Skip to main content
Top
Published in: Supportive Care in Cancer 12/2021

01-12-2021 | Anxiety | Original Article

Fear of cancer recurrence in patients undergoing germline genome sequencing

Authors: Nicci Bartley, Grace Davies, Phyllis Butow, Christine E. Napier, Tim Schlub, Mandy L. Ballinger, David M. Thomas, Ilona Juraskova, Bettina Meiser, Megan C. Best

Published in: Supportive Care in Cancer | Issue 12/2021

Login to get access

Abstract

Purpose

Fear of cancer recurrence/occurrence (FCR/O) is prevalent and associated with poorer psychological outcomes but can also motivate individuals to pursue genomic information about cancer risk. Guided by Protection Motivation Theory, this study investigated FCR/O prevalence and associated factors among probands previously diagnosed with a cancer of likely heritable origin, and their relatives, who had agreed to have germline genome sequencing.

Methods

Three hundred and forty-eight probands and 167 relatives completed the Concerns about Recurrence Questionnaire (adapted for occurrence for some relatives) within 1 month of agreeing to undertake genome sequencing. Linear regressions investigated demographic, disease, attitude and behavioral associations with FCR/O.

Results

Probands demonstrated greater FCR compared to relatives. In probands, greater FCR was associated with being female, non-English speaking at home, less time since diagnosis, greater intention to change behavior if gene variant found, lower perceived ability to cope with results, higher perceived susceptibility to having a recurrence, and more negative attitudes towards uncertainty. For relatives with cancer, greater FCR was associated with being male, greater intention to change behavior if a gene variant found, and higher perceived susceptibility to recurrence. In relatives without cancer, greater FCO was associated with not having had genetic testing prior to this study, lower perceived ability to cope with results, and higher perceived susceptibility to developing cancer.

