Literature DB >> 20921894

Generation after generation: exploring the psychological impact of providing genetic services through a cascading approach.

Donald W Hadley1, Sato Ashida, Jean F Jenkins, Jean C Martin, Kathleen A Calzone, Natalia R Kuhn, Colleen M McBride, Ilan R Kirsch, Laura M Koehly.   

Abstract

PURPOSE: The provision of genetic services often occurs in a cascading fashion within families experiencing inherited diseases. This study examines whether previous family experiences with genetic services influences levels of psychological well-being of family members receiving services later.
METHODS: Two hundred ninety-seven persons from 38 families with Lynch syndrome completed questionnaires before receiving genetic services. Baseline levels of test-related distress, depressive symptoms, and cancer worries were assessed in relationship to the (1) amount of time elapsed since services were provided to the index case and (2) generation of the family member relative to the index case.
RESULTS: Family members in the same generation as the index case experienced significant increases in test-related distress (P = 0.003) and cancer worry (P = 0.001) with increasing time between receipt of genetic test results by the index case and provision of services to family members. Change in the number of depressive symptoms was not significant (P = 0.17).
CONCLUSION: The provision of genetic services through a cascading approach significantly increases distress and worry among family members within the same generation as the index case who receive services at increasingly distant time intervals. Additional research is needed to explore social influences after the introduction of genetic services.

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Year:  2010        PMID: 20921894      PMCID: PMC7282696          DOI: 10.1097/GIM.0b013e3181f69dbb

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  29 in total

1.  Family information service and hereditary cancer.

Authors:  H T Lynch
Journal:  Cancer       Date:  2001-02-15       Impact factor: 6.860

2.  Deliberate deceit of family members: a challenge to providers of clinical genetics services.

Authors:  Jennifer T Loud; Nancy E Weissman; June A Peters; Ruthann M Giusti; Benjamin S Wilfond; Wylie Burke; Mark H Greene
Journal:  J Clin Oncol       Date:  2006-04-01       Impact factor: 44.544

3.  Genetic testing in familial melanoma: uptake and implications.

Authors:  Femke A de Snoo; Samantha R Riedijk; Anneke M van Mil; Wilma Bergman; Jeanet A C ter Huurne; Reinier Timman; Wieke Bertina; Nelleke A Gruis; Hans F A Vasen; Arie van Haeringen; Martijn H Breuning; Aad Tibben
Journal:  Psychooncology       Date:  2008-08       Impact factor: 3.894

4.  Cancer risk in hereditary nonpolyposis colorectal cancer syndrome: later age of onset.

Authors:  Heather Hampel; Julie A Stephens; Eero Pukkala; Risto Sankila; Lauri A Aaltonen; Jukka-Pekka Mecklin; Albert de la Chapelle
Journal:  Gastroenterology       Date:  2005-08       Impact factor: 22.682

5.  Toward a biopsychosocial model for 21st-century genetics.

Authors:  John S Rolland; Janet K Williams
Journal:  Fam Process       Date:  2005-03

Review 6.  Psychological impact of genetic testing for cancer susceptibility: an update of the literature.

Authors:  Bettina Meiser
Journal:  Psychooncology       Date:  2005-12       Impact factor: 3.894

7.  Genetic testing in families with hereditary nonpolyposis colon cancer.

Authors:  C Lerman; C Hughes; B J Trock; R E Myers; D Main; A Bonney; M R Abbaszadegan; A E Harty; B A Franklin; J F Lynch; H T Lynch
Journal:  JAMA       Date:  1999-05-05       Impact factor: 56.272

Review 8.  Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: a systematic review.

Authors:  Noralane M Lindor; Gloria M Petersen; Donald W Hadley; Anita Y Kinney; Susan Miesfeldt; Karen H Lu; Patrick Lynch; Wylie Burke; Nancy Press
Journal:  JAMA       Date:  2006-09-27       Impact factor: 56.272

9.  Testing participation in BRCA1/2-positive families: initiator role of index cases.

Authors:  Cécile Blandy; Françoise Chabal; Dominique Stoppa-Lyonnet; Claire Julian-Reynier
Journal:  Genet Test       Date:  2003

10.  The impact of familial environment on depression scores after genetic testing for cancer susceptibility.

Authors:  S Ashida; D W Hadley; B K Vaughn; N R Kuhn; J F Jenkins; L M Koehly
Journal:  Clin Genet       Date:  2008-11-17       Impact factor: 4.438

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  6 in total

Review 1.  Population sciences, translational research, and the opportunities and challenges for genomics to reduce the burden of cancer in the 21st century.

Authors:  Muin J Khoury; Steven B Clauser; Andrew N Freedman; Elizabeth M Gillanders; Russ E Glasgow; William M P Klein; Sheri D Schully
Journal:  Cancer Epidemiol Biomarkers Prev       Date:  2011-07-27       Impact factor: 4.254

2.  Genetics' influence on patient experiences with a rare chronic disorder: a photovoice study of living with alpha-1 antitrypsin deficiency.

Authors:  Pamela Holtzclaw Williams; Lucinda Shore; Marvin Sineath; Jim Quill; Barbara Warner; Jamila Keith; Deirdre Walker; Sara Wienke; Susan Flavin; Charlie Strange
Journal:  Nurs Clin North Am       Date:  2013-12       Impact factor: 1.208

3.  The role of religious and existential well-being in families with Lynch syndrome: prevention, family communication, and psychosocial adjustment.

Authors:  Bronwyn A Morris; Donald W Hadley; Laura M Koehly
Journal:  J Genet Couns       Date:  2013-01-25       Impact factor: 2.537

4.  Exploring psychological responses to genetic testing for Lynch Syndrome within the family context.

Authors:  Dina Eliezer; Donald W Hadley; Laura M Koehly
Journal:  Psychooncology       Date:  2014-05-28       Impact factor: 3.894

Review 5.  The psychological impact of genetic information on children: a systematic review.

Authors:  Claire E Wakefield; Lucy V Hanlon; Katherine M Tucker; Andrea F Patenaude; Christina Signorelli; Jordana K McLoone; Richard J Cohn
Journal:  Genet Med       Date:  2016-01-07       Impact factor: 8.822

Review 6.  Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review.

Authors:  Pedro Gomes; Giada Pietrabissa; Eunice R Silva; João Silva; Paula Mena Matos; Maria Emília Costa; Vanessa Bertuzzi; Eliana Silva; Maria Carolina Neves; Célia M D Sales
Journal:  Int J Environ Res Public Health       Date:  2022-01-30       Impact factor: 3.390

  6 in total

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