Literature DB >> 29706632

Distress, uncertainty, and positive experiences associated with receiving information on personal genomic risk of melanoma.

Amelia K Smit1,2,3, Ainsley J Newson4, Megan Best4,5, Caro-Anne Badcock6, Phyllis N Butow7, Judy Kirk8, Kate Dunlop9, Georgina Fenton6, Anne E Cust6,10.   

Abstract

The aim of this research was to understand how genomics-based personal melanoma risk information impacts psychological and emotional health outcomes in the general population. In a pilot randomized controlled trial, participants (n = 103) completed the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire, 3 months after receiving personal melanoma genomic risk information. Mean scores for MICRA items and subscales were stratified by genomic risk group (low, average, high), gender, education, age, and family history of melanoma. P values were obtained from t-tests and analysis of variance tests. We found that overall, participants (mean age: 53 years, range: 21-69; 52% female) had a total MICRA mean score of 18.6 (standard deviation: 11.1, range: 1-70; possible range: 0-105). The high genomic risk group had higher mean scores for the total (24.2, F2,100 = 6.7, P = 0.0019), distress (3.3, F2,100 = 9.4, P = 0.0002) and uncertainty (8.5, F2,100 = 6.5, P = 0.0021) subscales compared with average (17.6, 1.1, and 4.5, respectively) and low-risk groups (14.1, 0.5, and 2.5, respectively). Positive experiences scores were consistent across risk groups. In conclusion, MICRA scores for the total, distress and uncertainty subscales in our study were relatively low overall, but people who receive a high genomic risk result may benefit from increased support following testing.

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Year:  2018        PMID: 29706632      PMCID: PMC6057946          DOI: 10.1038/s41431-018-0145-z

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  26 in total

1.  How do I feel about the behavior? The interplay of affective associations with behaviors and cognitive beliefs as influences on physical activity behavior.

Authors:  Marc T Kiviniemi; Amy M Voss-Humke; April L Seifert
Journal:  Health Psychol       Date:  2007-03       Impact factor: 4.267

2.  Does personalized melanoma genomic risk information trigger conversations about skin cancer prevention and skin examination with family, friends and health professionals?

Authors:  A K Smit; L A Keogh; A J Newson; P N Butow; K Dunlop; R L Morton; J Kirk; D Espinoza; A E Cust
Journal:  Br J Dermatol       Date:  2017-07-20       Impact factor: 9.302

3.  A brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire.

Authors:  David Cella; Chanita Hughes; Amy Peterman; Chih-Hung Chang; Beth N Peshkin; Marc D Schwartz; Lari Wenzel; Amy Lemke; Alfred C Marcus; Caryn Lerman
Journal:  Health Psychol       Date:  2002-11       Impact factor: 4.267

4.  A new approach to assessing affect and the emotional implications of personal genomic testing for common disease risk.

Authors:  Suzanne C O'Neill; Kenneth P Tercyak; Chanza Baytop; Sharon Hensley Alford; Colleen M McBride
Journal:  Public Health Genomics       Date:  2015-01-21       Impact factor: 2.000

5.  The impact of the format of graphical presentation on health-related knowledge and treatment choices.

Authors:  Sarah T Hawley; Brian Zikmund-Fisher; Peter Ubel; Aleksandra Jancovic; Todd Lucas; Angela Fagerlin
Journal:  Patient Educ Couns       Date:  2008-08-27

6.  Patients' understanding of and responses to multiplex genetic susceptibility test results.

Authors:  Kimberly A Kaphingst; Colleen M McBride; Christopher Wade; Sharon Hensley Alford; Robert Reid; Eric Larson; Andreas D Baxevanis; Lawrence C Brody
Journal:  Genet Med       Date:  2012-07       Impact factor: 8.822

7.  Psychological and behavioural impact of returning personal results from whole-genome sequencing: the HealthSeq project.

Authors:  Saskia C Sanderson; Michael D Linderman; Sabrina A Suckiel; Randi Zinberg; Melissa Wasserstein; Andrew Kasarskis; George A Diaz; Eric E Schadt
Journal:  Eur J Hum Genet       Date:  2017-01-04       Impact factor: 4.246

8.  The relationship between health, education, and health literacy: results from the Dutch Adult Literacy and Life Skills Survey.

