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Haga SB, Mills R, Pollak KI, et al. Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding. Genome Med. 2014;6(7):58doi: 10.1186/s13073-014-0058-6.
Haga, S. B., Mills, R., Pollak, K. I., Rehder, C., Buchanan, A. H., Lipkus, I. M., Crow, J. H., & Datto, M. (2014). Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding. Genome medicine, 6(7), 58. https://doi.org/10.1186/s13073-014-0058-6
Haga, Susanne B, et al. "Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding." Genome medicine vol. 6,7 (2014): 58. doi: https://doi.org/10.1186/s13073-014-0058-6
Haga SB, Mills R, Pollak KI, Rehder C, Buchanan AH, Lipkus IM, Crow JH, Datto M. Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding. Genome Med. 2014 Jul 31;6(7):58. doi: 10.1186/s13073-014-0058-6. eCollection 2014. PMID: 25473429; PMCID: PMC4254435.
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Genome Med. 2014 Jul 31;6(7):58. doi: 10.1186/s13073-014-0058-6. eCollection 2014.

Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding.

Genome medicine

Susanne B Haga, Rachel Mills, Kathryn I Pollak, Catherine Rehder, Adam H Buchanan, Isaac M Lipkus, Jennifer H Crow, Michael Datto

Affiliations

  1. Center for Applied Genomics, Duke University School of Medicine Center for Personalized and Precision Medicine, Duke University Health System, 304 Research Drive, Durham, NC 27708 USA.
  2. Cancer Control and Population Sciences, Duke Cancer Institute, 2424 Erwin Rd, Durham, NC 27705 USA ; Community and Family Medicine, Duke University Medical Center, 318 Hanes House, DUMC 2914, Durham, NC 27710 USA.
  3. Duke University Health System Clinical Laboratories, 4425 Ben Franklin Blvd, Durham, NC 27704 USA.
  4. Cancer Control and Population Sciences, Duke Cancer Institute, 2424 Erwin Rd, Durham, NC 27705 USA.
  5. Cancer Control and Population Sciences, Duke Cancer Institute, 2424 Erwin Rd, Durham, NC 27705 USA ; Duke School of Nursing, 307 Trent Dr, Durham, NC 27710 USA.

PMID: 25473429 PMCID: PMC4254435 DOI: 10.1186/s13073-014-0058-6

Abstract

With the emergence of electronic medical records and patient portals, patients are increasingly able to access their health records, including laboratory reports. However, laboratory reports are usually written for clinicians rather than patients, who may not understand much of the information in the report. While several professional guidelines define the content of test reports, there are no guidelines to inform the development of a patient-friendly laboratory report. In this Opinion, we consider patient barriers to comprehension of lab results and suggest several options to reformat the lab report to promote understanding of test results and their significance to patient care, and to reduce patient anxiety and confusion. In particular, patients' health literacy, genetic literacy, e-health literacy and risk perception may influence their overall understanding of lab results and affect patient care. We propose four options to reformat lab reports: 1) inclusion of an interpretive summary section, 2) a summary letter to accompany the lab report, 3) development of a patient user guide to be provided with the report, and 4) a completely revised patient-friendly report. The complexity of genetic and genomic test reports poses a major challenge to patient understanding that warrants the development of a report more appropriate for patients.

