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A qualitative examination of patient priorities and preferences during treatment decision-making for recurrent head and neck cancer

Supportive Care in Cancer volume 29, pages 377–385 (2021)Cite this article

Abstract

Purpose

Patients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC.

Methods

Individuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data.

Results

Participants (n = 38) considered information from healthcare providers, likelihood of treatment success, and other patient-specific factors in making their treatment decisions.

Conclusions

Although patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.

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References

  1. Global Burden of Disease Cancer Collaboration (2017) Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the global burden of disease study. JAMA Oncol 3(4):524–548. https://doi.org/10.1001/jamaoncol.2016.5688

    Article  PubMed Central  Google Scholar 

  2. Denaro N, Merlano MC, Russi EG (2016) Follow-up in head and neck cancer: do more does it mean do better? A systematic review and our proposal based on our experience. Clin Exp Otorhinolaryngol 9(4):287–297. https://doi.org/10.21053/ceo.2015.00976

    Article  PubMed  PubMed Central  Google Scholar 

  3. Marur S, Forastiere AA (2016) Head and neck squamous cell carcinoma: update on epidemiology, diagnosis, and treatment. Mayo Clin Proc 91(3):386–396. https://doi.org/10.1016/j.mayocp.2015.12.017

    Article  PubMed  PubMed Central  Google Scholar 

  4. Rhoten BA, Murphy B, Ridner SH (2013) Body image in patients with head and neck cancer: a review of the literature. Oral Oncol 49(8):753–760. https://doi.org/10.1016/j.oraloncology.2013.04.005

    Article  PubMed  Google Scholar 

  5. Ichikura K, Yamashita A, Sugimoto T, Kishimoto S, Matsushima E (2016) Persistence of psychological distress and correlated factors among patients with head and neck cancer--CORRIGENDUM. Palliat Support Care 14(1):86–88. https://doi.org/10.1017/S147895151500084X

    Article  PubMed  Google Scholar 

  6. Brockstein B, Haraf DJ, Rademaker AW, Kies MS, Stenson KM, Rosen F, Mittal BB, Pelzer H, Fung BB, Witt ME, Wenig B, Portugal L, Weichselbaum RW, Vokes EE (2004) Patterns of failure, prognostic factors and survival in locoregionally advanced head and neck cancer treated with concomitant chemoradiotherapy: a 9-year, 337-patient, multi-institutional experience. Ann Oncol 15(8):1179–1186. https://doi.org/10.1093/annonc/mdh308

    CAS  Article  PubMed  Google Scholar 

  7. Pignon JP, le Maitre A, Maillard E, Bourhis J (2009) Meta-analysis of chemotherapy in head and neck cancer (MACH-NC): an update on 93 randomised trials and 17,346 patients. Radiother Oncol 92(1):4–14. https://doi.org/10.1016/j.radonc.2009.04.014

    Article  PubMed  Google Scholar 

  8. List MA, Stracks J, Colangelo L, Butler P, Ganzenko N, Lundy D, Sullivan P, Haraf D, Kies M, Goodwin W, Vokes EE (2000) How do head and neck cancer patients prioritize treatment outcomes before initiating treatment? J Clin Oncol 18(4):877–884

    CAS  Article  Google Scholar 

  9. List MA, Rutherford JL, Stracks J, Pauloski BR, Logemann JA, Lundy D, Sullivan P, Goodwin W, Kies M, Vokes EE (2004) Prioritizing treatment outcomes: head and neck cancer patients versus nonpatients. Head Neck 26(2):163–170

    Article  Google Scholar 

  10. Tschiesner U, Sabariego C, Linseisen E, Becker S, Stier-Jarmer M, Cieza A, Harreus U (2013) Priorities of head and neck cancer patients: a patient survey based on the brief ICF core set for HNC. Eur Arch Otorhinolaryngol 270(12):3133–3142

    Article  Google Scholar 

  11. Goodwin WJ Jr (2000) Salvage surgery for patients with recurrent squamous cell carcinoma of the upper aerodigestive tract: when do the ends justify the means? Laryngoscope 110(3 Pt 2 Suppl 93):1–18. https://doi.org/10.1097/00005537-200003001-00001

    Article  PubMed  Google Scholar 

  12. Agra IM, Carvalho AL, Pontes E et al (2003) Postoperative complications after en bloc salvage surgery for head and neck cancer. Arch Otolaryngol Head Neck Surg 129(12):1317–1321. https://doi.org/10.1001/archotol.129.12.1317

    Article  PubMed  Google Scholar 

  13. Nilsen ML, Johnson JT (2017) Potential for low-value palliative care of patients with recurrent head and neck cancer. Lancet Oncol 18(5):e284–e289. https://doi.org/10.1016/s1470-2045(17)30260-7

