Evaluation of a decision coaching program for structured decision support in preference sensitive decisions of risk-adapted prevention for BRCA1/2 gene mutation carriers (EDCP-BRCA)

Conditions

ICD-10-CM: Z15.01 BRCA1/2 gene mutation, no prior history of breast and/or ovarian cancer

Kautz-Freimuth S, Shukri A, Stracke C, Isselhard A, Berger-Höger B, Steckelberg A, Vitinius F, Dikow N, Kiechle M, Meisel C, Wöckel A, von Mackelenbergh MT, Schmutzler R, Rhiem K, Stock S.

2025-01-281 citations

10.1186/s12885-025-13541-1

Nurse-led decision coaching by specialized nurses for healthy BRCA1/2 gene mutation carriers - adaptation and pilot testing of a curriculum for nurses: a qualitative study.

Berger-Höger B, Vitinius F, Fischer H, Beifus K, Köberlein-Neu J, Isselhard A, Töpper M, Wiedemann R, Rhiem K, Schmutzler R, Stock S, Steckelberg A.

2022-02-108 citations

10.1186/s12912-022-00810-8

Implementation and evaluation of a nurse-led decision-coaching program for healthy breast cancer susceptibility gene (BRCA1/2) mutation carriers: a study protocol for the randomized controlled EDCP-BRCA study.

Isselhard A, Töpper M, Berger-Höger B, Steckelberg A, Fischer H, Vitinius F, Beifus K, Köberlein-Neu J, Wiedemann R, Rhiem K, Schmutzler R, Stock S.

2020-06-0810 citations

10.1186/s13063-020-04431-x

Interventions

Group 1: Women in the intervention group receive an individualized decision coaching by specialized breast care nurses. Group 2: Women in the control group receive usual care, consisting of risk coun

Eligibility

Sex/Gender

Female

Age

18 Years to 60 Years

Inclusion criteria

Inclusion criteria: BRCA1/2 gene mutation

Exclusion criteria

Exclusion criteria: cancer diagnosis, heart condition, severe mental illness and/or suicidal, insufficient German

Design outcomes

Primary

Measure	Time frame
The primary outcome of the study is the congruence between the preferred and actual role in the decision-making process. Questionnaire data will be gathered from participants at three different points in time. T1 is measured one week after getting the genetic result, T2 is measured 12 weeks after getting the genetic result and T3 six months after getting the genetic result. The primary outcome will be the difference between T1 and T2.	—

Measure

Time frame

The primary outcome of the study is the congruence between the preferred and actual role in the decision-making process. Questionnaire data will be gathered from participants at three different points in time. T1 is measured one week after getting the genetic result, T2 is measured 12 weeks after getting the genetic result and T3 six months after getting the genetic result. The primary outcome will be the difference between T1 and T2.

—

Secondary

Measure	Time frame
Secondary outcomes are satisfaction with the actual role, decisional conflict, knowledge and attitude towards preventions strategies, stage of decision making, symptoms of anxiety and depression, coping self-efficacy, subjective impact of the test result and self-concept of BRCA1/2 carriers.	—

Countries

Germany

Contacts

Public ContactAnna Isselhard

Institut für Gesundheitsökonomie und klinische Epidemiologie, Universitätsklinikum Köln

anna.isselhard@uk-koeln.de022147830919

Outcome results

None listed