Evidence map›Paper›PMID 29653920›Full record

ArticleJMIR cancer2018

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

Registry-linked trialOpen access · goldAbstract read
In one paragraph

Article in JMIR cancer, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02154633 (Development of a Family Communication and Decision-support Intervention for Women That Carry a BRCA1 or a BRCA2 Mutation and Their At-Risk Female Family Members), which is not on this map. Cited by 19 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
19citing papers in PubMed, 1 pooled it
2.7field-weighted citation impact, top 10% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02154633 nacompletednot on this map

Development of a Family Communication and Decision-support Intervention for Women That Carry a BRCA1 or a BRCA2 Mutation and Their At-Risk Female Family Members

TypeinterventionalSponsorUniversity of MichiganRan2010 to 2017Enrolled13ConditionsWomen With BRCA 1 or BRCA 2 Mutation, Non-tested Female Family MembersArmsFamily Gene Toolkit, Delayed Family Gene Toolkit
3 · Its place in the literature

Who cites it

19 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 3 institutions in 2 countries.

Maria C KatapodiDepartment of Public Health, Faculty of Medicine, University of Basel, Basel, Switzerland.ORCID http://orcid.org/0000-0003-3903-3750
Miyeon JungSchool of Nursing, Indiana University, Indianapolis, IN, United States.ORCID http://orcid.org/0000-0003-1607-1623
Ann M SchafenackerSchool of Nursing, University of Michigan, Ann Arbor, MI, United States.ORCID http://orcid.org/0000-0003-2569-4718
Kara J MillironComprehensive Cancer Center, University of Michigan, Ann Arbor, MI, United States.ORCID http://orcid.org/0000-0002-4329-7874
Kari E Mendelsohn-VictorSchool of Nursing, University of Michigan, Ann Arbor, MI, United States.ORCID http://orcid.org/0000-0002-2922-242X
Sofia D MerajverMedical School, University of Michigan, Ann Arbor, MI, United States.ORCID http://orcid.org/0000-0002-6823-7130
Laurel L NorthouseSchool of Nursing, University of Michigan, Ann Arbor, MI, United States.ORCID http://orcid.org/0000-0002-2567-2183
University of Michigan · USIndiana University – Purdue University Indianapolis · USUniversity of Basel · CH

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundCarriers 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.

objectiveThe 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.

methodsWe 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.

resultsThe 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.

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

Indexed as

BRCA familiescommunication and copingfamily-based intervention studygenetic testingpatient decision-aidpsycho-educational and skills-building intervention studyWeb-based intervention study

Identifiers

PMID29653920
PMCPMC5924376
OpenAlexW2796628163

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.