Development of a web-based family intervention for BRCA carriers and their biological relatives: Acceptability, feasibility, and usability study

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

Research output: Contribution to journalArticle

4 Citations (Scopus)

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.

Original languageEnglish (US)
Article numbere7
JournalJournal of Medical Internet Research
Volume20
Issue number4
DOIs
StatePublished - Apr 1 2018

Fingerprint

Neoplasm Genes
Feasibility Studies
Breast Neoplasms
Communication
Focus Groups
Genetic Services
Genes
Control Groups
Mutation
Decision Support Techniques
Genetic Testing
Random Allocation
Neoplasms
Decision Making
Nurses

Keywords

  • BRCA families
  • Communication
  • Coping
  • Family-based intervention study
  • Genetic testing
  • Patient decision-aid
  • Psycho-educational
  • Skills-building intervention study
  • Web-based intervention study

ASJC Scopus subject areas

  • Health Informatics

Cite this

Development of a web-based family intervention for BRCA carriers and their biological relatives : Acceptability, feasibility, and usability study. / Katapodi, Maria C.; Jung, Miyeon; Schafenacker, Ann M.; Milliron, Kara J.; Mendelsohn-Victor, Kari E.; Merajver, Sofia D.; Northouse, Laurel L.

In: Journal of Medical Internet Research, Vol. 20, No. 4, e7, 01.04.2018.

Research output: Contribution to journalArticle

Katapodi, Maria C. ; Jung, Miyeon ; Schafenacker, Ann M. ; Milliron, Kara J. ; Mendelsohn-Victor, Kari E. ; Merajver, Sofia D. ; Northouse, Laurel L. / Development of a web-based family intervention for BRCA carriers and their biological relatives : Acceptability, feasibility, and usability study. In: Journal of Medical Internet Research. 2018 ; Vol. 20, No. 4.
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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.",
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T2 - Acceptability, feasibility, and usability study

AU - Katapodi, Maria C.

AU - Jung, Miyeon

AU - Schafenacker, Ann M.

AU - Milliron, Kara J.

AU - Mendelsohn-Victor, Kari E.

AU - Merajver, Sofia D.

AU - Northouse, Laurel L.

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AB - 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.

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