Authors:  Iris van der Heide; Jen Wang; Mariël Droomers; Peter Spreeuwenberg; Jany Rademakers; Ellen Uiters
Journal:  J Health Commun       Date:  2013

Review 9.  The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis.

Authors:  Gareth J Hollands; David P French; Simon J Griffin; A Toby Prevost; Stephen Sutton; Sarah King; Theresa M Marteau
Journal:  BMJ       Date:  2016-03-15

10.  Public preferences for communicating personal genomic risk information: a focus group study.

Authors:  Amelia K Smit; Louise A Keogh; Jolyn Hersch; Ainsley J Newson; Phyllis Butow; Gabrielle Williams; Anne E Cust
Journal:  Health Expect       Date:  2015-09-01       Impact factor: 3.377

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  8 in total

1.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

2.  A qualitative study exploring the consumer experience of receiving self-initiated polygenic risk scores from a third-party website.

Authors:  Kiara Lowes; Kennedy Borle; Lasse Folkersen; Jehannine Austin
Journal:  Eur J Hum Genet       Date:  2022-10-04       Impact factor: 5.351

3.  GP attitudes to and expectations for providing personal genomic risk information to the public: a qualitative study.

Authors:  Amelia K Smit; Ainsley J Newson; Louise Keogh; Megan Best; Kate Dunlop; Kylie Vuong; Judy Kirk; Phyllis Butow; Lyndal Trevena; Anne E Cust
Journal:  BJGP Open       Date:  2019-02-20

Review 4.  Genetic Testing for Parkinson Disease: Are We Ready?

Authors:  Lola Cook; Jeanine Schulze; Catherine Kopil; Tara Hastings; Anna Naito; Joanne Wojcieszek; Katelyn Payne; Roy N Alcalay; Christine Klein; Rachel Saunders-Pullman; Tatyana Simuni; Tatiana Foroud
Journal:  Neurol Clin Pract       Date:  2021-02

5.  Impute.me: An Open-Source, Non-profit Tool for Using Data From Direct-to-Consumer Genetic Testing to Calculate and Interpret Polygenic Risk Scores.

Authors:  Lasse Folkersen; Oliver Pain; Andrés Ingason; Thomas Werge; Cathryn M Lewis; Jehannine Austin
Journal:  Front Genet       Date:  2020-06-30       Impact factor: 4.599

6.  The Clinical and Psychosocial Outcomes for Women Who Received Unexpected Clinically Actionable Germline Information Identified through Research: An Exploratory Sequential Mixed-Methods Comparative Study.

Authors:  Laura E Forrest; Rowan Forbes Shepherd; Erin Tutty; Angela Pearce; Ian Campbell; Lisa Devereux; Alison H Trainer; Paul A James; Mary-Anne Young
Journal:  J Pers Med       Date:  2022-07-07

7.  Psychosocial outcomes following germline multigene panel testing in an ethnically and economically diverse cohort of patients.

Authors:  Julie O Culver; Charité N Ricker; Joseph Bonner; John Kidd; Duveen Sturgeon; Rachel Hodan; Kerry Kingham; Katrina Lowstuter; Nicolette M Chun; Alexandra P Lebensohn; Courtney Rowe-Teeter; Peter Levonian; Katlyn Partynski; Karlena Lara-Otero; Christine Hong; Jennifer Morales Pichardo; Meredith A Mills; Krystal Brown; Caryn Lerman; Uri Ladabaum; Kevin J McDonnell; James M Ford; Stephen B Gruber; Allison W Kurian; Gregory E Idos
Journal:  Cancer       Date:  2020-12-15       Impact factor: 6.921

8.  Impact of personal genomic risk information on melanoma prevention behaviors and psychological outcomes: a randomized controlled trial.

Authors:  Amelia K Smit; Martin Allen; Brooke Beswick; Phyllis Butow; Hugh Dawkins; Suzanne J Dobbinson; Kate L Dunlop; David Espinoza; Georgina Fenton; Peter A Kanetsky; Louise Keogh; Michael G Kimlin; Judy Kirk; Matthew H Law; Serigne Lo; Cynthia Low; Graham J Mann; Gillian Reyes-Marcelino; Rachael L Morton; Ainsley J Newson; Jacqueline Savard; Lyndal Trevena; Sarah Wordsworth; Anne E Cust
Journal:  Genet Med       Date:  2021-08-12       Impact factor: 8.822

  8 in total

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