Abstract
Purpose
Fear of cancer recurrence (FCR) is a common experience for cancer survivors. However, it remains unclear what characteristics differentiate non-clinical from clinical levels of FCR. The goal of this study was to investigate the potential hallmarks of clinical FCR.
Methods
A convenience sample of 40 participants (n = 19 female) was drawn from another study (Lebel et al. in Qual Life Res 25:311–321. doi: 10.1007/s11136-015-1088-2, 2016). The semi-structured interview for fear of cancer recurrence (Simard and Savard in J Cancer Surviv 9:481–491. doi:10.1007/s11764-015-0424-4, 2015) was used to identify participants with non-clinical and clinical FCR and qualitative analysis of these interviews was performed.
Results
Individuals with clinical FCR reported the following features: death-related thoughts, feeling alone, belief that the cancer would return, experiencing intolerance of uncertainty, having cancer-related thoughts and imagery that were difficult to control, daily and recurrent, lasted 30 minutes or more, increased over time, caused distress and impacted their daily life. Triggers of FCR and coping strategies did not appear to be features of clinical FCR as they were reported by participants with a range of FCR scores.
Conclusions
While features of clinical FCR found in this analysis such as intrusive thoughts, distress and impact on functioning confirmed previous FCR research, other features spontaneously emerged from the interviews including “death-related thoughts,” “feeling alone,” and “belief that the cancer will return.” The participants’ descriptions of cancer-specific fear and worry suggest that FCR is a distinct phenomenon related to cancer survivorship, despite similarities with psychological disorders (e.g., Anxiety Disorders). Future research investigating the construct of FCR, and the distinguishing features of clinical FCR across a range of cancer types and gender is required.
Similar content being viewed by others
Notes
When referring to our own work we use the words non-clinical and clinical FCR. Quotation marks are used when referring to terms used by other authors to indicate FCR severity.
References
Lee-Jones C, Humphris G, Dixon R, Hatcher MB (1997) Fear of cancer recurrence—a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psychooncology 6:95–105
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 7:300–322. doi:10.1007/s11764-013-0272-z
Herschbach P, Dinkel A (2014) Fear of progression. In: Goerling U (ed) Psycho-oncology. Springer, Berlin, pp 11–29
Humphris G, Ozakinci G (2008) The AFTER intervention: a structured psychological approach to reduce fears of recurrence in patients with head and neck cancer. Br J Health Psychol 13:223–230. doi:10.1348/135910708X283751
Lebel S, Maheu C, Lefebvre M, Secord S, Courbasson C, Singh M et al (2014) Addressing fear of cancer recurrence among women with cancer: a feasibility and preliminary outcome study. J Cancer Surviv 8:485–496. doi:10.1007/s11764-014-0357-3
Crist JV, Grunfeld EA (2013) Factors reported to influence fear of recurrence in cancer patients: a systematic review. Psychooncology 22:978–986. doi:10.1002/pon.3114
Koch L, Jansen L, Brenner H, Arndt V (2013) Fear of recurrence and disease progression in long term (≥5 years) cancer survivors—a systematic review of quantitative studies. Psychooncology 22:1–11. doi:10.1002/pon.3022
Koch L, Bertram H, Eberle A, Holleczek B, Schmid-Hopfner S, Waldmann A et al (2014) 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 23:547–554. doi:10.1002/pon.3452
Thewes B, Butow P, Zachariae R, Christensen S, Simard S, Gotay C (2012) Fear of cancer recurrence: a systematic literature review of self-report measures. Psychooncology 21:571–587. doi:10.1002/pon.2070
Simard S, Savard J (2015) Screening and comorbidity of clinical levels of fear of cancer recurrence. J Cancer Surviv 9:481–491. doi:10.1007/s11764-015-0424-4
Simard S, Savard J (2009) Fear of cancer recurrence inventory: development and initial validation of a multidimensional measure of fear of recurrence. Support Care Cancer 17:241–251. doi:10.1007/s00520-008-0444-y
Simard S, Savard J, Ivers H (2010) Fear of cancer recurrence: specific profiles and nature of intrusive thoughts. J Cancer Surviv 4:361–371. doi:10.1007/s11764-010-0136-8
Thewes B, Butow P, Bell ML, Beith J, Stuart-Harris R, Grossi M et al (2012) 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 20:2651–2659. doi:10.1007/s00520-011-1371-x
Custers JAE, Gielissen MFM, Janssen SHV, de Wilt JHW, Prins JB (2016) Fear of cancer recurrence in colorectal cancer survivors. Support Care Cancer 24:555–562. doi:10.1007/s00520-015-2808-4
