Abstract
Purpose
Fear of cancer recurrence (FCR) is frequent in survivors, but less is known about FCR in long-term survivors with very low risk of relapse. Our aim was to estimate the prevalence and clinical and socio-behavioural factors associated with FCR in young women 5 years after diagnosis of a good-prognosis cancer.
Methods
Using data from the VICAN-5 survey, conducted in 2015–2016 amongst a national representative French sample of cancer survivors, we included women with non-metastatic melanoma, breast, or thyroid cancer, aged 55 years or under at diagnosis, who experienced no disease progression in the 5 years post-diagnosis. Multinomial logistic regression was used to identify factors associated with FCR, characterised using a three-level indicator: no, mild, and moderate/severe FCR.
Results
Amongst the 1153 women included, mean age was 44 years at diagnosis, and 81.8% had breast cancer, 12.5% thyroid cancer, and 5.8% melanoma. Five years after diagnosis, 35.4% reported no FCR, 46.0% mild FCR, and 18.6% moderate/severe FCR. Women with thyroid cancer were less likely to suffer from mild or moderate/severe FCR, while cancer-related treatment sequelae, fatigue, and anxiety were more likely. Limited health literacy was associated with mild FCR. Women who reported only occasionally consulting a general practitioner (GP) for the management of their cancer had a higher probability of FCR.
Conclusion
Moderate/severe FCR affected nearly 20% of young female long-term survivors diagnosed with a good-prognosis cancer, particularly those reporting cancer-related sequelae, suffering from fatigue or anxiety, with breast cancer or melanoma (versus thyroid cancer), and consulting a GP only occasionally for cancer management.
Implications for Cancer Survivors
Given the recognised impact of FCR on quality of life, it is essential to detect it as early as possible, and to implement targeted interventions in routine care.
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References
Bertuccio P, Alicandro G, Malvezzi M, Carioli G, Boffetta P, Levi F, La Vecchia C, Negri E. Cancer mortality in Europe in 2015 and an overview of trends since 1990. Ann Oncol. 2019;30(8):1356–69.
Loretti A. Healing: effects of class and gender on life after cancer treatment. Sociologie. 2019;10(3):267–83 (in French).
Lebel S, Ozakinci G, Humphris G, Mutsaers B, Thewes B, Prins J, et al. From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Support Care Cancer. 2016;24(8):3265–8. https://doi.org/10.1007/s00520-016-3272-5.
Fardell JE, Thewes B, Turner J, Gilchrist J, Sharpe L, Smith AB, et al. Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation. J Cancer Surviv. 2016;10(4):663–73. https://doi.org/10.1007/s11764-015-0512-5.
Smith AB, Sharpe L, Thewes B, Turner J, Gilchrist J, Fardell JE, et al. Medical, demographic and psychological correlates of fear of cancer recurrence (FCR) morbidity in breast, colorectal and melanoma cancer survivors with probable clinically significant FCR seeking psychological treatment through the ConquerFear study. Support Care Cancer. 2018;26(12):4207–16. https://doi.org/10.1007/s00520-018-4294-y.
Simonelli LE, Siegel SD, Duffy NM. Fear of cancer recurrence: a theoretical review and its relevance for clinical presentation and management. Psychooncology. 2017;26(10):144–1454. https://doi.org/10.1002/pon.4168.
Mutsaers B, Butow P, Dinkel A, Humphris G, Maheu C, Ozakinci G, et al. Identifying the key characteristics of clinical fear of cancer recurrence: an international Delphi study. Psychooncology. 2020;29(2):430–6. https://doi.org/10.1002/pon.5283.
Koch L, Jansen L, Brenner H, Arndt V. Fear of recurrence and disease progression in long-term (≥ 5 years) cancer survivors-a systematic review of quantitative studies. Psychooncology. 2013;22(1):1–11. https://doi.org/10.1002/pon.3022.
Smith AB, Costa D, Galica J, Lebel S, Tauber N, van Helmondt SJ, Zachariae R. Spotlight on the Fear of Cancer Recurrence Inventory (FCRI). Psychol Res Behav Manag. 2020;21(13):1257–68.
Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S, Ozakinci G. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv. 2013;7(3):300–22. https://doi.org/10.1007/s11764-013-0272-z.
