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How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

ABSTRACT: Supporting consultands to communicate risk information with their relatives is key to obtaining the full benefits of genetic health care. To understand how health-care professionals address this issue in clinical practice and what interventions are used specifically to assist consultands in their communication of genetic information to appropriate relatives, we conducted a systematic review. Four electronic databases and four subject-specific journals were searched for papers published, in English, between January 1997 and May 2014. Of 2926 papers identified initially, 14 papers met the inclusion criteria for the review and were heterogeneous in design, setting and methods. Thematic data analysis has shown that dissemination of information within families is actively encouraged and supported by professionals. Three overarching themes emerged: (1) direct contact from genetic services: sending letters to relatives of mutation carriers; (2) professionals' encouragement of initially reluctant consultands to share relevant information with at-risk relatives and (3) assisting consultands in communicating genetic information to their at-risk relatives, which included as subthemes (i) psychoeducational guidance and (ii) written information aids. Findings suggest that professionals' practice and interventions are predicated on the need to proactively encourage family communication. We discuss this in the context of what guidance of consultands by professionals might be appropriate, as best practices to facilitate family communication, and of the limits to non-directiveness in genetic counselling.

SUBMITTER: Mendes A

PROVIDER: S-EPMC4755382 | biostudies-literature | 2016 Mar

REPOSITORIES: biostudies-literature

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How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

Mendes Álvaro Á Paneque Milena M Sousa Liliana L Clarke Angus A Sequeiros Jorge J

European journal of human genetics : EJHG 20150812 3

Supporting consultands to communicate risk information with their relatives is key to obtaining the full benefits of genetic health care. To understand how health-care professionals address this issue in clinical practice and what interventions are used specifically to assist consultands in their communication of genetic information to appropriate relatives, we conducted a systematic review. Four electronic databases and four subject-specific journals were searched for papers published, in Engli ...[more]

PMID: 26264439

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Project description:Modern healthcare is becoming increasingly technologized, knowledge-intensive, and specialized, which has consequences for communication between patients and practitioners in clinical encounters. Health information is increasingly accessible to patients through online resources. The objective of this paper is to provide an overview of existing studies that address how patients communicate with practitioners about online health information and to identify the key topics raised in these studies. With the concept of eHealth literacy as its point of departure, this paper specifically highlights the eHealth literacy topic of how patients comprehend, appraise and communicate online health information before and during the encounter with the healthcare professionals. In the literature search, we focus on qualitative studies that consider patients' and/or practitioners' reflections on online health information. We searched PUBMED, SCOPUS and Web of Science to capture research from various fields. Sixteen studies were included that met the following criteria: Qualitative study, focus on patient-practitioner communication, eHealth literacy and online information. The results show that the vast majority of studies were based on qualitative interviews, addressing patients' and practitioners' perspectives. Key topics in studies addressing patient perspectives were: reasons for seeking online information; calibrating understanding of online information with the practitioner; and barriers to discussing online information with practitioners. Key topics raised in studies focusing on practitioners were: trust in the patient and the online health information he/she presented as well as strategies to respond to patients who referred to online health information. The review highlights the need for further qualitative studies, preferably observational studies from authentic clinical communication situations, in order to capture how patients and practitioners communicate about online health information.

Project description:BackgroundPrimary care providers (PCPs) can play a critical role in helping patients receive the preventive health benefits of cancer genetic risk information. Thus, the objective of this systematic review was to identify studies of US PCPs' knowledge, attitudes, and communication-related behaviors regarding genetic tests that could inform risk-stratification approaches for breast, colorectal, and prostate cancer screening in order to describe current findings and research gaps.MethodsWe conducted a systematic search of six electronic databases to identify peer-reviewed empirical articles relating to US PCPs and genetic testing for breast, colorectal, or prostate cancer published in English from 2008 to 2016. We reviewed these data and used narrative synthesis methods to integrate findings into a descriptive summary and identify research needs.ResultsWe identified 27 relevant articles. Most focused on genetic testing for breast cancer (23/27) and colorectal cancer risk (12/27); only one study examined testing for prostate cancer risk. Most articles addressed descriptive research questions (24/27). Many studies (24/27) documented PCPs' knowledge, often concluding that providers' knowledge was incomplete. Studies commonly (11/27) examined PCPs' attitudes. Across studies, PCPs expressed some concerns about ethical, legal, and social implications of testing. Attitudes about the utility of clinical genetic testing, including for targeted cancer screening, were generally favorable; PCPs were more skeptical of direct-to-consumer testing. Relatively fewer studies (9/27) examined PCPs' communication practices regarding cancer genetic testing.DiscussionThis review indicates a need for investigators to move beyond descriptive research questions related to PCPs' knowledge and attitudes about cancer genetic testing. Research is needed to address important gaps regarding the development, testing, and implementation of innovative interventions and educational programs that can improve PCPs' genetic testing knowledge, assuage concerns about the appropriateness of cancer genetic testing, and promote open and effective patient-provider communication about genetic risk and genetic testing.

Project description:ImportanceWhen caregivers cannot attend the clinic visit for the person they provide care for, patients are the predominant source of clinic visit information; however, poor patient recall inhibits the quality of information shared, resulting in poor caregiver preparedness and contributing to caregiver morbidity. Technological solutions exist to sharing clinic visit information, but their effectiveness is unclear.ObjectivesTo assess if and how technology is being used to connect informal caregivers to patient clinic visit information when they cannot otherwise attend, and its impact on caregiver and patient outcomes.Evidence reviewMEDLINE, Cochrane, Scopus, and CINAHL were searched through 5/3/2020 with no language restrictions or limits. ClinicalTrials.gov and other reference lists were included in the search. Randomized controlled trials (RCTs) and nonrandomized trials that involved using a technological medium e.g., video or the electronic health record, to communicate visit information to a non-attending caregiver were included. Data were collected and screened using a standardized data collection form. Cochrane's Risk of Bias 2.0 and the Newcastle-Ottawa Scale were used for RCTs and nonrandomized trials, respectively. All data were abstracted by two independent reviewers, with disagreements resolved by a third reviewer.FindingsOf 2115 studies identified in the search, four met criteria for inclusion. Two studies were randomized controlled trials and two were nonrandomized trials. All four studies found positive effects of their intervention on caregiver outcomes of interest, and three out of four studies found statistically significant improvements in key outcomes for caregivers receiving visit information. Improved outcomes included caregiver happiness, caregiver activation, caregiver preparedness, and caregiver confidence in managing patient health.Conclusions and relevanceOur review suggests that using technology to give a caregiver access to clinical visit information could be beneficial to various caregiver outcomes. There is an urgent need to address the lack of research in this area.

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How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

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How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

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