Skip to main content

Advertisement

Log in

Head and Neck Cancer: Improving Patient-Reported Outcome Measures for Clinical Practice

  • Head and Neck Cancer (L Licitra, Section Editor)
  • Published:
Current Treatment Options in Oncology Aims and scope Submit manuscript

Opinion statement

Head and neck cancer includes a wide range of tumors that occur in several areas of the upper aerodigestive tract. Most head and neck cancer patients report treatment-related late effects (both physical and psycho-social). High-quality and patient-centered care in head and neck cancer depend on the understanding of the continuum patient’s experience—the disease pathway. Healthcare has been improved by involving patients more actively in the disease process, and a few reports support that patient-reported outcomes—built around the patient’s experience—given in a timely manner to oncologists are extremely valuable in oncology clinical care. Implementation and clinical use of patient-reported outcomes requires some procedures involving head and neck cancer patients, clinicians, researchers, and institutional leaders The unified and integrated vision is still absent and some current concerns are being discussed to optimize benefits of patient-reported outcomes use in clinical practice. The inclusion of all first-line caregivers, team formation and training, continuous monitoring improvement, and analysis are critical success factors to consider. Our team developed a broader and inclusive understanding of patient-reported outcomes. Patient-reported outcome (Health-Related Quality of Life) assessment is implemented as a systematic and routine process in Head and Neck Unit. Head and neck cancer patients consider the questionnaire administration as part of the clinical approach. We are currently working in a program (PROimp) using mathematical models to identify common head and neck cancer patterns and building prognostic predictive models, to predict future outcomes, to appraise risk/benefit of treatments (standard or new), and to estimate patient’s risk of future disease development. It is our aim to better comprehend the singular and unexpected perceptions to really provide directed and personalized cancer care defining the patient pathway. The future holds promising for PROs that are ascending as a nuclear outcome in head and neck oncology.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

References and Recommended Reading

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. La Mantia I, Rossitto F, Andaloro C. Quality of life in head and neck cancer: patients’ and family caregivers’ perceptions. EJENTAS. 2017;18(3):247–50. https://doi.org/10.1016/j.ejenta.2017.11.002.

    Article  Google Scholar 

  2. Melo MR, Rocha BA, Pires MA, Fonseca ES, Santos FB. Quality of life of patients with head and neck cancer. Braz J Otorhinolaryngol. 2013;79(1):82–8. https://doi.org/10.5935/1808-8694.20130014.

    Article  Google Scholar 

  3. Christopher KM, Osazuwa-Peters N, Dougherty R, Indergaard SA, Varvares MA. Impact of treatment modality on quality of life of head and neck cancer patients: findings from an academic medical institution. Am J Otolaryngol. 2017;38(2):168–73. https://doi.org/10.1016/j.amjoto.2016.12.003.

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  5. Bjordal K, Ahlner-Elmqvist M, Hammerlid E, Boysen M, Evensen JF, Biorklund A, et al. A prospective study of quality of life in head and neck cancer patients. Part II: longitudinal data. Laryngoscope. 2001;111:1440–52.

    Article  CAS  Google Scholar 

  6. Hawkins PG, Kadam AS, Jackson WC, Eisbruch A. Organ-sparing in radiotherapy for head-and-neck cancer: improving quality of life. Semin Radiat Oncol. 2018;28(1):46–52. https://doi.org/10.1016/j.semradonc.2017.08.002.

    Article  PubMed  Google Scholar 

  7. Blanchard P, Baujat B, Holostenco V, Bourredjem A, Baey C, Bourhis J, et al. Meta-analysis of chemotherapy in head and neck cancer (mach-nc): a comprehensive analysis by tumour site. Radiother Oncol. 2011;100:33–40. https://doi.org/10.1016/j.radonc.2011.05.036.

    Article  PubMed  Google Scholar 

  8. Moss HA, Havrilesky LJ. The use of patient-reported outcome tools in gynecologic oncology research, clinical practice, and value-based care. Gynecol Oncol. 2018;148(1):12–8. https://doi.org/10.1016/j.ygyno.2017.11.011.

    Article  PubMed  Google Scholar 

  9. •• Bingham CO, Noonan VK, Auger C, Feldman DE, Bartlett SJ. Montreal accord on patient-reported outcomes (PROs) use series – paper 4: patient-reported outcomes can inform clinical decision making in chronic care. J Clin Epidemiol. 2017;89:136–41. https://doi.org/10.1016/j.jclinepi.2017.04.014 The paper offers a multilevel perspective of considerations around patient-reported outcomes measures selection and its use in clinical settings.

