Dataset Information

Information-seeking and sharing behavior following genomic testing for diabetes risk.

ABSTRACT: As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor's office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants' information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company's website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p?=?0.0001). Understanding patients' interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician's office. Genetic counselors' expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.

SUBMITTER: Mills R

PROVIDER: S-EPMC4454388 | biostudies-literature | 2015 Feb

REPOSITORIES: biostudies-literature

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Information-seeking and sharing behavior following genomic testing for diabetes risk.

Mills Rachel R Powell Jill J Barry William W Haga Susanne B SB

Journal of genetic counseling 20140614 1

As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor's office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants' information-seeking and sharing behaviors after rece ...[more]

PMID: 24927802

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Project description:Information-seeking behaviour is necessary to improve knowledge on diabetes therapy and complications. Combined with other self-management skills and autonomous handling of the disease, it is essential for achieving treatment targets. However, a systematic review addressing this topic is lacking. The aims of this systematic review were to identify and analyse existing knowledge of information-seeking behaviour: (1) types information-seeking behaviour, (2) information sources, (3) the content of searched information, and (4) associated variables that may affect information-seeking behaviour.The systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) requirements. MEDLINE, CINAHL, EMBASE, ScienceDirect, PsycInfo, Cochrane Library, Web of Science, CCMed, ERIC, Journals@OVID, Deutsches Ärzteblatt and Karlsruher virtueller Katalog (KvK) databases were searched. Publications dealing with information-seeking behaviour of people with diabetes mellitus published up to June 2015 were included. A forward citation tracking was performed in September 2016 and June 2017. Additionally, an update of the two main databases (MEDLINE, CINAHL) was conducted, considering studies published up to July 2017. Studies published in languages other than English or German were excluded, as well as letters, short reports, editorials, comments and discussion papers. A study selection and the critical appraisal of the selected studies were performed independently by two reviewers. A third reviewer was consulted if any disagreement was found. Data extraction and content analysis were performed using selected dimensions of Wilson's 'model of information behaviour'.Twenty-six studies were included. Five 'types of information-seeking behaviour' were identified, e.g. passive and active search. The 'Internet' and 'healthcare professionals' were the most frequently reported sources. 'Diet', 'complications', 'exercise' and 'medications and pharmacological interactions' were the most frequently identified content of information. Seven main categories including associated variables were identified, e.g. 'socioeconomic', 'duration of DM', and 'lifestyle'.The systematic review provides a valuable overview of available knowledge on the information-seeking behaviour of people with diabetes mellitus, although there are only a few studies. There was a high heterogeneity regarding the research question, design, methods and participants. Although the Internet is often used to seek information, health professionals still play an important role in supporting their patients' information-seeking behaviour. Specific needs of people with diabetes must be taken into consideration.PROSPERO CRD42016037312.

Project description:BACKGROUND:Current medical professions involve an extensive knowledge of the latest validated scientific data to implement disease diagnosis, therapeutic strategies, and patient care. Although clinicians can refer to a growing number and type of information sources to keep current with new scientific achievements, there are still various concerns about medical information validity, quality, and applicability into clinical practice. Novel strategies are required to identify physicians' real-life needs with the final aim to improve modern medical information delivery. OBJECTIVE:Our research used an innovative tool to collect real-time physician queries in order to investigate information needs and seeking behavior of Italian neurologists treating patients with multiple sclerosis (MS) and migraine. METHODS:The study was designed as an exploratory mixed methods (ie, qualitative and quantitative) study involving 15 consecutive days of observation. A total of 50 neurologists (n=25 MS and n=25 migraine specialists) were recruited. Data were collected using an instant messaging mobile app designed for this research. At each information-seeking event, moderators triggered a computer-assisted personal interview including both semistructured interview and close-ended questions. Interactions and physician queries collected using the mobile app were coded into emerging themes by content analysis. RESULTS:Neurologist queries were relevant to the following major themes: therapy management (36/50, 71%) and drug-related information (34/50, 67%), followed by diagnostic strategies and procedures (21/50, 42%). Quantitative analysis indicated online resources were preferentially used by clinicians (48/50, 96%) compared with offline sources (24/50, 47%). A multichannel approach, in which both online and offline sources were consulted to meet the same need, was adopted in 33% (65/198) of information-seeking events. Neurologists more likely retrieved information from online relative to offline channels (F=1.7; P=.01). MS specialists were 53% more likely to engage in one information-seeking event compared with migraine neurologists (risk ratio 1.54; 95% CI 1.16-2.05). MS specialists tended to be more interested in patient-related content than migraine clinicians (28% [7/25] vs 10% [2/25], P=.06), who conversely more likely sought information concerning therapy management (85% [21/25] vs 60% [15/25], P=.05). Compared with MS clinicians, migraine specialists had a harder time finding the required information, either looking at online or offline channels (F=12.5; P=.01) and less frequently used offline channels (30% [8/25] vs 60% [15/25] of information-seeking events, P=.02). When multiple sources needed to be consulted to retrieve an information item, a reduced satisfaction rate was observed both among migraine and MS specialists (single source vs multiple sources P=.003). CONCLUSIONS:This study provides a detailed description of real-life seeking behavior, educational needs, and information sources adopted by Italian MS and migraine neurologists. Neurologist information needs and seeking behavior reflect the specific characteristics of the specialty area in which they operate. These findings suggest identification of time- and context-specific needs of clinicians is required to design an effective medical information strategy.

Dataset Information

Information-seeking and sharing behavior following genomic testing for diabetes risk.

Publications

Information-seeking and sharing behavior following genomic testing for diabetes risk.

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