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Katapodi MC, Jung M, Schafenacker AM, et al. Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study. JMIR Cancer. 2018;4(1):e7doi: 10.2196/cancer.9210.
Katapodi, M. C., Jung, M., Schafenacker, A. M., Milliron, K. J., Mendelsohn-Victor, K. E., Merajver, S. D., & Northouse, L. L. (2018). Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study. JMIR cancer, 4(1), e7. https://doi.org/10.2196/cancer.9210
Katapodi, Maria C, et al. "Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study." JMIR cancer vol. 4,1 (2018): e7. doi: https://doi.org/10.2196/cancer.9210
Katapodi MC, Jung M, Schafenacker AM, Milliron KJ, Mendelsohn-Victor KE, Merajver SD, Northouse LL. Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study. JMIR Cancer. 2018 Apr 13;4(1):e7. doi: 10.2196/cancer.9210. PMID: 29653920; PMCID: PMC5924376.
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JMIR Cancer. 2018 Apr 13;4(1):e7. doi: 10.2196/cancer.9210.

Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study.

JMIR cancer

Maria C Katapodi, Miyeon Jung, Ann M Schafenacker, Kara J Milliron, Kari E Mendelsohn-Victor, Sofia D Merajver, Laurel L Northouse

Affiliations

  1. Department of Public Health, Faculty of Medicine, University of Basel, Basel, Switzerland.
  2. School of Nursing, University of Michigan, Ann Arbor, MI, United States.
  3. School of Nursing, Indiana University, Indianapolis, IN, United States.
  4. Comprehensive Cancer Center, University of Michigan, Ann Arbor, MI, United States.
  5. Medical School, University of Michigan, Ann Arbor, MI, United States.
  6. School of Public Health, University of Michigan, Ann Arbor, MI, United States.

PMID: 29653920 PMCID: PMC5924376 DOI: 10.2196/cancer.9210

Abstract

BACKGROUND: Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer.

OBJECTIVE: The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making.

METHODS: We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability.

RESULTS: The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master's prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups.

CONCLUSIONS: Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented.

TRIAL REGISTRATION: ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv).

©Maria C Katapodi, Miyeon Jung, Ann M Schafenacker, Kara J Milliron, Kari E Mendelsohn-Victor, Sofia D Merajver, Laurel L Northouse. Originally published in JMIR Cancer (http://cancer.jmir.org), 13.04.2018.

Keywords: BRCA families; Web-based intervention study; communication and coping; family-based intervention study; genetic testing; patient decision-aid; psycho-educational and skills-building intervention study

References

  1. J Pers Soc Psychol. 1986 May;50(5):992-1003 - PubMed
  2. Am J Med Genet C Semin Med Genet. 2003 May 15;119C(1):35-44 - PubMed
  3. BMJ Qual Saf. 2017 Dec 21;:null - PubMed
  4. Oncol Nurs Forum. 2009 May;36(3):306-14 - PubMed
  5. BMC Med Inform Decis Mak. 2014 Dec 12;14:112 - PubMed
  6. Cancer Invest. 2003;21(4):588-623 - PubMed
  7. Cochrane Database Syst Rev. 2017 Apr 12;4:CD001431 - PubMed
  8. Health Psychol. 2005 Jul;24(4S):S78-84 - PubMed
  9. Annu Rev Clin Psychol. 2007;3:53-76 - PubMed
  10. Semin Oncol Nurs. 2015 May;31(2):100-7 - PubMed
  11. Science. 2014 Mar 28;343(6178):1466-70 - PubMed
  12. Am J Prev Med. 2016 Oct;51(4):427-36 - PubMed
  13. Fam Cancer. 2003;2(3-4):159-68 - PubMed
  14. Am J Obstet Gynecol. 2015 Aug;213(2):161-5 - PubMed
  15. CA Cancer J Clin. 2010 Sep-Oct;60(5):317-39 - PubMed
  16. Int J Behav Med. 1997;4(1):92-100 - PubMed
  17. J Genet Couns. 2015 Dec;24(6):961-70 - PubMed
  18. Clin Genet. 2015 Mar;87(3):209-17 - PubMed
  19. Community Genet. 2004;7(1):15-24 - PubMed
  20. Oncol Nurs Forum. 2005 May 10;32(3):617-23 - PubMed
  21. Fam Cancer. 2018 Jan;17 (1):15-22 - PubMed
  22. Am J Public Health. 2009 Dec;99(12):2203-9 - PubMed
  23. J Consult Clin Psychol. 2002 Jun;70(3):784-97 - PubMed
  24. Cancer Causes Control. 2017 Mar;28(3):191-201 - PubMed
  25. N Engl J Med. 2012 Mar 1;366(9):780-1 - PubMed
  26. Ann Behav Med. 2003 Winter;25(1):16-24 - PubMed
  27. Psychooncology. 2015 Dec;24(12 ):1708-13 - PubMed
  28. Fam Cancer. 2010 Sep;9(3):297-304 - PubMed
  29. J Med Internet Res. 2016 Jan 26;18(1):e20 - PubMed
  30. BMJ. 2006 Aug 26;333(7565):417 - PubMed
  31. Psychooncology. 2013 Jun;22(6):1336-43 - PubMed
  32. J Genet Couns. 2004 Jun;13(3):237-57 - PubMed
  33. Genet Test. 2003 Fall;7(3):225-33 - PubMed
  34. Genet Med. 2006 Sep;8(9):576-82 - PubMed
  35. J Cancer Epidemiol. 2012;2012:298745 - PubMed
  36. Perspect Psychol Sci. 2006 Jun;1(2):164-80 - PubMed
  37. Behav Med. 2017 Oct-Dec;43(4):259-267 - PubMed
  38. Soc Sci Med. 2006 Apr;62(8):1880-90 - PubMed
  39. Eur J Hum Genet. 2017 Jun;25(6):662-668 - PubMed
  40. Eur J Hum Genet. 2016 Apr;24(4):513-20 - PubMed
  41. Ann Intern Med. 2014 Feb 18;160(4):255-66 - PubMed
  42. Nurs Res. 2011 Nov-Dec;60(6):368-77 - PubMed
  43. Ann Oncol. 2011 Sep;22 Suppl 6:vi31-4 - PubMed
  44. J Behav Med. 1993 Aug;16(4):351-70 - PubMed
  45. BMC Cancer. 2013 Mar 01;13:97 - PubMed
  46. J Genet Couns. 2005 Oct;14(5):349-63 - PubMed
  47. Am J Nurs. 2009 Apr;109(4):65-9 - PubMed
  48. Cancer Nurs. 2014 Sep-Oct;37(5):321-30 - PubMed
  49. Cancer Epidemiol Biomarkers Prev. 2006 May;15(5):840-55 - PubMed
  50. J Med Syst. 2017 Feb;41(2):21 - PubMed
  51. Fam Process. 2005 Mar;44(1):3-24 - PubMed
  52. Psychol Health. 2011 Sep;26(9):1113-27 - PubMed
  53. J Med Internet Res. 2006 Jun 23;8(2):e10 - PubMed
  54. Patient Educ Couns. 2015 Apr;98 (4):462-8 - PubMed
  55. Am J Hum Genet. 2003 May;72(5):1117-30 - PubMed

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