References

  1. Fed Regist. 2012 Sep 4;77(171):54163-292 - PubMed
  2. Patient Educ Couns. 1999 Nov;38(3):175-83 - PubMed
  3. Patient Educ Couns. 2004 Dec;55(3):339-44 - PubMed
  4. Eur J Hum Genet. 2007 Oct;15(10):1012-22 - PubMed
  5. Am J Med Genet. 2001 Sep 15;103(1):16-23 - PubMed
  6. Am J Med Genet C Semin Med Genet. 2014 Mar;166C(1):45-55 - PubMed
  7. Genome Biol. 2014 Mar 25;15(3):R53 - PubMed
  8. J Genet Couns. 2007 Aug;16(4):419-32 - PubMed
  9. Am J Hum Genet. 2010 May 14;86(5):749-64 - PubMed
  10. Pharmacoepidemiol Drug Saf. 2013 May;22(5):447-58 - PubMed
  11. J Med Internet Res. 2013 Mar 27;15(3):e65 - PubMed
  12. Curr Pharm Biotechnol. 2011 Feb 1;12(2):293-305 - PubMed
  13. Fed Regist. 2014 Feb 6;79(25):7289-316 - PubMed
  14. Clin Exp Dermatol. 2004 Jan;29(1):81-6 - PubMed
  15. JAMA. 2010 Oct 27;304(16):1812-20 - PubMed
  16. JAMA. 2001 May 23-30;285(20):2612-21 - PubMed
  17. Fam Community Health. 2001 Oct;24(3):13-26 - PubMed
  18. Diabetes Care. 2009 Feb;32(2):234-9 - PubMed
  19. Ann Intern Med. 2008 May 20;148(10):737-46 - PubMed
  20. JAMA. 2014 Jul;312(2):127-8 - PubMed
  21. J Genet Couns. 2012 Jun;21(3):402-412 - PubMed
  22. Patient Educ Couns. 2008 Oct;73(1):42-9 - PubMed
  23. Community Genet. 2005;8(3):161-72 - PubMed
  24. JAMA. 2002 May 22-29;287(20):2691-700 - PubMed
  25. BMJ. 2012 Feb 21;344:e686 - PubMed
  26. JAMA. 2008 Jun 25;299(24):2857-67 - PubMed
  27. J Am Dent Assoc. 2000 Jul;131(7):937-42 - PubMed
  28. Diabetes Care. 2009 Sep;32(9):1614-9 - PubMed
  29. Annu Rev Psychol. 1997;48:609-47 - PubMed
  30. MMWR Recomm Rep. 2009 Jun 12;58(RR-6):1-37; quiz CE-1-4 - PubMed
  31. Genet Test Mol Biomarkers. 2012 Jul;16(7):761-9 - PubMed
  32. J Clin Oncol. 2008 Apr 1;26(10 ):1626-34 - PubMed
  33. Consult Pharm. 2013 Sep;28(9):550-4 - PubMed
  34. AJR Am J Roentgenol. 2002 Feb;178(2):451-6 - PubMed
  35. Patient Educ Couns. 2006 Mar;60(3):286-93 - PubMed
  36. JAMA. 1999 Feb 10;281(6):552-7 - PubMed
  37. Ann Behav Med. 2004 Apr;27(2):125-30 - PubMed
  38. Br Med J (Clin Res Ed). 1986 Mar 1;292(6520):596-8 - PubMed
  39. Cancer Epidemiol Biomarkers Prev. 2004 Feb;13(2):171-80 - PubMed
  40. J Cyst Fibros. 2008 Nov;7(6):511-4 - PubMed
  41. Med Decis Making. 2012 Jul-Aug;32(4):545-53 - PubMed
  42. J Am Med Inform Assoc. 2004 Sep-Oct;11(5):410-7 - PubMed
  43. Otolaryngol Head Neck Surg. 2012 Sep;147(3):466-71 - PubMed
  44. J Health Commun. 2006 Sep;11(6):569-82 - PubMed
  45. J Behav Med. 2012 Jun;35(3):286-98 - PubMed
  46. Soc Sci Med. 2006 Mar;62(6):1360-8 - PubMed
  47. Ann Intern Med. 2012 Oct 2;157(7):461-70 - PubMed
  48. Cancer Control. 2009 Jan;16(1):70-8 - PubMed
  49. JAMA. 2004 Jul 28;292(4):442-52 - PubMed
  50. Arch Pathol Lab Med. 2007 Jun;131(6):852-63 - PubMed
  51. Jt Comm J Qual Patient Saf. 2012 Apr;38(4):168-76 - PubMed
  52. Disabil Rehabil. 2014;36(5):367-72 - PubMed
  53. Anticancer Res. 2010 May;30(5):1667-71 - PubMed
  54. J Am Med Inform Assoc. 2011 Jul-Aug;18(4):515-22 - PubMed
  55. Genet Med. 2006 Nov;8(11):688-96 - PubMed
  56. Patient Educ Couns. 2013 Feb;90(2):226-32 - PubMed
  57. BMC Health Serv Res. 2007 Jun 12;7:82 - PubMed
  58. Breast Cancer Res Treat. 2012 Jun;133(2):553-61 - PubMed
  59. J Med Internet Res. 2014 Mar 18;16(3):e80 - PubMed
