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Prevalence and correlates of fear of recurrence among oral and oropharyngeal cancer survivors

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Abstract

Purpose

Fear of recurrence (FoR) is a prevalent and difficult experience among cancer patients. Most research has focused on FoR among breast cancer patients, with less attention paid to characterizing levels and correlates of FoR among oral and oropharyngeal cancer survivors. The purpose was to characterize FoR with a measure assessing both global fears and the nature of specific worries as well as evaluate the role of sociodemographic and clinical factors, survivorship care transition practices, lifestyle factors, and depressive symptoms in FoR.

Methods

Three hundred eighty-nine oral and oropharyngeal survivors recruited from two cancer registries completed a survey assessing demographics, cancer treatment, symptoms, alcohol and tobacco use, survivorship care practices, depression, and FoR.

Results

Forty percent reported elevated global FoR, with similar percentages for death (46%) and health worries (40.3%). Younger, female survivors and survivors experiencing more physical and depressive symptoms reported more global fears and specific fears about the impact of recurrence on roles, health, and identity, and fears about death. Depression accounted for a large percent of the variance. Lower income was associated with more role and identity/sexuality worries, and financial hardship was associated with more role worries.

Conclusions

FoR is a relatively common experience for oral and oropharyngeal cancer survivors. Many of its correlates are modifiable factors that could be addressed with multifocal, tailored survivorship care interventions.

Implications for Cancer Survivors

Assessing and addressing depressive symptoms, financial concerns, expected physical symptoms in the first several years of survivorship may impact FoR among oral and oropharyngeal cancer survivors.

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Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

References

  1. Cancer Stats and Figures. American Cancer Society. 2022. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2022.html. Accessed 7/6/23.

  2. American Cancer Society. Cancer Facts & Figures 2023. 2023. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2023/2023-cancer-facts-and-figures.pdf. Accessed 7/6/23.

  3. Chaturvedi AK, Engels EA, Pfeiffer RM, Hernandez BY, Xiao W, Kim E, Jiang B, Goodman MT, Sibug-Saber M, Cozen W, Liu L, Lynch CF, Wentzensen N, Jordan RC, Altekruse S, Anderson WF, Rosenberg PS, Gillison ML. Human papillomavirus and rising oropharyngeal cancer incidence in the United States. J Clin Oncol. 2011;29(32):4294–301. https://doi.org/10.1200/jco.2011.36.4596.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Ang KK, Harris J, Wheeler R, Weber R, Rosenthal DI, Nguyen-Tân PF, Westra WH, Chung CH, Jordan RC, Lu C, Kim H, Axelrod R, Silverman CC, Redmond KP, Gillison ML. Human papillomavirus and survival of patients with oropharyngeal cancer. N Engl J Med. 2010;363(1):24–35. https://doi.org/10.1056/NEJMoa0912217.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  5. Badr H, Lipnick D, Gupta V, Miles B. Survivorship challenges and information needs after radiotherapy for oral cancer. J Cancer Educ. 2017;32(4):799–807. https://doi.org/10.1007/s13187-016-1048-8.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Epstein JB, Thariat J, Bensadoun RJ, Barasch A, Murphy BA, Kolnick L, Popplewell L, Maghami E. Oral complications of cancer and cancer therapy: from cancer treatment to survivorship. CA Cancer J Clin. 2012;62(6):400–22. https://doi.org/10.3322/caac.21157.

    Article  PubMed  Google Scholar 

  7. Cardoso RC, Kamal M, Zaveri J, Chambers MS, Gunn GB, Fuller CD, Lai SY, Mott FE, McMillan H, Hutcheson KA. Self-reported trismus: prevalence, severity and impact on quality of life in oropharyngeal cancer survivorship: a cross-sectional survey report from a comprehensive cancer center. Support Care Cancer. 2021;29(4):1825–35. https://doi.org/10.1007/s00520-020-05630-7.