Reed SC, Bell JF, Miglioretti DL, Nekhlyudov L, Fairman N, Joseph JG. Fear of cancer recurrence and associations with mental health status and individual characteristics among cancer survivors: findings from a nationally representative sample. J Psychosoc Oncol Mar-Apr. 2020;38(2):125–42. https://doi.org/10.1080/07347332.2019.1649338.
Fardell JE, Jones G, Smith AB, Lebel S, Thewes B, Costa D, et al. Exploring the screening capacity of the Fear of Cancer Recurrence Inventory-Short Form for clinical levels of fear of cancer recurrence. Psychooncology. 2018;27(2):492–9. https://doi.org/10.1002/pon.4516.
Tauber NM, O’Toole MS, Dinkel A, Galica J, Humphris G, Lebel S, et al. Effect of psychological intervention on fear of cancer recurrence: a systematic review and meta-analysis. J Clin Oncol. 2019;37(31):2899–915. https://doi.org/10.1200/JCO.19.00572.
Viscuse PV, Price K, Millstine D, Bhagra A, Bauer B, Ruddy KJ. Integrative medicine in cancer survivors. Curr Opin Oncol. 2017;29(4):235–42. https://doi.org/10.1097/CCO.0000000000000376.
Hall DL, Luberto CM, Philpotts LL, Song R, Park ER, Yeh GY. Mind-body interventions for fear of cancer recurrence: a systematic review and meta-analysis. Psychooncology. 2018;27(11):2546–58. https://doi.org/10.1002/pon.4757.
Thewes B, Butow P, Bell ML, Beith J, Stuart-Harris R, Grossi M, Capp A, Dalley D, FCR Study Advisory Committee. Fear of cancer recurrence in young women with a history of early-stage breast cancer: a cross-sectional study of prevalence and association with health behaviours. Support Care Cancer. 2012;20(11):2651–9. https://doi.org/10.1007/s00520-011-1371-x.
Pang C, Humphris G. The relationship between fears of cancer recurrence and patient gender: a systematic review and meta-analysis. Front Psychol. 2021;22(12):640866. https://doi.org/10.3389/fpsyg.2021.640866.
Koch-Gallenkamp L, Bertram H, Eberle A, Holleczek B, Schmid-Höpfner S, Waldmann A, et al. Fear of recurrence in long-term cancer survivors-do cancer type, sex, time since diagnosis, and social support matter? Health Psychol. 2016;35(12):1329–33. https://doi.org/10.1037/hea0000374.
Luigjes Y, Van der Lee M, Tauber N, Helsper C. Prevalence of fear of cancer recurrence in cancer patients and survivors: a systematic review and IPD-analysis. PROSPERO 2020 CRD42020142185. https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020142185.
Lim E, Humphris G. The relationship between fears of cancer recurrence and patient age: a systematic review and meta-analysis. Meta-Analysis Cancer Rep (Hoboken). 2020;3(3):e1235. https://doi.org/10.1002/cnr2.1235.
Lebel S, Beattie S, Ares I, Bielajew C. Young and worried: age and fear of recurrence in breast cancer survivors. Health Psychol. 2013;32(6):695–705.
Thewes B, Bell ML, Butow P, Beith J, Boyle F, Friedlander M, et al. Psychological morbidity and stress but not social factors influence level of fear of cancer recurrence in young women with early breast cancer: results of a cross-sectional study. Psychooncology. 2013;22(12):2797–806. https://doi.org/10.1002/pon.3348.
Koch L, Bertram H, Eberle A, Holleczek B, Schmid-Höpfner S, Waldmann A, et al. Fear of recurrence in long-term breast cancer survivors-still an issue. Results on prevalence, determinants, and the association with quality of life and depression from the cancer survivorship–a multi-regional population-based study. Psychooncology. 2014;23(5):547–54. https://doi.org/10.1002/pon.3452.
French cancer plan 2009–2013. https://www.e-cancer.fr/Institut-national-du-cancer/Strategie-de-lutte-contre-les-cancers-en-France/Les-Plans-cancer/Le-Plan-cancer-2009-2013. Accessed 28 Feb 2022.
