Knowledge and uptake of genetic counseling and colonoscopic screening among individuals at increased risk for lynch syndrome and their endoscopists from the family health promotion project

Swati G. Patel, Dennis J. Ahnen, Anita Kinney, Nora Horick, Dianne M. Finkelstein, Deirdre A. Hill, Noralane M. Lindor, Finlay Macrae, Jan T. Lowery

Research output: Contribution to journalArticle

12 Citations (Scopus)

Abstract

OBJECTIVES:Individuals whose families meet the Amsterdam II clinical criteria for hereditary non-polyposis colorectal cancer are recommended to be referred for genetic counseling and to have colonoscopic screening every 1-2 years. To assess the uptake and knowledge of guideline-based genetic counseling and colonoscopic screening in unaffected members of families who meet Amsterdam II criteria and their treating endoscopists.METHODS:Participants in the Family Health Promotion Project who met the Amsterdam II criteria were surveyed regarding their knowledge of risk-appropriate guidelines for genetic counseling and colonoscopy screening. Endoscopy/pathology reports were obtained from patients screened during the study to determine the follow-up recommendations made by their endoscopists. Survey responses were compared using Fisher's Exact and the χ 2 test. Concordance in participant/provider-reported surveillance interval was assessed using the kappa statistic.RESULTS:Of the 165 participants, the majority (98%) agreed that genetics and family history are important predictors of CRC, and 63% had heard of genetic testing for CRC, although only 31% reported being advised to undergo genetic counseling by their doctor, and only 7% had undergone genetic testing. Only 26% of participants reported that they thought they should have colonoscopy every 1-2 years and 30% of endoscopists for these participants recommended 1-2-year follow-up colonoscopy. There was a 65% concordance (weighted kappa 0.42, 95% CI 0.24-0.61) between endoscopist recommendations and participant reports regarding screening intervals.CONCLUSIONS:A minority of individuals meeting Amsterdam II criteria in this series have had genetic testing and reported accurate knowledge of risk-appropriate screening, and only a small percentage of their endoscopists provided them with the appropriate screening recommendations. There was moderate concordance between endoscopist recommendations and participant knowledge suggesting that future educational interventions need to target both health-care providers and their patients.

Original languageEnglish (US)
Pages (from-to)285-293
Number of pages9
JournalAmerican Journal of Gastroenterology
Volume111
Issue number2
DOIs
StatePublished - Feb 1 2016
Externally publishedYes

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Hereditary Nonpolyposis Colorectal Neoplasms
Family Health
Genetic Counseling
Health Promotion
Genetic Testing
Colonoscopy
Guidelines
Health Personnel
Endoscopy
Colorectal Neoplasms
Pathology

All Science Journal Classification (ASJC) codes

  • Gastroenterology
  • Hepatology

Cite this

Patel, Swati G. ; Ahnen, Dennis J. ; Kinney, Anita ; Horick, Nora ; Finkelstein, Dianne M. ; Hill, Deirdre A. ; Lindor, Noralane M. ; Macrae, Finlay ; Lowery, Jan T. / Knowledge and uptake of genetic counseling and colonoscopic screening among individuals at increased risk for lynch syndrome and their endoscopists from the family health promotion project. In: American Journal of Gastroenterology. 2016 ; Vol. 111, No. 2. pp. 285-293.
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title = "Knowledge and uptake of genetic counseling and colonoscopic screening among individuals at increased risk for lynch syndrome and their endoscopists from the family health promotion project",
abstract = "OBJECTIVES:Individuals whose families meet the Amsterdam II clinical criteria for hereditary non-polyposis colorectal cancer are recommended to be referred for genetic counseling and to have colonoscopic screening every 1-2 years. To assess the uptake and knowledge of guideline-based genetic counseling and colonoscopic screening in unaffected members of families who meet Amsterdam II criteria and their treating endoscopists.METHODS:Participants in the Family Health Promotion Project who met the Amsterdam II criteria were surveyed regarding their knowledge of risk-appropriate guidelines for genetic counseling and colonoscopy screening. Endoscopy/pathology reports were obtained from patients screened during the study to determine the follow-up recommendations made by their endoscopists. Survey responses were compared using Fisher's Exact and the χ 2 test. Concordance in participant/provider-reported surveillance interval was assessed using the kappa statistic.RESULTS:Of the 165 participants, the majority (98{\%}) agreed that genetics and family history are important predictors of CRC, and 63{\%} had heard of genetic testing for CRC, although only 31{\%} reported being advised to undergo genetic counseling by their doctor, and only 7{\%} had undergone genetic testing. Only 26{\%} of participants reported that they thought they should have colonoscopy every 1-2 years and 30{\%} of endoscopists for these participants recommended 1-2-year follow-up colonoscopy. There was a 65{\%} concordance (weighted kappa 0.42, 95{\%} CI 0.24-0.61) between endoscopist recommendations and participant reports regarding screening intervals.CONCLUSIONS:A minority of individuals meeting Amsterdam II criteria in this series have had genetic testing and reported accurate knowledge of risk-appropriate screening, and only a small percentage of their endoscopists provided them with the appropriate screening recommendations. There was moderate concordance between endoscopist recommendations and participant knowledge suggesting that future educational interventions need to target both health-care providers and their patients.",
author = "Patel, {Swati G.} and Ahnen, {Dennis J.} and Anita Kinney and Nora Horick and Finkelstein, {Dianne M.} and Hill, {Deirdre A.} and Lindor, {Noralane M.} and Finlay Macrae and Lowery, {Jan T.}",
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Knowledge and uptake of genetic counseling and colonoscopic screening among individuals at increased risk for lynch syndrome and their endoscopists from the family health promotion project. / Patel, Swati G.; Ahnen, Dennis J.; Kinney, Anita; Horick, Nora; Finkelstein, Dianne M.; Hill, Deirdre A.; Lindor, Noralane M.; Macrae, Finlay; Lowery, Jan T.