  60. Med Decis Making. 2009 Mar-Apr;29(2):157-66 - PubMed
  61. Patient Couns Health Educ. 1980 1st Quart;2(1):1-5 - PubMed
  62. J Behav Med. 2006 Feb;29(1):37-49 - PubMed
  63. Patient Educ Couns. 2013 Aug;92(2):149-52 - PubMed
  64. Arch Pathol Lab Med. 2008 Jan;132(1):84-94 - PubMed
  65. Med Decis Making. 2012 Jul-Aug;32(4):606-15 - PubMed
  66. J Med Internet Res. 2006 Jun 16;8(2):e9 - PubMed
  67. Ann Oncol. 2004 May;15(5):726-32 - PubMed
  68. J Med Genet. 2001 Nov;38(11):787-92 - PubMed
  69. Am J Med Genet C Semin Med Genet. 2014 Mar;166C(1):85-92 - PubMed
  70. Genet Med. 2002 Sep-Oct;4(5):324-7 - PubMed
  71. J Mol Diagn. 2009 Mar;11(2):162-71 - PubMed
  72. Genet Med. 2013 Sep;15(9):733-47 - PubMed
  73. Arch Pathol Lab Med. 1997 Nov;121(11):1171-5 - PubMed
  74. J Med Internet Res. 2007 Feb 28;9(1):e4 - PubMed
  75. J Mol Diagn. 2008 Sep;10(5):459-68 - PubMed
  76. Stud Health Technol Inform. 2013;192:714-8 - PubMed
  77. PLoS One. 2013;8(1):e54729 - PubMed
  78. Genet Med. 2005 Jan;7(1):48-53 - PubMed
  79. Cancer Epidemiol Biomarkers Prev. 2007 Feb;16(2):249-55 - PubMed
  80. Am J Med Genet A. 2009 Feb 15;149A(4):819-30 - PubMed
  81. J Health Commun. 2002 Jul-Sep;7(4):325-40 - PubMed
  82. Br J Gen Pract. 1993 Feb;43(367 ):52-6 - PubMed
  83. AMIA Annu Symp Proc. 2007 Oct 11;:399-403 - PubMed
  84. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S7 - PubMed
  85. N Engl J Med. 1997 Mar 20;336(12):823-7 - PubMed
  86. J Genet Couns. 2002 Oct;11(5):399-418 - PubMed
  87. Clin Med (Lond). 2007 Oct;7(5):457-60 - PubMed
  88. J Natl Cancer Inst Monogr. 1999;(25):59-66 - PubMed
  89. J Pediatr Health Care. 2005 May-Jun;19(3):151-6 - PubMed
  90. Public Health Genomics. 2011;14(4-5):279-89 - PubMed
  91. J Genet Couns. 2014 Aug;23(4):496-505 - PubMed
  92. Arch Pathol Lab Med. 2004 Dec;128(12):1424-7 - PubMed
  93. Stud Health Technol Inform. 2011;169:38-42 - PubMed
  94. J Am Med Inform Assoc. 2010 Mar-Apr;17(2):203-11 - PubMed
  95. J Am Med Inform Assoc. 2006 Jan-Feb;13(1):24-9 - PubMed
  96. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6 - PubMed
  97. J Pathol Inform. 2012;3:26 - PubMed
  98. Ther Clin Risk Manag. 2005 Sep;1(3):189-99 - PubMed
  99. J Laryngol Otol. 2010 Mar;124(3):324-7 - PubMed
  100. Am J Med Genet A. 2003 Jun 15;119A(3):297-301 - PubMed
  101. Am J Med. 1995 Dec;99(6):590-6 - PubMed
  102. Med Decis Making. 2000 Apr-Jun;20(2):228-38 - PubMed
  103. Genet Med. 2005 Sep;7(7):501-8 - PubMed
  104. Cyberpsychol Behav. 2004 Dec;7(6):728-33 - PubMed
  105. J Am Med Inform Assoc. 2004 Nov-Dec;11(6):505-13 - PubMed
  106. Clin Leadersh Manag Rev. 2004 Jan-Feb;18(1):11-24 - PubMed
  107. J Am Med Inform Assoc. 2005 Mar-Apr;12(2):152-63 - PubMed
  108. J Genet Couns. 2004 Oct;13(5):403-24 - PubMed
  109. BMC Med. 2006 Jan 20;4:2 - PubMed
  110. Lancet. 2010 May 1;375(9725):1525-35 - PubMed
  111. Risk Anal. 2005 Apr;25(2):397-404 - PubMed
  112. Arch Intern Med. 2007 Nov 12;167(20):2233-9 - PubMed
  113. Genetics. 2008 Jan;178(1):15-22 - PubMed
  114. J Crohns Colitis. 2013 Dec;7(11):e543-50 - PubMed
  115. JAMA. 2014 Mar 12;311(10):1035-45 - PubMed
  116. Public Health Genomics. 2011;14(4-5):201-10 - PubMed
  117. AMIA Annu Symp Proc. 2005;:969 - PubMed

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