Interventions to support patients with sharing genetic test results with at-risk relatives: a synthesis without meta-analysis (SWiM)

Abstract

Whilst the finding of heritable susceptibility to disease was once relatively rare, mainstreaming of genetic testing has resulted in a steady increase. Patients are often encouraged to share their genetic test results with relevant relatives, but relatives may not receive this information, leaving them without knowledge of their own risk. Therefore, strategies to help communicate such information are important. This review aimed to explore the efficacy of existing interventions to improve the sharing of genetic test results. A synthesis without meta-analysis design was used. A systematic search of Medline, CINAHL, PsychINFO, and AMED was conducted, and five studies were identified worldwide. Data were extracted for each study regarding study aim, participant characteristics, condition, intervention details, comparison, study duration, outcome measures, theory and behaviour change techniques used. Limited efficacy and application of theory was found. Knowledge, motivation and self-efficacy were not increased in any intervention. No gender differences in communication behaviour were encountered in interventions that recruited men and women. Two studies reported an evaluation of acceptability, which showed that the interventions were well received by patients and health professionals. No study reported the involvement of the target population in any phase of intervention development. Given the lack of health psychology-informed interventions in this area of clinical genetics, we recommend genetic health professionals, health psychologists and patients collaborate on all stages of future interventions that involve the cascading of genetic health information within families. We also provide guidance regarding use of theory and intervention elements for future intervention development.

Fig. 1. The inclusion and exclusion criteria organised into four categories.

Population, Intervention, Comparison and Outcome (PICO).

Fig. 2

The PRISMA flow diagram illustrating the stages of the systematic review starting with the original search which identified 1951 articles and ending with the five studies included in the synthesis.

Fig. 3. The COM-B model which theorises that Capability, Opportunity, and Motivation lead to Behaviour.

The three key concepts are divided into two further categories to capture distinct elements of each concept [61].

Fig. 4. The Theoretic Domains Framework includes the COM-B model.

It is broken down into 14 domains to enhance specificity [62].