    Article  PubMed  Google Scholar 

  14. Mehanna H, Kong A, Ahmed SK (2016) Recurrent head and neck cancer: United Kingdom National Multidisciplinary Guidelines. J Laryngol Otol 130(S2):S181–s190. https://doi.org/10.1017/s002221511600061x

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  15. Brockstein B, Vokes E. Treatment of metastatic and recurrent head and neck cancer. UpToDate Web site. https://www.uptodate.com/contents/treatment-of-metastatic-and-recurrent-head-and-neck-cancer. Published 2013. Accessed 29 May 2018

  16. Milano MT, Chmura SJ, Haraf DJ, Banuchi V, Kraus D, Fried MP. Treatment of locally recurrent squamous cell carcinoma of the head and neck. UptoDate. 2018. https://www.uptodate.com/contents/treatment-of-locally-recurrent-squamous-cell-carcinoma-of-the-head-and-neck. Accessed 27 Mar 2019

  17. Sciubba JJ (2009) End of life considerations in the head and neck cancer patient. Oral Oncol 45(4–5):431–434. https://doi.org/10.1016/j.oraloncology.2008.06.001

    Article  PubMed  Google Scholar 

  18. Graner KM, Rolim GS, Moraes ABA, Padovani CR, Lopes MA, Santos-Silva AR, Ramos-Cerqueira ATA (2016) Feelings, perceptions, and expectations of patients during the process of oral cancer diagnosis. Support Care Cancer 24(5):2323–2332. https://doi.org/10.1007/s00520-015-3030-0

    CAS  Article  PubMed  Google Scholar 

  19. Rogers SN, Hogg ES, Cheung WK et al (2015) ‘What will I be like’ after my diagnosis of head and neck cancer? Eur Arch Otorhinolaryngol 272(9):2463–2472. https://doi.org/10.1007/s00405-014-3189-x

    CAS  Article  PubMed  Google Scholar 

  20. O'Sullivan EM, Higginson IJ (2016) ‘I’ll continue as long as I can, and die when I can’t help it’: a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC). BMJ Support Palliat Care 6(1):43–51. https://doi.org/10.1136/bmjspcare-2014-000664

    CAS  Article  PubMed  Google Scholar 

  21. Hamilton DW, Heaven B, Thomson RG, Wilson JA, Exley C (2016) Multidisciplinary team decision-making in cancer and the absent patient: a qualitative study. BMJ Open 6(7):e012559. https://doi.org/10.1136/bmjopen-2016-012559

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  22. Morris LG, Chandramohan R, West L et al (2016) The molecular landscape of recurrent and metastatic head and neck cancers: insights from a precision oncology sequencing platform. JAMA Oncol 3:244–255. https://doi.org/10.1001/jamaoncol.2016.1790

    Article  Google Scholar 

  23. Ho AS, Kraus DH, Ganly I, Lee NY, Shah JP, Morris LG (2014) Decision making in the management of recurrent head and neck cancer. Head Neck 36(1):144–151. https://doi.org/10.1002/hed.23227

    Article  PubMed  Google Scholar 

  24. Kim H, Sefcik JS, Bradway C (2017) Characteristics of qualitative descriptive studies: a systematic review. Res Nurs Health 40(1):23–42. https://doi.org/10.1002/nur.21768

    CAS  Article  PubMed  Google Scholar 

  25. Tong A, Sainsbury P, Craig J (2007) Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19(6):349–357. https://doi.org/10.1093/intqhc/mzm042

    Article  Google Scholar 

  26. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42(2):377–381. https://doi.org/10.1016/j.jbi.2008.08.010

    Article  PubMed  Google Scholar 

  27. Dedoose [computer program]. Version 4.5, web application for managing, analyzing, and presenting qualitative and mixed method research data. (2013). Los Angeles, CA: SocioCultural Research Consultants, LLC (SCRC). https://www.dedoose.com/

  28. Bahl A, Oinam A, Elangovan A et al (2018) Evaluation of reirradiation in locally advanced head and neck cancers: toxicity and early clinical outcomes. J Oncol 2018:8183694–8183695. https://doi.org/10.1155/2018/8183694

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  29. Pêtre A, Dalban C, Karabajakian A et al (2018) Carboplatin in combination with weekly Paclitaxel as first-line therapy in patients with recurrent/metastatic head and neck squamous cell carcinoma unfit to EXTREME schedule. Oncotarget 9(31):22038–22046. https://doi.org/10.18632/oncotarget.25157

    Article  PubMed  PubMed Central  Google Scholar 

  30. Puts MT, Tapscott B, Fitch M et al (2015) A systematic review of factors influencing older adults’ decision to accept or decline cancer treatment. Cancer Treat Rev 41(2):197–215. https://doi.org/10.1016/j.ctrv.2014.12.010