    Article  PubMed  Google Scholar 

  8. Hammerlid E, Taft C. Health-related quality of life in long-term head and neck cancer survivors: a comparison with general population norms. Br J Cancer. 2001;84(2):149–56. https://doi.org/10.1054/bjoc.2000.1576.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  9. Lebel S, Ozakinci G, Humphris G, Mutsaers B, Thewes B, Prins J, Dinkel A, Butow P. 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.

    Article  PubMed  Google Scholar 

  10. Deuning-Smit E, Custers JAE, Miroševič Š, Takes RP, Jansen F, Langendijk JA, Terhaard CHJ, Baatenburg de Jong RJ, Leemans CR, Smit JH, Kwakkenbos L, Verdonck-de Leeuw IM, Prins JB. Prospective longitudinal study on fear of cancer recurrence in patients newly diagnosed with head and neck cancer: course, trajectories, and associated factors. Head Neck. 2022;44(4):914–25. https://doi.org/10.1002/hed.26985.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Casswell G, Gough K, Drosdowsky A, Bressel M, Coleman A, Shrestha S, D’Costa I, Fua T, Tiong A, Liu C, Rischin D, McDowell L. Fear of cancer recurrence in survivors of human papillomavirus-associated oropharyngeal carcinoma. Int J Radiat Oncol Biol Phys. 2021;111(4):890–9. https://doi.org/10.1016/j.ijrobp.2021.07.006.

    Article  PubMed  Google Scholar 

  12. Handschel J, Naujoks C, Kübler NR, Krüskemper G. Fear of recurrence significantly influences quality of life in oral cancer patients. Oral Oncol. 2012;48(12):1276–80. https://doi.org/10.1016/j.oraloncology.2012.06.015.

    Article  PubMed  Google Scholar 

  13. Miroševič Š, Thewes B, Herpen C, Kaanders J, Merkx T, Humphris G, Baatenburg de jong R, Langendijk J, Leemans C, Terhaard C, Leeuw I, Takes R, Prins J, Consortium, t. Prevalence and clinical and psychological correlates of high fear of cancer recurrence in patients newly diagnosed with head and neck cancer. Head Neck. 2019; 41. https://doi.org/10.1002/hed.25812.

  14. Ghazali N, Cadwallader E, Lowe D, Humphris G, Ozakinci G, Rogers SN. Fear of recurrence among head and neck cancer survivors: longitudinal trends. Psycho-Oncol. 2013;22(4):807–13. https://doi.org/10.1002/pon.3069.

    Article  Google Scholar 

  15. Humphris GM, Rogers S, McNally D, Lee-Jones C, Brown J, Vaughan D. Fear of recurrence and possible cases of anxiety and depression in orofacial cancer patients. Int J Oral Maxillofac Surg. 2003;32(5):486–91.

    Article  CAS  PubMed  Google Scholar 

  16. Riggauer J, Blaser D, Elicin O, Gahl B, Giger R, Mueller SA. Risk factors for fear of recurrence in head and neck cancer patients. Laryngoscope. 2023;133(7):1630–7. https://doi.org/10.1002/lary.30340.

    Article  CAS  PubMed  Google Scholar 

  17. Rogers SN, Monssen C, Humphris GM, Lowe D, Kanatas A. Which head and neck cancer patients are most at risk of high levels of fear of cancer recurrence. Front Psychol. 2021;12:671366. https://doi.org/10.3389/fpsyg.2021.671366.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Janz TA, Momin SR, Sterba KR, Kato MG, Armeson KE, Day TA. Comparison of psychosocial factors over time among HPV+ oropharyngeal cancer and tobacco-related oral cavity cancer patients. Am J Otolaryngol. 2019;40(1):40–5. https://doi.org/10.1016/j.amjoto.2018.08.010.

    Article  PubMed  Google Scholar 

  19. Tsay SL, Wang JY, Lee YH, Chen YJ. Fear of recurrence: a mediator of the relationship between physical symptoms and quality of life in head and neck cancer patients. Eur J Cancer Care (Engl). 2020;29(4):e13243. https://doi.org/10.1111/ecc.13243.