    Article  PubMed  Google Scholar 

  10. •• Dobbs TD, Hughes S, Mowbray N, Hutchings HA, Whitaker IS. How to decide which patient-reported outcome measure to use? A practical guide for plastic surgeons. J Plast Reconstr Aesthet Surg. 2018;71(7):957–66. https://doi.org/10.1016/j.bjps.2018.03.007. The paper describes the process of patient-reported outcome measures design and validation and presents some important steps that a well-designed PRO measure must go through.

    Article  PubMed  Google Scholar 

  11. •• Wilson R. Patient led PROMs must take Centre stage in cancer research. Res Involv Engagem. 2018;4:7. https://doi.org/10.1186/s40900-018-0092-4 Singular testimony of a patient who became interested in PROs development.

    Article  Google Scholar 

  12. • Sequeira T, Monteiro E, Carvalho L, Silveira A. 10-year experience: routine assessment of health related quality of life in head & neck cancer patients. Glob J Otolaryngol. 2017;12(2):555835–8. https://doi.org/10.19080/GJO.2017.12.555835 Reports a routine quality of life assessment implementation experience in an oncological institution and reflects on the challenges found.

    Article  Google Scholar 

  13. Silveira A, Gonçalves G, Sequeira T, Ribeiro C, Lopes C, Monteiro E, et al. Head and neck cancer: health related quality of life assessment considering clinical and epidemiological perspectives. Rev Bras Epidemiol. 2012;15(1):38–48.

    Article  Google Scholar 

  14. Wotherspoon RJ, Kanatas AN, Rogers SN. Review of HaNDLE-on-QoL: a database of published papers that use questionnaires to report quality of life in patients with cancer of the head and neck. Br J Oral Maxillofac Surg. 2018;56(2):e5–9. https://doi.org/10.1016/j.bjoms.2017.12.008.

    Article  CAS  PubMed  Google Scholar 

  15. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA. 2002;288(23):3027–34.

    Article  Google Scholar 

  16. Girgis A, Breen S, Stacey F, Lecathelinais C. Impact of two supportive care interventions on anxiety, depression, quality of life, and unmet needs in patients with nonlocalized breast and colorectal cancers. J Clin Oncol. 2009;27(36):6180–90. https://doi.org/10.1200/JCO.2009.22.8718.

    Article  PubMed  Google Scholar 

  17. Thewes B, Butow P, Stuart-Harris R. Does routine psychological screening of newly diagnosed rural cancer patients lead to better patient outcomes? Results of a pilot study. Aust J Rural Health. 2009;17(6):298–304. https://doi.org/10.1111/j.1440-1584.2009.01087.x.

    Article  PubMed  Google Scholar 

  18. Nicklasson M, Elfstrom ML, Olofson J, Bergman B. The impact of individual quality of life assessment on psychosocial attention in patients with chest malignancies: a randomized study. Support Care Cancer. 2013;21(1):87–95. https://doi.org/10.1007/s00520-012-1496-6.

    Article  PubMed  Google Scholar 

  19. Ringash J. Survivorship and quality of life in head and neck cancer. J Clin Oncol. 2015;33(29):3322–7. https://doi.org/10.1200/JCO.2015.61.4115.

    Article  PubMed  Google Scholar 

  20. Verdonck-de Leeuw IM, van Nieuwenhuizen A, Leemans CR. The value of quality-of-life questionnaires in head and neck cancer. Curr Opin Otolaryngol Head Neck Surg. 2012;20(2):142–7. https://doi.org/10.1097/MOO.0b013e32834f5fd7.

    Article  PubMed  Google Scholar 

  21. de Souza Oliveira-Kumakura AR, Caldeira S, Prado Simão T, Camargo-Figuera FA, de Almeida Lopes Monteiro da Cruz D, Campos de Carvalho E. The contribution of the Rasch model to the clinical validation of nursing diagnoses: integrative literature review. Int J Nurs Knowl 2018; 29(2):89–96. https://doi.org/10.1111/2047-3095.12162.

  22. Nguyen NA, Ringash J. Head and neck cancer survivorship care: a review of the current guidelines and remaining unmet needs. Curr Treat Options in Oncol. 2018;19:44. https://doi.org/10.1007/s11864-018-0554-9.

    Article  Google Scholar 

  23. Cano SJ, Hobart SC. The problem with health measurement. Patient Prefer Adherence. 2011;5:279–90. https://doi.org/10.2147/PPA.S14399.

    Article  PubMed  PubMed Central  Google Scholar 

  24. McNeely RN, Moutari S, Arba-Mosquera S, Verma S, Moore JE. An alternative application of Rasch analysis to assess data from ophthalmic patient-reported outcome instruments. PLoS One. 2018;13(6):e0197503. https://doi.org/10.1371/journal.pone.0197503.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Chien T-W, Chang Y, Wen Pharmacist K-S, Uen Y-H. Using graphical representations to enhance the quality-of-care for colorectal cancer patients. Eur J Cancer Care. 2018;27:e12951. https://doi.org/10.1111/ecc.12591.

