PS1-08: Genetic Service Providers Identify Barrier... [Clin Med Res. 2010] - PubMed result

Clin Med Res. 2010 Dec;8(3-4):190.
PS1-08: Genetic Service Providers Identify Barriers Related to Referral, Counseling and Testing for Familial Cancer.

Jackson J, Rolnick C, Rahm A, Nekhlyudov L, Goddard K, Field T, McCarty C, Nakasato C, Roblin D, Anderson C, Valdez R.

Abstract

Background and Aims: Little of what we know about the use of family history and genetic risk assessment services has been gathered from those engaged in counseling. To fill this gap, we conducted a survey to understand the processes of identifying and referring high-risk patients for genetic counseling and testing for familial cancer from the perspective of genetic service providers. Methods: Genetics professionals (genetic counselors and physician geneticists) from eight CRN sites were surveyed. The survey, administered via Survey Monkey, included questions regarding sources of referrals, steps to get an appointment, use of electronic medical records, perceived barriers to referral, strategies employed to improve identification and referral of high-risk patients, and ways to increase awareness among providers of the value of obtaining family history of cancer. Analyses involved computing frequencies of categorical responses and means of continuous responses (performed in SAS v9.1). Results: Of the 40 invited, twenty-eight individuals responded to the survey (70%). Referrals were predominantly from providers (89% on average) versus self-referrals (10% on average). Barriers that may prevent patients who are referred for counseling services from being seen included the following: genetic risk evaluation was not a priority for patients (72%, 18 of 25 responding to this item), concerns about insurance (52%, 13 of 25), distance to appointments (48%, 12 of 25), lack of patient and/or provider knowledge (36%, 9 of 25), discouragement by family members (28%, 7 of 25), and fear (20%, 5 of 25). Attending meetings was the most frequently (57%, 16 of 28) reported strategy to increase awareness among and referrals from providers. Provider education was mentioned most frequently (70%, 14 of 20 responding to this item) to improve understanding of the value of family history documentation and increasing referrals. Conclusions: Our survey identified several areas in the identification and referral process for cancer genetic services where opportunities for improvement exist including increasing awareness of the importance of genetic risk assessment among general practitioners, creating a simple standard for collecting genetic information and referring patients, and promoting the value of family history and the importance of determining genetic susceptibility, when appropriate, among patients and providers.

PMID: 21177573 [PubMed - in process]PMCID: PMC3006501
Free PMC Article
PS1-08: Genetic Service Providers Identify Barrier... [Clin Med Res. 2010] - PubMed result

PS1-08: Genetic Service Providers Identify Barriers Related to Referral, Counseling and Testing for Familial Cancer
full-text:
PS1-08: Genetic Service Providers Identify Barriers Related to Referral, Counseling and Testing for Familial Cancer