Costa DSJ, Smith AB, Fardell JE (2016) The sum of all fears: conceptual challenges with measuring fear of cancer recurrence. Support Care Cancer 24:1–3. doi:10.1007/s00520-015-2943-y
Lebel S, Simard S, Harris C, Feldstain A, Beattie S, McCallum M et al (2016) Empirical validation of the English version of the fear of cancer recurrence inventory. Qual Life Res 25:311–321. doi:10.1007/s11136-015-1088-2
Thewes B, Lebel S, Seguin-Leclaire C, Butow P (2015) A qualitative exploration of fear of cancer recurrence amongst Australian and Canadian breast cancer survivors. Support Care Cancer. doi:10.1007/s00520-015-3025-x
Guest G, Bunce A, Johnson L (2006) How many interviews are enough? An experiment with data saturation and variability. Field Methods 18:59–82. doi:10.1177/1525822X05279903
Creswell JW (2013) Qualitative inquiry and research design: choosing among five approaches, 3rd edn. Sage, Los Angeles
Achillle MA, Rosberger Z, Robitaille R, Lebel S, Gouin JP, Bultz BD et al (2006) Facilitators and obstacles to sperm banking in young men receiving gonadotoxic chemotherapy for cancer: the perspective of survivors and health care professionals. Hum Reprod 21:3206–3216. doi:10.1093/humrep/del307
Miles MB, Huberman AM (1994) Qualitative data analysis: an expanded sourcebook, 2nd edn. Sage, London
Joffe H (2012) Thematic analysis. In: Harper D, Thompson AR (eds) Qualitative research methods in mental health and psychotherapy: a guide for students and practitioners. John Wiley & Sons, Chinchester, pp 209–23
Muse K, McManus F, Hackmann A, Williams M, Williams M (2010) Intrusive imagery in severe health anxiety: prevalence, nature and links with memories and maintenance cycles. Behav Res Ther 48:792–798. doi:10.1016/j.brat.2010.05.008
De Vries J, Den Oudsten BL, Jacobs PMEP, Roukema JA (2014) How breast cancer survivors cope with fear of recurrence: a focus group study. Support Care Cancer 22:705–712. doi:10.1007/s00520-013-2025-y
Veale D, Page N, Woodward E, Salkovskis P (2015) Imagery rescripting for obsessive compulsive disorder: a single case experimental design in 12 cases. J Behava Ther Exp Psychiatry 49:230–236. doi:10.1016/j.jbtep.2015.03.003
Barrera TL, Mott JM, Hofstein RF, Teng EJ (2013) A meta-analytic review of exposure in group cognitive behavioral therapy for posttraumatic stress disorder. Clin Psychol Rev 33:24–32. doi:10.1016/j.cpr.2012.09.005
Maheu C, Lebel S, Tomei C, Singh M, Esplen MJ (2015) Breast and ovarian cancer survivors’ experience participating in a cognitive-existential group intervention addressing fear of cancer recurrence. Eur J Oncol Nurs 19:433–440. doi:10.1016/j.ejon.2014.12.003
van de Wal MA, Gielissen MF, Servaes P, Knoop H, Speckens AE, Prins JB (2015) Study protocol of the SWORD-study: a randomised controlled trial comparing combined online and face-to-face cognitive behaviour therapy versus treatment as usual in managing fear of cancer recurrence. BMC Psychol. doi:10.1186/s40359-015-0068-1
Tomei C, Lebel S, Maheu C, Mutsaers B (2016) Addressing fear of recurrence: improving psychological care in cancer survivors. Support Care Cancer. doi:10.1007/s00520-016-3103-8
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorder DSM-5. American Psychiatric Association, Arlington
Lebel S, Tomei C, Feldstain A, Beattie S, McCallum M (2013) Does fear of cancer recurrence predict cancer survivors’ health care use? Support Care Cancer 21:901–906. doi:10.1007/s00520-012-1685-3
Lebel S, Beattie S, Ares I, Bielajew C (2013) Young and worried: age and fear of recurrence in breast cancer survivors. Health Psychol 32:695–705. doi:10.1037/a0030186
Spencer L, Ritchie J (2012) In pursuit of quality. In: Harper D, Thompson AR (eds) Qualitative research methods in mental health and psychotherapy: a guide for students and practitioners. John Wiley & Sons, Chinchester, pp 227–242
Acknowledgments
We would like to thank Sara Beattie, Megan McCallum, Andrea Feldstain, and our volunteers for their assistance with this project. We would also like to thank our participants for sharing their experiences.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Funding
This study was supported by Research Development Funds from the University of Ottawa awarded to Dr. Sophie Lebel.
Ethical approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Conflict of interest
The authors declare no conflict of interest.
Rights and permissions
About this article
Cite this article
Mutsaers, B., Jones, G., Rutkowski, N. et al. When fear of cancer recurrence becomes a clinical issue: a qualitative analysis of features associated with clinical fear of cancer recurrence. Support Care Cancer 24, 4207–4218 (2016). https://doi.org/10.1007/s00520-016-3248-5
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-016-3248-5