In: American Journal of Gastroenterology, Vol. 111, No. 2, 01.02.2016, p. 285-293.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Knowledge and uptake of genetic counseling and colonoscopic screening among individuals at increased risk for lynch syndrome and their endoscopists from the family health promotion project

AU - Patel, Swati G.

AU - Ahnen, Dennis J.

AU - Kinney, Anita

AU - Horick, Nora

AU - Finkelstein, Dianne M.

AU - Hill, Deirdre A.

AU - Lindor, Noralane M.

AU - Macrae, Finlay

AU - Lowery, Jan T.

PY - 2016/2/1

Y1 - 2016/2/1

N2 - OBJECTIVES:Individuals whose families meet the Amsterdam II clinical criteria for hereditary non-polyposis colorectal cancer are recommended to be referred for genetic counseling and to have colonoscopic screening every 1-2 years. To assess the uptake and knowledge of guideline-based genetic counseling and colonoscopic screening in unaffected members of families who meet Amsterdam II criteria and their treating endoscopists.METHODS:Participants in the Family Health Promotion Project who met the Amsterdam II criteria were surveyed regarding their knowledge of risk-appropriate guidelines for genetic counseling and colonoscopy screening. Endoscopy/pathology reports were obtained from patients screened during the study to determine the follow-up recommendations made by their endoscopists. Survey responses were compared using Fisher's Exact and the χ 2 test. Concordance in participant/provider-reported surveillance interval was assessed using the kappa statistic.RESULTS:Of the 165 participants, the majority (98%) agreed that genetics and family history are important predictors of CRC, and 63% had heard of genetic testing for CRC, although only 31% reported being advised to undergo genetic counseling by their doctor, and only 7% had undergone genetic testing. Only 26% of participants reported that they thought they should have colonoscopy every 1-2 years and 30% of endoscopists for these participants recommended 1-2-year follow-up colonoscopy. There was a 65% concordance (weighted kappa 0.42, 95% CI 0.24-0.61) between endoscopist recommendations and participant reports regarding screening intervals.CONCLUSIONS:A minority of individuals meeting Amsterdam II criteria in this series have had genetic testing and reported accurate knowledge of risk-appropriate screening, and only a small percentage of their endoscopists provided them with the appropriate screening recommendations. There was moderate concordance between endoscopist recommendations and participant knowledge suggesting that future educational interventions need to target both health-care providers and their patients.

AB - OBJECTIVES:Individuals whose families meet the Amsterdam II clinical criteria for hereditary non-polyposis colorectal cancer are recommended to be referred for genetic counseling and to have colonoscopic screening every 1-2 years. To assess the uptake and knowledge of guideline-based genetic counseling and colonoscopic screening in unaffected members of families who meet Amsterdam II criteria and their treating endoscopists.METHODS:Participants in the Family Health Promotion Project who met the Amsterdam II criteria were surveyed regarding their knowledge of risk-appropriate guidelines for genetic counseling and colonoscopy screening. Endoscopy/pathology reports were obtained from patients screened during the study to determine the follow-up recommendations made by their endoscopists. Survey responses were compared using Fisher's Exact and the χ 2 test. Concordance in participant/provider-reported surveillance interval was assessed using the kappa statistic.RESULTS:Of the 165 participants, the majority (98%) agreed that genetics and family history are important predictors of CRC, and 63% had heard of genetic testing for CRC, although only 31% reported being advised to undergo genetic counseling by their doctor, and only 7% had undergone genetic testing. Only 26% of participants reported that they thought they should have colonoscopy every 1-2 years and 30% of endoscopists for these participants recommended 1-2-year follow-up colonoscopy. There was a 65% concordance (weighted kappa 0.42, 95% CI 0.24-0.61) between endoscopist recommendations and participant reports regarding screening intervals.CONCLUSIONS:A minority of individuals meeting Amsterdam II criteria in this series have had genetic testing and reported accurate knowledge of risk-appropriate screening, and only a small percentage of their endoscopists provided them with the appropriate screening recommendations. There was moderate concordance between endoscopist recommendations and participant knowledge suggesting that future educational interventions need to target both health-care providers and their patients.

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