    Article  PubMed  Google Scholar 

  31. Cranley NM, Curbow B, George TJ Jr, Christie J (2017) Influential factors on treatment decision making among patients with colorectal cancer: a scoping review. Support Care Cancer 25(9):2943–2951. https://doi.org/10.1007/s00520-017-3763-z

    Article  PubMed  Google Scholar 

  32. Orom H, Underwood W 3rd, Cheng Z, Homish DL, Scott I (2018) Relationships as medicine: quality of the physician-patient relationship determines physician influence on treatment recommendation adherence. Health Serv Res 53(1):580–596. https://doi.org/10.1111/1475-6773.12629

    Article  PubMed  Google Scholar 

  33. Easley J, Miedema B, Carroll JC et al (2016) Coordination of cancer care between family physicians and cancer specialists: importance of communication. Can Fam Physician 62(10):e608–e615 Published 2016/10/16

    PubMed  PubMed Central  Google Scholar 

  34. Berardi R, Ballatore Z, Bacelli W, Silva RR, Menichetti ET, Marcellini M, Duca M, Giacomini G, Marilungo K, Cascinu S (2015) Patient and caregiver needs in oncology. An Italian survey. Tumori 101(6):621–625. https://doi.org/10.5301/tj.5000362

    CAS  Article  PubMed  Google Scholar 

  35. Windon MJ, D’Souza G, Faraji F et al (2019) Priorities, concerns, and regret among patients with head and neck cancer. Cancer. 125:1281–1289. https://doi.org/10.1002/cncr.31920

    Article  PubMed  PubMed Central  Google Scholar 

  36. Roscoe LA, Tullis JA, Reich RR, McCaffrey JC (2013) Beyond good intentions and patient perceptions: competing definitions of effective communication in head and neck cancer care at the end of life. Health Commun 28(2):183–192. https://doi.org/10.1080/10410236.2012.666957

    Article  PubMed  Google Scholar 

  37. Reaby LL (1998) The quality and coping patterns of women’s decision-making regarding breast cancer surgery. Psycho-oncology. 7(3):252–262. https://doi.org/10.1002/(sici)1099-1611(199805/06)7:3<252::Aid-pon309>3.0.Co;2-o

    CAS  Article  PubMed  Google Scholar 

  38. Reamer E, Yang F, Holmes-Rovner M, Liu J, Xu J (2017) Influence of men’s personality and social support on treatment decision-making for localized prostate cancer. Biomed Res Int 2017:1467056–1467058. https://doi.org/10.1155/2017/1467056

    Article  PubMed  PubMed Central  Google Scholar 

  39. van der Linden N, Buter J, Pescott CP et al (2016) Treatments and costs for recurrent and/or metastatic squamous cell carcinoma of the head and neck in the Netherlands. Eur Arch Otorhinolaryngol 273(2):455–464. https://doi.org/10.1007/s00405-015-3495-y

    Article  PubMed  Google Scholar 

  40. de Souza JA, Kung S, O’Connor J, Yap BJ (2017) Determinants of patient-centered financial stress in patients with locally advanced head and neck cancer. J Oncol Pract 13(4):e310–e318. https://doi.org/10.1200/jop.2016.016337

    Article  PubMed  Google Scholar 

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Acknowledgments

We thank Dr. Barbara Murphy for her help in developing the interview guide. We thank Drs. Jill Gilbert, Kyle Mannion, Barbara Murphy, James Netterville, Ken Niermann, and Sarah Rohde for making their clinics available for participant recruitment. We would also like to acknowledge research assistants, Natalie Paul and Elizabeth Charron, for their work on this study.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Funding

This study was supported by the Agency for Healthcare Research and Quality (1K12HS022990-01) and National Center for Advancing Translational Sciences UL1 TR000445.

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Affiliations

  1. Vanderbilt University School of Nursing, 461 21st Avenue South 520 Godchaux Hall, Nashville, TN, 37240, USA

    Bethany A. Rhoten, Jessie I. Sellers, Breanna Baraff, Kelly H. Holler & Sheila H. Ridner

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  1. Bethany A. Rhoten
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  2. Jessie I. Sellers
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Correspondence to Bethany A. Rhoten.

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The authors declare they have no conflict of interest.

Research involving human participants

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Vanderbilt University Institutional Review Board #141575) and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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

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Rhoten, B.A., Sellers, J.I., Baraff, B. et al. A qualitative examination of patient priorities and preferences during treatment decision-making for recurrent head and neck cancer. Support Care Cancer 29, 377–385 (2021). https://doi.org/10.1007/s00520-020-05488-9

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  • DOI: https://doi.org/10.1007/s00520-020-05488-9

Keywords

  • Head and neck cancer
  • Recurrence
  • Decision-making
  • Quality of life
  • Survivorship