    Article  PubMed  Google Scholar 

  20. Manne SL, Knott CL, Berger A, Champion VL, Chrischilles E, Fitzgibbon ML, Kinney AY, Lengerich EJ, Nash SH, Simon MA, Trentham-Dietz A, Paskett ED. Current approaches to serving catchment areas in cancer centers: insights from the big ten cancer research consortium population science working group. Cancer Epidemiol Biomark Prev. 2023;32(4):465–72. https://doi.org/10.1158/1055-9965.Epi-22-0958.

    Article  Google Scholar 

  21. Singh GK. Area deprivation and widening inequalities in US mortality, 1969–1998. Am J Public Health. 2003;93(7):1137–43. https://doi.org/10.2105/ajph.93.7.1137.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Kind AJ, Jencks S, Brock J, Yu M, Bartels C, Ehlenbach W, Greenberg C, Smith M. Neighborhood socioeconomic disadvantage and 30-day rehospitalization: a retrospective cohort study. Ann Intern Med. 2014;161(11):765–74. https://doi.org/10.7326/m13-2946.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Kind AJH, Buckingham WR. Making neighborhood-disadvantage metrics accessible - the neighborhood atlas. N Engl J Med. 2018;378(26):2456–8. https://doi.org/10.1056/NEJMp1802313.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Singer S, Araújo C, Arraras JI, Baumann I, Boehm A, BrokstadHerlofson B, Castro Silva J, Chie WC, Fisher S, Guntinas-Lichius O, Hammerlid E, Irarrázaval ME, Jensen Hjermstad M, Jensen K, Kiyota N, Licitra L, Nicolatou-Galitis O, Pinto M, Santos M, Schmalz C, Sherman AC, Tomaszewska IM, Verdonck de Leeuw I, Yarom N, Zotti P, Hofmeister D. Measuring quality of life in patients with head and neck cancer: update of the EORTC QLQ-H&N module, phase III. Head Neck. 2015;37(9):1358–67. https://doi.org/10.1002/hed.23762.

    Article  PubMed  Google Scholar 

  25. Osthus AA, Aarstad AK, Olofsson J, Aarstad HJ. Head and neck specific Health Related Quality of Life scores predict subsequent survival in successfully treated head and neck cancer patients: a prospective cohort study. Oral Oncol. 2011;47(10):974–9. https://doi.org/10.1016/j.oraloncology.2011.07.010.

    Article  PubMed  Google Scholar 

  26. Cantor D, Coa K, Crystal-Mansour S, Davis T, Dipko S, Sigman R. Health Information Trends Survey (HINTS) 2007: final report. 2007. https://hints.cancer.gov/docs/HINTS2007FinalReport.pdf. Accessed 7/6/23.

  27. Nelson DE, Kreps GL, Hesse BW, Croyle RT, Willis G, Arora NK, Rimer BK, Viswanath KV, Weinstein N, Alden S. The Health Information National Trends Survey (HINTS): development; design, and dissemination. J Health Commun. 2004;9(5):443–60. https://doi.org/10.1080/10810730490504233.

    Article  PubMed  Google Scholar 

  28. Follow-up Care Use Among Survivors (FOCUS) Survey. National Cancer Institute, Division of Cancer Control & Population Sciences. 2020. Retrieved February 8 from https://cancercontrol.cancer.gov/ocs/resources/researchers/FOCUS. Accessed 7/6/23.

  29. Jones JM, Cheng T, Jackman M, Walton T, Haines S, Rodin G, Catton P. Getting back on track: evaluation of a brief group psychoeducation intervention for women completing primary treatment for breast cancer. Psychooncology. 2013;22(1):117–24. https://doi.org/10.1002/pon.2060.

    Article  PubMed  Google Scholar 

  30. Leach CR, Troeschel AN, Wiatrek D, Stanton AL, Diefenbach M, Stein KD, Sharpe K, Portier K. Preparedness and cancer-related symptom management among cancer survivors in the first year post-treatment. Ann Behav Med. 2017;51(4):587–98. https://doi.org/10.1007/s12160-017-9880-6.