Conclusion

Current findings on FCR/O prevalence and associated demographic and attitudinal variables in those who pursue genomic risk information might be used to target interventions that can prevent adverse psychological outcomes in vulnerable patients.
Literature
1.
go back to reference Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S et al (2013) Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv 7(3):300–322CrossRef Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S et al (2013) Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv 7(3):300–322CrossRef
2.
go back to reference Mellon S, Gold R, Janisse J, Cichon M, Tainsky MA, Simon MS et al (2008) Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psychooncology 17(8):756–766CrossRef Mellon S, Gold R, Janisse J, Cichon M, Tainsky MA, Simon MS et al (2008) Risk perception and cancer worries in families at increased risk of familial breast/ovarian cancer. Psychooncology 17(8):756–766CrossRef
3.
go back to reference Lebel S, Maheu C, Tomei C, Bernstein LJ, Courbasson C, Ferguson S et al (2018) Towards the validation of a new, blended theoretical model of fear of cancer recurrence. Psychooncology 27(11):2594–2601CrossRef Lebel S, Maheu C, Tomei C, Bernstein LJ, Courbasson C, Ferguson S et al (2018) Towards the validation of a new, blended theoretical model of fear of cancer recurrence. Psychooncology 27(11):2594–2601CrossRef
4.
go back to reference Thewes B, Meiser B, Hickie IB (2001) Psychometric properties of the impact of event scale amongst women at increased risk for hereditary breast cancer. Psychooncology 10(6):459–468CrossRef Thewes B, Meiser B, Hickie IB (2001) Psychometric properties of the impact of event scale amongst women at increased risk for hereditary breast cancer. Psychooncology 10(6):459–468CrossRef
5.
go back to reference Meiser B, Butow P, Friedlander M, Barratt A, Schnieden V, Watson M et al (2002) Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer 38(15):2025–2031CrossRef Meiser B, Butow P, Friedlander M, Barratt A, Schnieden V, Watson M et al (2002) Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer 38(15):2025–2031CrossRef
6.
go back to reference Lloyd S, Watson M, Waites B, Meyer L, Eeles R, Ebbs S et al (1996) Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling. Br J Cancer 74(3):482–487CrossRef Lloyd S, Watson M, Waites B, Meyer L, Eeles R, Ebbs S et al (1996) Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling. Br J Cancer 74(3):482–487CrossRef
7.
go back to reference McGinty HL, Small BJ, Laronga C, Jacobsen PB (2016) Predictors and patterns of fear of cancer recurrence in breast cancer survivors. Health Psychol 35(1):1–9CrossRef McGinty HL, Small BJ, Laronga C, Jacobsen PB (2016) Predictors and patterns of fear of cancer recurrence in breast cancer survivors. Health Psychol 35(1):1–9CrossRef
8.
go back to reference Li J, Hart TL, Aronson M, Crangle C, Govindarajan A (2016) Cancer worry, perceived risk and cancer screening in first-degree relatives of patients with familial gastric cancer. J Genet Couns 25(3):520–528CrossRef Li J, Hart TL, Aronson M, Crangle C, Govindarajan A (2016) Cancer worry, perceived risk and cancer screening in first-degree relatives of patients with familial gastric cancer. J Genet Couns 25(3):520–528CrossRef
9.
go back to reference Lerman C, Hughes C, Lemon SJ, Main D, Snyder C, Durham C et al (1998) What you don’t know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. J Clin Oncol: Off J Am Soc Clin Oncol 16(5):1650–1654CrossRef Lerman C, Hughes C, Lemon SJ, Main D, Snyder C, Durham C et al (1998) What you don’t know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. J Clin Oncol: Off J Am Soc Clin Oncol 16(5):1650–1654CrossRef
10.
go back to reference Flores KG, Steffen LE, McLouth CJ, Vicuna BE, Gammon A, Kohlmann W et al (2017) Factors associated with interest in gene-panel testing and risk communication preferences in women from BRCA1/2 negative families. J Genet Couns 26(3):480–490CrossRef Flores KG, Steffen LE, McLouth CJ, Vicuna BE, Gammon A, Kohlmann W et al (2017) Factors associated with interest in gene-panel testing and risk communication preferences in women from BRCA1/2 negative families. J Genet Couns 26(3):480–490CrossRef
11.
go back to reference Lynce F, Isaacs C (2016) How far do we go with genetic evaluation? gene, panel, and tumor testing. Am Soc Clin Oncol Educ Book 36:e72–e78CrossRef Lynce F, Isaacs C (2016) How far do we go with genetic evaluation? gene, panel, and tumor testing. Am Soc Clin Oncol Educ Book 36:e72–e78CrossRef