    Article  Google Scholar 

  26. Amin L, Rosenbaum P, Barr R, Sung L, Klaassen RJ, Dix DB, et al. Rasch analysis of the PedsQL: an increased understanding of the properties of a rating scale. J Clin Epidemiol. 2012;65(10):1117–23. https://doi.org/10.1016/j.jclinepi.2012.04.014.

    Article  PubMed  Google Scholar 

  27. Silveira A, Gonçalves G, Sequeira T, Ribeiro C, Lopes C, Monteiro E, et al. Geriatric oncology: comparing health related quality of life in head and neck cancer patients. Head Neck Oncol. 2011;3:3.

    Article  Google Scholar 

  28. Hagquist C, Bruce M, Gustavsson JP. Using the Rasch model in nursing research: an introduction and illustrative example. Int J Nurs Stud. 2009;46(3):380–93. https://doi.org/10.1016/j.ijnurstu.2008.10.007.

    Article  PubMed  Google Scholar 

  29. Boone WJ. Rasch analysis for instrument development: why, when, and how? CBE Life Sci Educ. 2016;15(4):1–20.

    Article  Google Scholar 

  30. Esakki S, MacDermid JC, Vincent JI, Packham TL, Walton D, Grewal R. Rasch analysis of the patient-rated wrist evaluation questionnaire. Arch Physiother. 2018;8:5. https://doi.org/10.1186/s40945-018-0046-z.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol. 2016;34(65):557–65. https://doi.org/10.1200/JCO.2015.63.0830.

    Article  CAS  PubMed  Google Scholar 

  32. Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res. 2013;13(211):1–31. https://doi.org/10.1186/1472-6963-13-211.

    Article  Google Scholar 

  33. Mercieca-Bebber RL, Perreca A, King M, Macann A, Whale K, Soldati S, et al. Patient-reported outcomes in head and neck and thyroid cancer randomised controlled trials: a systematic review of completeness of reporting and impact on interpretation. Eur J Cancer. 2016;56:144–61. https://doi.org/10.1016/j.ejca.2015.12.025.

    Article  PubMed  Google Scholar 

  34. Silveira A, Gonçalves G, Sequeira T, et al. Computer-based quality-of-life monitoring in head and neck cancer patients: a validation model using the EORTC-QLQ C30 and EORTC- H&N35 Portuguese PC-software version. Acta Medica Port. 2011;24(S2):347–54.

    Google Scholar 

  35. Vélez CM, Villada Ramírez AC, Arias AC, Eslava-Schmalbach JH. Rasch model in the validation of the paediatric quality of life inventory™ 4.0 (PedsQL 4.0™) in Colombian children and adolescents. Rev Colom Psiquiatr. 2016;45(3):186–93. https://doi.org/10.1016/j.rcp.2015.12.002.

    Article  Google Scholar 

  36. Rosnah I, Mohd Zali MN, Noor Hassim I, Azmi MT. A tale of two construct validation analysis: Rasch model and exploratory factor analysis approach for Three-Factor Eating Questionnaire (TFEQ-R21) among Malaysian male workers. Med J Malaysia. 2015;70(3):169–76.

    CAS  PubMed  Google Scholar 

  37. Choi SH, Terrell JE, Fowler KE, McLean SA, Ghanem T, Wolf GT, et al. Socioeconomic and other demographic disparities predicting survival among head and neck cancer patients. PLoS One. 2016;11(3):1–27. https://doi.org/10.1371/journal.pone.

    Article  CAS  Google Scholar 

  38. Aloi J, Blair KS, Crum KI, Meffert H, White SF, Tyler PM, et al. Adolescents show differential dysfunctions related to alcohol and cannabis use disorder severity in emotion and executive attention neuro-circuitries. Neuroimage Clin. 2018;19:782–92. https://doi.org/10.1016/j.nicl.2018.06.005.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Zahodne LB, Stern Y, Manly JJ. Differing effects of education on cognitive decline in diverse elders with low versus high educational attainment. Neuropsychology. 2015;29(4):649–57. https://doi.org/10.1037/neu0000141.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

We acknowledge IPOP (Head and Neck Unity) and Fernando Pessoa University (Health Sciences Faculty & Science and Technology Faculty).

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Augusta Silveira PhD, MSc.

Ethics declarations

Conflict of Interest

The authors declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Additional information

This article is part of the Topical Collection on Head and Neck Cancer

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Silveira, A., Monteiro, E. & Sequeira, T. Head and Neck Cancer: Improving Patient-Reported Outcome Measures for Clinical Practice. Curr. Treat. Options in Oncol. 19, 59 (2018). https://doi.org/10.1007/s11864-018-0578-1

Download citation

  • Published:

  • DOI: https://doi.org/10.1007/s11864-018-0578-1

Keywords

Navigation