French ten-year cancer control strategy 2021–2030. Stratégie décennale de lutte contre les cancers 2021 - 2030. https://solidarites-sante.gouv.fr/IMG/pdf/feuille_de_route_-_strategie_decennale_de_lutte_contre_les_cancers.pdf. Accessed 28 Feb 2022.
Tuppin P, de Roquefeuil L, Weill A, Ricordeau P, Merlière Y. French national health insurance information system and the permanent beneficiaries’ sample. Rev Epidemiol Sante Publique. 2010;58(4):286–90. https://doi.org/10.1016/j.respe.2010.04.005.
Bouhnik AD, Bendiane MK, Cortaredona S, SagaonTeyssier L, Rey D, Berenger C, et al. The labour market, psychosocial outcomes and health conditions in cancer survivors: protocol for a nationwide longitudinal survey 2 and 5 years after cancer diagnosis (the VICAN survey). BMJ Open. 2015;5:e005971.
Horner MJ et coll. SEER Cancer Statistics Review, 1975–2006, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2006/, based on November 2008 SEER data submission, posted to the SEER web site, 2009. Accessed 28 Feb 2022.
Simard S, Savard J. Fear of Cancer Recurrence Inventory: development and initial validation of a multidimensional measure of fear of cancer recurrence. Support Care Cancer. 2009;17(3):241–51. https://doi.org/10.1007/s00520-008-0444-y.
Morris NS, MacLean CD, Chew LD, et al. The Single Item Literacy Screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Pract. 2006;7:21. https://doi.org/10.1186/1471-2296-7-21.
Powers BJ, Trinh JV, Bosworth HB. Can this patient read and understand written health information? JAMA. 2010;304(1):76–84. https://doi.org/10.1001/jama.2010.896.
Dickens C, Lambert BL, Cromwell T, Piano MR. Nurse overestimation of patients’ health literacy. J Health Commun. 2013;18(Suppl 1):62–9. https://doi.org/10.1080/10810730.2013.825670.
Hopwood P, Fletcher I, Lee A, Al GS. A body image scale for use with cancer patients. Eur J Cancer. 2001;37(2):189–97. https://doi.org/10.1016/s0959-8049(00)00353-1.
Berglund G, Nystedt M, Bolund C, Sjödén PO, Rutquist LE. Effect of endocrine treatment on sexuality in premenopausal breast cancer patients: a prospective randomized study. J Clin Oncol. 2001;19(11):2788–96.
Groenvold M, Klee MC, Sprangers MA, Aaronson NK. Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreement. J Clin Epidemiol. 1997;50:441–50.
Burdine JN, Felix MR, Abel AL, et al. The SF-12 as a population health measure: an exploratory examination of potential for application. Health Serv Res. 2000;35:885–904.
Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.
Mehnert A, Berg P, Henrich G, Herschbach P. Fear of cancer progression and cancer-related intrusive cognitions in breast cancer survivors. Psychooncology. 2009;18(12):1273–80. https://doi.org/10.1002/pon.1481 PMID: 19267364.
Bjørklund Ellegaard MB, Grau C, Zachariae R, Jensen AB. Fear of cancer recurrence and unmet needs among breast cancer survivors in the first five years. A cross-sectional study Acta Oncol. 2017;56(2):314–20. https://doi.org/10.1080/0284186X.2016.1268714.
Heidkamp P, Breidenbach C, Hiltrop K, Kowalski C, Enders A, Pfaff H, et al. Individual courses and determinants of fear of cancer recurrence in long-term breast cancer survivors with and without recurrence. Support Care Cancer. 2021. https://doi.org/10.1007/s00520-021-06329-z.
Cunningham SJ, Patton M, Schulte F, Richardson PA, Heathcote LC. Worry about somatic symptoms as a sign of cancer recurrence: prevalence and associations with fear of recurrence and quality of life in survivors of childhood cancer. Psychooncology. 2021;30(7):1077–85. https://doi.org/10.1002/pon.5647.
Thewes B, Bell ML, Butow P, Beith J, Boyle F, Friedlander M, McLachlan SA, Members of the FCR Study Advisory Committee. Psychological morbidity and stress but not social factors influence level of fear of cancer recurrence in young women with early breast cancer: results of a cross-sectional study. Psychooncology. 2013;22(12):2797–806. https://doi.org/10.1002/pon.3348.