12.
go back to reference Maddux JE, Rogers RW (1983) Protection motivation and self-efficacy: a revised theory of fear appeals and attitude change. J Exp Soc Psychol 19(5):469–479CrossRef Maddux JE, Rogers RW (1983) Protection motivation and self-efficacy: a revised theory of fear appeals and attitude change. J Exp Soc Psychol 19(5):469–479CrossRef
13.
go back to reference Fardell JE, Thewes B, Turner J, Gilchrist J, Sharpe L, Smith A et al (2016) Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation. J Cancer Surviv 10(4):663–673CrossRef Fardell JE, Thewes B, Turner J, Gilchrist J, Sharpe L, Smith A et al (2016) Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation. J Cancer Surviv 10(4):663–673CrossRef
14.
go back to reference Kalia SS, Adelman K, Bale SJ, Chung WK, Eng C, Evans JP et al (2017) Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics. Genet Med 19(2):249–55CrossRef Kalia SS, Adelman K, Bale SJ, Chung WK, Eng C, Evans JP et al (2017) Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics. Genet Med 19(2):249–55CrossRef
15.
go back to reference Best M, Newson AJ, Meiser B, Juraskova I, Goldstein D, Tucker K et al (2018) The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer. BMC Cancer 18(1):454CrossRef Best M, Newson AJ, Meiser B, Juraskova I, Goldstein D, Tucker K et al (2018) The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer. BMC Cancer 18(1):454CrossRef
16.
go back to reference Thewes B, Zachariae R, Christensen S, Nielsen T, Butow P (2015) The concerns about recurrence questionnaire: validation of a brief measure of fear of cancer recurrence amongst Danish and Australian breast cancer survivors. J Cancer Surviv 9(1):68–79CrossRef Thewes B, Zachariae R, Christensen S, Nielsen T, Butow P (2015) The concerns about recurrence questionnaire: validation of a brief measure of fear of cancer recurrence amongst Danish and Australian breast cancer survivors. J Cancer Surviv 9(1):68–79CrossRef
17.
go back to reference Holmes-Rovner M, Kroll J, Schmitt N, Rovner DR, Breer ML, Rothert ML et al (1996) Patient satisfaction with health care decisions: the satisfaction with decision scale. Med Decis Making 16(1):58–64CrossRef Holmes-Rovner M, Kroll J, Schmitt N, Rovner DR, Breer ML, Rothert ML et al (1996) Patient satisfaction with health care decisions: the satisfaction with decision scale. Med Decis Making 16(1):58–64CrossRef
18.
go back to reference Rosenberg SM, Tracy MS, Meyer ME, Sepucha K, Gelber S, Hirshfield-Bartek J et al (2013) Perceptions, knowledge, and satisfaction with contralateral prophylactic mastectomy among young women with breast cancer: a cross-sectional survey. Ann Intern Med 159(6):373–381CrossRef Rosenberg SM, Tracy MS, Meyer ME, Sepucha K, Gelber S, Hirshfield-Bartek J et al (2013) Perceptions, knowledge, and satisfaction with contralateral prophylactic mastectomy among young women with breast cancer: a cross-sectional survey. Ann Intern Med 159(6):373–381CrossRef
19.
go back to reference Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ (2009) Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med 11(4):265–278CrossRef Kasparian NA, Meiser B, Butow PN, Simpson JM, Mann GJ (2009) Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genet Med 11(4):265–278CrossRef
20.
go back to reference Braithwaite D, Sutton S, Steggles N (2002) Intention to participate in predictive genetic testing for hereditary cancer: the role of attitude toward uncertainty. Psychol Health 17(6):761–772CrossRef Braithwaite D, Sutton S, Steggles N (2002) Intention to participate in predictive genetic testing for hereditary cancer: the role of attitude toward uncertainty. Psychol Health 17(6):761–772CrossRef
21.
go back to reference Butow P, Shaw J, Vaccaro L, Sharpe L, Dhillon H, Smith B et al (2019) A research agenda for fear of cancer recurrence: a Delphi study conducted in Australia. Psychooncology 28(5):989–996CrossRef Butow P, Shaw J, Vaccaro L, Sharpe L, Dhillon H, Smith B et al (2019) A research agenda for fear of cancer recurrence: a Delphi study conducted in Australia. Psychooncology 28(5):989–996CrossRef
22.
go back to reference SéguinLeclair C, Lebel S, Westmaas JL (2019) The relationship between fear of cancer recurrence and health behaviors: a nationwide longitudinal study of cancer survivors. Health Psychol 38(7):596–605CrossRef SéguinLeclair C, Lebel S, Westmaas JL (2019) The relationship between fear of cancer recurrence and health behaviors: a nationwide longitudinal study of cancer survivors. Health Psychol 38(7):596–605CrossRef