    Article  PubMed  Google Scholar 

  31. Stanton AL, Ganz PA, Kwan L, Meyerowitz BE, Bower JE, Krupnick JL, Rowland JH, Leedham B, Belin TR. Outcomes from the Moving Beyond Cancer psychoeducational, randomized, controlled trial with breast cancer patients. J Clin Oncol. 2005;23(25):6009–18. https://doi.org/10.1200/jco.2005.09.101.

    Article  PubMed  Google Scholar 

  32. Manne S, Hudson S, Frederick S, Mitarotondo A, Baredes S, Kalyoussef E, Ohman-Strickland P, Kashy DA. e-Health self-management intervention for oral and oropharyngeal cancer survivors: design and single-arm pilot study of empowered survivor. Head Neck. 2020;42(11):3375–88. https://doi.org/10.1002/hed.26403.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Stacey D, O’Connor AM, DeGrasse C, Verma S. Development and evaluation of a breast cancer prevention decision aid for higher-risk women. Health Expect. 2003;6(1):3–18. https://doi.org/10.1046/j.1369-6513.2003.00195.x.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Manne S, Kashy D, Albrecht T, Wong YN, Flamm AL, Benson AB 3rd, Miller SM, Fleisher L, Buzaglo J, Roach N, Katz M, Ross E, Collins M, Poole D, Raivitch S, Miller DM, Kinzy TG, Liu T, Meropol NJ. Knowledge, attitudes, and self-efficacy as predictors of preparedness for oncology clinical trials: a mediational model. Med Decis Mak. 2014;34(4):454–63. https://doi.org/10.1177/0272989x13511704.

    Article  Google Scholar 

  35. Manne S, Hudson SV, Baredes S, Stroup A, Virtue SM, Paddock L, Kalyoussef E. Survivorship care experiences, information, and support needs of patients with oral and oropharyngeal cancer. Head Neck. 2016;38 Suppl 1(Suppl 1):E1935-1946. https://doi.org/10.1002/hed.24351.

    Article  PubMed  Google Scholar 

  36. Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–13. https://doi.org/10.1046/j.1525-1497.2001.016009606.x.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  37. Hinz A, Mehnert A, Kocalevent RD, Brähler E, Forkmann T, Singer S, Schulte T. Assessment of depression severity with the PHQ-9 in cancer patients and in the general population. BMC Psychiatry. 2016;16:22. https://doi.org/10.1186/s12888-016-0728-6.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  38. Vickberg SM. The Concerns About Recurrence Scale (CARS): a systematic measure of women’s fears about the possibility of breast cancer recurrence. Ann Behav Med. 2003;25(1):16–24. https://doi.org/10.1207/s15324796abm2501_03.

    Article  PubMed  Google Scholar 

  39. van den Beuken-van Everdingen MH, Peters ML, de Rijke JM, Schouten HC, van Kleef M, Patijn J. Concerns of former breast cancer patients about disease recurrence: a validation and prevalence study. Psychooncology. 2008;17(11):1137–45. https://doi.org/10.1002/pon.1340.

    Article  PubMed  Google Scholar 

  40. Fuemmeler BF, Shen J, Zhao H, Winn R. Neighborhood deprivation, racial segregation and associations with cancer risk and outcomes across the cancer-control continuum. Mol Psychiatry. 2023;28(4):1494–501. https://doi.org/10.1038/s41380-023-02006-1.

    Article  CAS  PubMed  Google Scholar 

  41. 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.

    Article  PubMed  Google Scholar 

  42. Cohee AA, Adams RN, Johns SA, Von Ah D, Zoppi K, Fife B, Monahan PO, Stump T, Cella D, Champion VL. Long-term fear of recurrence in young breast cancer survivors and partners. Psychooncology. 2017;26(1):22–8. https://doi.org/10.1002/pon.4008.

