Literature DB >> 33483364

Psychological impact of genetic and clinical screening for pulmonary fibrosis on asymptomatic first-degree relatives of affected individuals.

Nikkola Carmichael1,2, Jose M Martinez Manzano3, Luisa D Quesada-Arias3, Sergio de Frías Poli3, Maura Alvarez Baumgartner3, Maria A Planchart Ferretto3, Lisa DiGianni4,5, Shannon Gampala-Sagar4,5, Dominick A Leone5, Swati Gulati3, Souheil Y El-Chemaly3,6, Hilary J Goldberg3,6, Rachel Putman3,6, Hiroto Hatabu6,7, Ivan O Rosas8, Gary M Hunninghake3,6,7, Benjamin A Raby4,2,6.   

Abstract

Screening for pulmonary fibrosis may help to identify early stages of the disease. We assessed the psychological impact of screening undiagnosed first-degree relatives of patients with pulmonary fibrosis by administering two validated measures after participants received their results: the Decisional Regret Scale and the Feelings About genomiC Testing Results Questionnaire. More than 90% of relatives reported either no or mild decisional regret. Increased measures of decisional regret and negative feelings were present in those found to have a low diffusion capacity of carbon monoxide or interstitial lung abnormalities. Results of telomere length and genetic testing did not significantly impact regret. © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.

Entities:  

Keywords:  idiopathic pulmonary fibrosis

Mesh:

Year:  2021        PMID: 33483364      PMCID: PMC8238310          DOI: 10.1136/thoraxjnl-2020-216244

Source DB:  PubMed          Journal:  Thorax        ISSN: 0040-6376            Impact factor:   9.102


  7 in total

1.  The Feelings About genomiC Testing Results (FACToR) Questionnaire: Development and Preliminary Validation.

Authors:  Meng Li; Caroline S Bennette; Laura M Amendola; M Ragan Hart; Patrick Heagerty; Bryan Comstock; Peter Tarczy-Hornoch; Stephanie M Fullerton; Dean A Regier; Wylie Burke; Susan B Trinidad; Gail P Jarvik; David L Veenstra; Donald L Patrick
Journal:  J Genet Couns       Date:  2018-12-14       Impact factor: 2.537

2.  Flow cytometry and FISH to measure the average length of telomeres (flow FISH).

Authors:  Gabriela M Baerlocher; Irma Vulto; Gary de Jong; Peter M Lansdorp
Journal:  Nat Protoc       Date:  2006       Impact factor: 13.491

3.  Interstitial Lung Disease in Relatives of Patients with Pulmonary Fibrosis.

Authors:  Gary M Hunninghake; Luisa D Quesada-Arias; Nikkola E Carmichael; Jose M Martinez Manzano; Sergio Poli De Frías; Maura Alvarez Baumgartner; Lisa DiGianni; Shannon N Gampala-Sagar; Dominick A Leone; Swati Gulati; Souheil El-Chemaly; Hilary J Goldberg; Rachel K Putman; Hiroto Hatabu; Benjamin A Raby; Ivan O Rosas
Journal:  Am J Respir Crit Care Med       Date:  2020-05-15       Impact factor: 21.405

4.  Clinical exome sequencing vs. usual care for hereditary colorectal cancer diagnosis: A pilot comparative effectiveness study.

Authors:  Xin Niu; Laura M Amendola; Ragan Hart; Caroline S Bennette; Patrick Heagerty; Martha Horike-Pyne; Susan B Trinidad; Elisabeth A Rosenthal; Bryan Comstock; Chris Nefcy; Fuki M Hisama; Robin L Bennett; William M Grady; Carlos J Gallego; Peter Tarczy-Hornoch; Stephanie M Fullerton; Wylie Burke; Dean A Regier; Michael O Dorschner; Brian H Shirts; Peggy D Robertson; Deborah A Nickerson; Donald L Patrick; Gail P Jarvik; David L Veenstra
Journal:  Contemp Clin Trials       Date:  2019-08-07       Impact factor: 2.226

Review 5.  Idiopathic pulmonary fibrosis.

Authors:  T J Gross; G W Hunninghake
Journal:  N Engl J Med       Date:  2001-08-16       Impact factor: 91.245

6.  Regret associated with the decision for breast reconstruction: the association of negative body image, distress and surgery characteristics with decision regret.

Authors:  Joanne Sheehan; Kerry A Sherman; Thomas Lam; John Boyages
Journal:  Psychol Health       Date:  2008

7.  Validation of a decision regret scale.

Authors:  Jamie C Brehaut; Annette M O'Connor; Timothy J Wood; Thomas F Hack; Laura Siminoff; Elisa Gordon; Deb Feldman-Stewart
Journal:  Med Decis Making       Date:  2003 Jul-Aug       Impact factor: 2.583

  7 in total
  4 in total

1.  Pulmonary fibrosis screening: quantifying the psychological impact.

Authors:  Chad A Newton
Journal:  Thorax       Date:  2021-02-23       Impact factor: 9.139

2.  The Role of Genetic Testing in Pulmonary Fibrosis: A Perspective From the Pulmonary Fibrosis Foundation Genetic Testing Work Group.

Authors:  Chad A Newton; Justin M Oldham; Carolyn Applegate; Nikkola Carmichael; Karen Powell; Dan Dilling; Shelley L Schmidt; Mary Beth Scholand; Mary Armanios; Christine Kim Garcia; Jonathan A Kropski; Janet Talbert
Journal:  Chest       Date:  2022-03-23       Impact factor: 10.262

3.  Utility of Telomerase Gene Mutation Testing in Patients with Idiopathic Pulmonary Fibrosis in Routine Practice.

Authors:  Julij Šelb; Katarina Osolnik; Izidor Kern; Peter Korošec; Matija Rijavec
Journal:  Cells       Date:  2022-01-22       Impact factor: 6.600

Review 4.  Familial Pulmonary Fibrosis: Genetic Features and Clinical Implications.

Authors:  David Zhang; Chad A Newton
Journal:  Chest       Date:  2021-06-26       Impact factor: 9.410

  4 in total

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