23.
go back to reference Wu LM, McGinty H, Amidi A, Bovbjerg K, Diefenbach MA (2019) Longitudinal dyadic associations of fear of cancer recurrence and the impact of treatment in prostate cancer patients and their spouses. Acta Oncol (Stockholm, Sweden) 58(5):708–714CrossRef Wu LM, McGinty H, Amidi A, Bovbjerg K, Diefenbach MA (2019) Longitudinal dyadic associations of fear of cancer recurrence and the impact of treatment in prostate cancer patients and their spouses. Acta Oncol (Stockholm, Sweden) 58(5):708–714CrossRef
24.
go back to reference Koch-Gallenkamp L, Bertram H, Eberle A, Holleczek B, Schmid-Hopfner S, Waldmann A et al (2016) Fear of recurrence in long-term cancer survivors-do cancer type, sex, time since diagnosis, and social support matter? Health Psychol 35(12):1329–1333CrossRef Koch-Gallenkamp L, Bertram H, Eberle A, Holleczek B, Schmid-Hopfner S, Waldmann A et al (2016) Fear of recurrence in long-term cancer survivors-do cancer type, sex, time since diagnosis, and social support matter? Health Psychol 35(12):1329–1333CrossRef
25.
go back to reference Vrinten C, McGregor LM, Heinrich M, von Wagner C, Waller J, Wardle J et al (2017) What do people fear about cancer? A systematic review and meta-synthesis of cancer fears in the general population. Psychooncology 26(8):1070–1079CrossRef Vrinten C, McGregor LM, Heinrich M, von Wagner C, Waller J, Wardle J et al (2017) What do people fear about cancer? A systematic review and meta-synthesis of cancer fears in the general population. Psychooncology 26(8):1070–1079CrossRef
26.
27.
go back to reference Smit AK, Bartley N, Best MC, Napier CE, Butow P, Newson AJ, Tucker K, Ballinger ML, Thomas DM, Jacobs C, Meiser B, Goldstein D, Savard J, Juraskova I, PiGeOn authorship group (2021) Family communication about genomic sequencing: a qualitative study with cancer patients and relatives. Patient Educ Couns 104(5):944–952. https://doi.org/10.1016/j.pec.2020.10.022 Smit AK, Bartley N, Best MC, Napier CE, Butow P, Newson AJ, Tucker K, Ballinger ML, Thomas DM, Jacobs C, Meiser B, Goldstein D, Savard J, Juraskova I, PiGeOn authorship group (2021) Family communication about genomic sequencing: a qualitative study with cancer patients and relatives. Patient Educ Couns 104(5):944–952. https://​doi.​org/​10.​1016/​j.​pec.​2020.​10.​022
28.
go back to reference Luckett T, Goldstein D, Butow PN, Gebski V, Aldridge LJ, McGrane J et al (2011) Psychological morbidity and quality of life of ethnic minority patients with cancer: a systematic review and meta-analysis. Lancet Oncol 12(13):1240–1248CrossRef Luckett T, Goldstein D, Butow PN, Gebski V, Aldridge LJ, McGrane J et al (2011) Psychological morbidity and quality of life of ethnic minority patients with cancer: a systematic review and meta-analysis. Lancet Oncol 12(13):1240–1248CrossRef
29.
go back to reference Freeman-Gibb LA, Janz NK, Katapodi MC, Zikmund-Fisher BJ, Northouse L (2017) The relationship between illness representations, risk perception and fear of cancer recurrence in breast cancer survivors. Psychooncology 26(9):1270–1277CrossRef Freeman-Gibb LA, Janz NK, Katapodi MC, Zikmund-Fisher BJ, Northouse L (2017) The relationship between illness representations, risk perception and fear of cancer recurrence in breast cancer survivors. Psychooncology 26(9):1270–1277CrossRef
30.
go back to reference Kelly KM, Ajmera M, Bhattacharjee S, Vohra R, Hobbs G, Chaudhary L et al (2013) Perception of cancer recurrence risk: more information is better. Patient Educ Couns 90(3):361–366CrossRef Kelly KM, Ajmera M, Bhattacharjee S, Vohra R, Hobbs G, Chaudhary L et al (2013) Perception of cancer recurrence risk: more information is better. Patient Educ Couns 90(3):361–366CrossRef
31.
go back to reference Tilburt JC, James KM, Sinicrope PS, Eton DT, Costello BA, Carey J et al (2011) Factors influencing cancer risk perception in high risk populations: a systematic review. Hered Cancer Clin Pract 9(1):2CrossRef Tilburt JC, James KM, Sinicrope PS, Eton DT, Costello BA, Carey J et al (2011) Factors influencing cancer risk perception in high risk populations: a systematic review. Hered Cancer Clin Pract 9(1):2CrossRef
32.