Hedman C, Strang P, Djärv T, Widberg I, Lundgren CI. Anxiety and fear of recurrence despite a good prognosis: an interview study with differentiated thyroid cancer patients. Thyroid. 2017;27(11):1417–23.
Beutel ME, Fischbeck S, Binder H, Blettner M, Brähler E, Emrich K, Friedrich-Mai P, Imruck BH, Weyer V, Zeissig SR. Depression, anxiety and quality of life in long-term survivors of malignant melanoma: a register-based cohort study. PLoS ONE. 2015;10(1):e0116440. https://doi.org/10.1371/journal.pone.0116440.
Krok-Schoen JL, Naughton MJ, Bernardo BM, Young GS, Paskett ED. Fear of recurrence among older breast, ovarian, endometrial, and colorectal cancer survivors: Findings from the WHI LILAC study. Psychooncology. 2018;27(7):1810–5. https://doi.org/10.1002/pon.4731.
Defossez G, Le Guyader-Peyrou S, Uhry Z, Grosclaude P, Colonna M, Dantony E, et al. Estimations nationales de l’incidence et de la mortalité par cancer en France métropolitaine entre 1990 et 2018. Synthèse: Santé publique France, Saint-Maurice; 2019. p. 20. http://www.santepubliquefrance.fr/. Accessed 28 Feb 2022.
Lane BE, Garland SN, Chalifour K, Eaton G, Lebel S, Galica J, Maheu C, Simard S. Prevalence and factors associated with fear of recurrence in a mixed sample of young adults with cancer. J Cancer Surviv. 2019;13(6):842–51. https://doi.org/10.1007/s11764-019-00802-9.
Giannakeas V, Lim DW, Narod SA. The risk of contralateral breast cancer: a SEER-based analysis. Br J Cancer. 2021;125(4):601–10. https://doi.org/10.1038/s41416-021-01417-7.
de Lorenzo F, Apostolidis K. The European Cancer Patient Coalition and its central role in connecting stakeholders to advance patient-centric solutions in the mission on cancer. Mol Oncol. 2019;13(3):653–66. https://doi.org/10.1002/1878-0261.12448.
Clarke N, Dunne S, Coffey L, Sharp L, Desmond D, O’Conner J, et al. Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors. J Cancer Surviv. 2021. https://doi.org/10.1007/s11764-020-00978-5.
Halbach SM, Enders A, Kowalski C, Timo-Kolja P, Pfaff, Wesselmann S, Ernstmann N. Health literacy and fear of cancer progression in elderly women newly diagnosed with breast cancer - a longitudinal analysis. Patient Educ Couns. 2016;99(5):855–62.
Koay K, Schofield P, Jefford M. Importance of health literacy in oncology. Asia-Pacific J Clin Oncol. 2012;8:14–23. https://doi.org/10.1111/j.1743-7563.2012.01522.x.
Nakata H, Halbach S, Geiser F, Stock S, Kowalski C, Enders A, Pfaff H, Nicole EN. Health literacy, mental disorders and fear of progression and their association with a need for psycho-oncological care over the course of a breast cancer treatment. Psychol Health Med. 2021;26(7):818–31. https://doi.org/10.1080/13548506.2020.1772987.
Williams JTW, Pearce A, Smith AB. A systematic review of fear of cancer recurrence related healthcare use and intervention cost-effectiveness. Psychooncology. 2021. https://doi.org/10.1002/pon.5673.
Otto AK, Soriano EC, Siegel SD, LoSavio ST, Laurenceau JP. Assessing the relationship between fear of cancer recurrence and health care utilization in early-stage breast cancer survivors. J Cancer Surviv. 2018;12(6):775–85. https://doi.org/10.1007/s11764-018-0714-8.
Jung HP, Baerveldt C, Olesen F, Grol R, Wensing M. Patient characteristics as predictors of primary health care preferences: a systematic literature analysis. Health Expect. 2003;6(2):160–81. https://doi.org/10.1046/j.1369-6513.2003.00221.x (PMID: 127527).
Absolom K, Eiser C, Michel G, Walters SJ, Hancock BW, Coleman RE, et al. Follow-up care for cancer survivors: views of the younger adult. Br J Cancer. 2009;101(4):561–7.
Laporte C, Vaure J, Bottet A, Eschalier B, Raineau C, Pezet D, Vorilhon P. French women’s representations and experiences of the post-treatment management of breast cancer and their perception of the general practitioner’s role in follow-up care: a qualitative study. Health Expect. 2017;20(4):788–96. https://doi.org/10.1111/hex.12518.
Murchie P, Norwood PF, Pietrucin-Materek M, Porteous T, Hannaford PC, Ryan M. Determining cancer survivors’ preferences to inform new models of follow-up care. Br J Cancer. 2016;115(12):1495–503. https://doi.org/10.1038/bjc.2016.352.
Deckx L, Chow KH, Askew D, van Driel ML, Mitchell GK, van den Akker M. Psychosocial care for cancer survivors: a systematic literature review on the role of general practitioners. Psychooncology. 2021;30:444–54. https://doi.org/10.1002/pon.5612.
Hart NH, Smith AB, Hobbs K, Thamm C, Gordon LG, Crichton M, et al. Juggling cancer and life in survivorship: the role of general practitioners. Aust J Gen Pract. 2021;50(8):520–5. https://doi.org/10.31128/ajgp-04-21-5938.
Jefford M, Koczwara B, Emery J, Thornton-Benko E, Vardy JL. The important role of general practice in the care of cancer survivors. Aust J Gen Pract. 2020;49(5):288–92. https://doi.org/10.31128/AJGP-10-19-5133.
Roorda C, Berendsen AJ, Groenhof F, van der Meer K, de Bock GH. Increased primary healthcare utilization among women with a history of breast cancer. Support Care Cancer. 2013;21(4):941–9. https://doi.org/10.1007/s00520-012-1609-2.
Liu J, Butow P, Bui KT, Serafimovska A, Costa DSJ, Kiely BE et al. Novel clinician-lead intervention to address fear of cancer recurrence in breast cancer survivors. JCO Oncol Pract. 2021:OP.20.00799. https://doi.org/10.1200/OP.20.00799.
Liu JJ, Butow P, Beith J. Systematic review of interventions by non-mental health specialists for managing fear of cancer recurrence in adult cancer survivors. Support Care Cancer. 2019. https://doi.org/10.1007/s00520-019-04979-8.
Rudy L, Maheu C, Körner A, Lebel S, Gélinas C. The FCR-1: initial validation of a single-item measure of fear of cancer recurrence. Psychooncology. 2020;29:788–95. https://doi.org/10.1002/pon.5350.
Smith AB. Integrating fear of cancer recurrence screening into routine care: opportunities and challenges. Psychooncology. 2021;30(1):134–7. https://doi.org/10.1002/pon.5558.
Fisher GG, Matthews RA, Gibbons AM. Developing and investigating the use of single-item measures in organizational research. J Occup Health Psychol. 2016;21(1):3–23. https://doi.org/10.1037/a0039139.
Costa DSJ, Smith AB, Fardell JE. The sum of all fears: conceptual challenges with measuring fear of cancer recurrence. Support Care Cancer. 2016;24(1):1–3. https://doi.org/10.1007/s00520-015-2943-y.
Funding
The VICAN survey was funded by The National Institute of Cancer (INCa) ‘Contrat de recherche et développement N° 05–2011’.
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All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Anne-Déborah Bouhnik, Julien Mancini, and Marc-Karim Bendiane. The first draft of the manuscript was written by Clément Magnani, Dominique Rey, and Anne-Déborah Bouhnik, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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The methods used were approved by three national ethics commissions: the CCTIRS (French Advisory Committee on the Processing of Information in the Field of Health Research, study registered under n°11–143), the ISP (Institute of Public Health, study registered under n°C11-63), and the CNIL (French Commission on Individual Data Protection and Public Liberties, study registered under n°911290).
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Magnani, C., Smith, A., Rey, D. et al. Fear of cancer recurrence in young women 5 years after diagnosis with a good-prognosis cancer: the VICAN-5 national survey. J Cancer Surviv 17, 1359–1370 (2023). https://doi.org/10.1007/s11764-022-01193-0
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DOI: https://doi.org/10.1007/s11764-022-01193-0