    Article  PubMed  Google Scholar 

  43. Liu Y, Pérez M, Schootman M, Aft RL, Gillanders WE, Jeffe DB. Correlates of fear of cancer recurrence in women with ductal carcinoma in situ and early invasive breast cancer. Breast Cancer Res Treat. 2011;130(1):165–73. https://doi.org/10.1007/s10549-011-1551-x.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  44. Van Liew JR, Christensen AJ, Howren MB, HyndsKarnell L, Funk GF. Fear of recurrence impacts health-related quality of life and continued tobacco use in head and neck cancer survivors. Health Psychol. 2014;33(4):373–81. https://doi.org/10.1037/a0032680.

    Article  PubMed  Google Scholar 

  45. Brands MT, Smeekens EAJ, Takes RP, Kaanders JHAM, Verbeek ALM, Merkx MAW, Geurts SME. Time patterns of recurrence and second primary tumors in a large cohort of patients treated for oral cavity cancer. Cancer Med. 2019;8(12):5810–9. https://doi.org/10.1002/cam4.2124.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Mathew A, Doorenbos AZ, Jang MK, Hershberger PE. Acceptance and commitment therapy in adult cancer survivors: a systematic review and conceptual model. J Cancer Surviv. 2021;15(3):427–51. https://doi.org/10.1007/s11764-020-00938-z.

    Article  PubMed  Google Scholar 

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Acknowledgements

We would like to thank the following individuals for their valuable contributions to this project: Carolina Lozada, Lisa Paddock, Alexandria Kulik, Muhammad Farooq Ahmed (NJSCR), and Wendy Huggins (NJSCR). We would like to acknowledge the following for their assistance with recruitment: The Cancer Registry of Greater California (Public Health Institute) and the New Jersey State Cancer Registry (supported by the Cancer Surveillance Research Program (CSRP) and the New Jersey State Cancer Registry (NJSCR), the US Centers for Disease Control and Prevention's National Program of Cancer Registries. Justin Solleder provided support in manuscript preparation.

Funding

This project was supported by the National Cancer Institute under R01 CA240344-01A1 awarded to Sharon Manne, and data management was supported by the Cancer Prevention and Outcomes Data Support Shared Resource.

Author information

Authors and Affiliations

  1. Rutgers Cancer Institute of New Jersey, 120 Albany St, 8th Floor, New Brunswick, NJ, 08901, USA

    Sharon L. Manne, Matin Imanguli, Sara Frederick, Neetu Singh & Alexis Schaefer

  2. Institute for Health, Health Care Policy and Aging Research, Robert Wood Johnson Medical School, 112 Paterson St, New Brunswick, NJ, 08901, USA

    Shawna V. Hudson

  3. Department of Psychology and Human Development, Vanderbilt University, Nashville, TN, USA

    Kristopher J. Preacher

  4. Department of Otolaryngology-Head and Neck Surgery, Robert Wood Johnson Medical School, New Brunswick, NJ, USA

    Matin Imanguli

  5. Rutgers School of Public Health, 683 Hoes Lane West, Piscataway, NJ, 08854, USA

    Morgan Pesanelli

  6. NYU Rory Meyers College of Nursing, 433 First Avenue, New York, NY, 10010, USA

    Janet H. Van Cleave

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  1. Sharon L. Manne
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Contributions

SM and KP wrote the manuscript text and prepared the tables. SM and KP conducted data analyses; SF, MP, AS, and NS collected study data; SF and NS conducted data quality checks; SH, MI, and JVC participated in the study’s design and conception.

Corresponding author

Correspondence to Sharon L. Manne.

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Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Rutgers University, ID#: Pro2020000768, Date: 7/14/2020.

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Informed consent was obtained from all individual participants included in the study.

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N/A No personal information of participants is published in this article.

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The authors declare no competing interests.

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Manne, S.L., Hudson, S.V., Preacher, K.J. et al. Prevalence and correlates of fear of recurrence among oral and oropharyngeal cancer survivors. J Cancer Surviv (2023). https://doi.org/10.1007/s11764-023-01449-3

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