go back to reference Yanes T, Willis AM, Meiser B, Tucker KM, Best M (2019) Psychosocial and behavioral outcomes of genomic testing in cancer: a systematic review. Eur J Hum Genet 27(1):28–35CrossRef Yanes T, Willis AM, Meiser B, Tucker KM, Best M (2019) Psychosocial and behavioral outcomes of genomic testing in cancer: a systematic review. Eur J Hum Genet 27(1):28–35CrossRef
33.
go back to reference Graves KD, Leventhal K-G, Nusbaum R, Salehizadeh Y, Hooker GW, Peshkin BN et al (2013) Behavioral and psychosocial responses to genomic testing for colorectal cancer risk. Genomics 102(2):123–130CrossRef Graves KD, Leventhal K-G, Nusbaum R, Salehizadeh Y, Hooker GW, Peshkin BN et al (2013) Behavioral and psychosocial responses to genomic testing for colorectal cancer risk. Genomics 102(2):123–130CrossRef
34.
go back to reference Simonelli LE, Siegel SD, Duffy NM (2017) Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management. Psychooncology 26(10):1444–1454CrossRef Simonelli LE, Siegel SD, Duffy NM (2017) Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management. Psychooncology 26(10):1444–1454CrossRef
35.
go back to reference Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E (2004) Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Couns 55(2):265–274CrossRef Claes E, Denayer L, Evers-Kiebooms G, Boogaerts A, Legius E (2004) Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact. Patient Educ Couns 55(2):265–274CrossRef
36.
go back to reference Sanderson SC, Wardle J (2008) Associations between anticipated reactions to genetic test results and interest in genetic testing: Will Self-Selection Reduce the Potential for Harm? Genet Test 12(1):59–66CrossRef Sanderson SC, Wardle J (2008) Associations between anticipated reactions to genetic test results and interest in genetic testing: Will Self-Selection Reduce the Potential for Harm? Genet Test 12(1):59–66CrossRef
37.
go back to reference Hollands GJ, French DP, Griffin SJ, Prevost AT, Sutton S, King S et al (2016) The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis. BMJ 352:i1102CrossRef Hollands GJ, French DP, Griffin SJ, Prevost AT, Sutton S, King S et al (2016) The impact of communicating genetic risks of disease on risk-reducing health behaviour: systematic review with meta-analysis. BMJ 352:i1102CrossRef
38.
go back to reference Smit AK, Espinoza D, Newson AJ, Morton RL, Fenton G, Freeman L et al (2017) A pilot randomized controlled trial of the feasibility, acceptability, and impact of giving information on personalized genomic risk of melanoma to the public. Cancer Epidemiol Biomarkers Prev: Publ Am Assoc Cancer Res Am Soc Prev Oncol 26(2):212–221CrossRef Smit AK, Espinoza D, Newson AJ, Morton RL, Fenton G, Freeman L et al (2017) A pilot randomized controlled trial of the feasibility, acceptability, and impact of giving information on personalized genomic risk of melanoma to the public. Cancer Epidemiol Biomarkers Prev: Publ Am Assoc Cancer Res Am Soc Prev Oncol 26(2):212–221CrossRef
39.
go back to reference Hawkins NA, Smith T, Zhao L, Rodriguez J, Berkowitz Z, Stein KD (2010) Health-related behavior change after cancer: results of the American cancer society’s studies of cancer survivors (SCS). J Cancer Surviv 4(1):20–32CrossRef Hawkins NA, Smith T, Zhao L, Rodriguez J, Berkowitz Z, Stein KD (2010) Health-related behavior change after cancer: results of the American cancer society’s studies of cancer survivors (SCS). J Cancer Surviv 4(1):20–32CrossRef
40.
go back to reference Peterson SK, Pentz RD, Marani SK, Ward PA, Blanco AM, LaRue D et al (2008) Psychological functioning in persons considering genetic counseling and testing for Li-Fraumeni syndrome. Psychooncology 17(8):783–789CrossRef Peterson SK, Pentz RD, Marani SK, Ward PA, Blanco AM, LaRue D et al (2008) Psychological functioning in persons considering genetic counseling and testing for Li-Fraumeni syndrome. Psychooncology 17(8):783–789CrossRef
Metadata
Title
Fear of cancer recurrence in patients undergoing germline genome sequencing
Authors
Nicci Bartley
Grace Davies
Phyllis Butow
Christine E. Napier
Tim Schlub
Mandy L. Ballinger
David M. Thomas
Ilona Juraskova
Bettina Meiser
Megan C. Best
Publication date
01-12-2021
Publisher
Springer Berlin Heidelberg
Keyword
Anxiety
Published in
Supportive Care in Cancer / Issue 12/2021
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-021-06311-9

Other articles of this Issue 12/2021

Supportive Care in Cancer 12/2021 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine