier

【 摘 要 】

Objective: To examine communication patterns and behaviors during disclosure of exome sequencing (ES) results to parents of pediatric cancer patients, and describe common themes in parental communication. Methods: Using mixed methods, we analyzed transcripts of sessions where parents of pediatric cancer patients received ES results from an oncologist and genetic counselor. Seventy-six transcripts were analyzed for frequency of clinician information-giving, partnering-supportive talk, and active parent participation. A subset of 40 transcripts were analyzed using thematic content analysis. Results: Disclosures consisted mostly of clinician talk (84% of total talk), which was focused on providing information (62% of clinicians' utterances) with occasional partnering-supportive talk (7% of clinicians' utterances). Most parents assumed a passive, listening role (16% of total talk). Themes in parental communication included expressing relief and the significance of an answer, concern about sharing results and responsibility for inheritance, and seeking clarification of health implications of results. Conclusion: Our finding of low levels of active parent participation during ES disclosures highlights the need to improve patient/parent engagement and understanding in a genetic setting. Practice implications: Clinician communication strategies that could encourage parent participation and understanding include checking for parent understanding, partnership-building, and tailoring ES discussions to address parent concerns and preferences. (C) 2018 Elsevier B.V. All rights reserved.

【 授权许可】

Free