SpringerLink
Log in

Quality of life, co** strategies, and supportive care needs in head and neck cancer survivors: a qualitative study

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

The purpose of this qualitative study was to better understand the lived experience of head and neck cancer (HNC) survivors between 6 months to 9 years post-radiation. Quality of life, co** strategies, concerns for the future, and preferences for supportive care were explored.

Methods

Semi-structured interviews were conducted in 31 HNC survivors from a Midwestern hospital. Interviews were recorded, transcribed verbatim and analyzed using qualitative thematic analysis.

Results

Survivors described restrictions on daily living, social eating, and financial concerns. Despite these restrictions, survivors reported an overall high mentality and enjoyment of life. Co** considerations included adapting to a new normal and increased involvement in cancer support and faith groups. Preferences for supportive care included receiving more information about and being more involved in the treatment care plan, referrals to therapy and support groups, and more comprehensive follow-up in survivorship.

Conclusions

While long-term HNC survivors adapt to daily living restrictions, a high proportion continue to have unmet needs. This data can guide the development of HNC survivorship interventions to inform optimal clinical guidelines based on patients’ perceived needs. This qualitative study uncovered distinct perceived needs of HNC survivors which can inform future service development. Incorporating referrals to supportive care services including speech language pathologist, physical therapists, and dietitians into the standard of care before, during, and after treatment would assist survivors in adapting to life after treatment and managing long-term health consequences of their disease.

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

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
EUR 32.99 /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 includes VAT (Germany)

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

The dataset generated and analyzed in the current study are not publicly available due to the sensitive nature of some of the qualitative interview responses, but deidentified data are available from the corresponding author on reasonable request.

References

  1. Siegel RL, Miller KD, Jemal A (2017) Cancer Statistics, 2017. CA Cancer J Clin 67(1):7–30

    Article  Google Scholar 

  2. Crowder SL, Douglas KG, Yanina Pepino M, Sarma KP, Arthur AE (2018) Nutrition impact symptoms and associated outcomes in post-chemoradiotherapy head and neck cancer survivors: a systematic review. J Cancer Surviv 12(4):479–494

    Article  Google Scholar 

  3. Young D, **ao CC, Murphy B, Moore M, Fakhry C, Day TA (2015) Increase in head and neck cancer in younger patients due to human papillomavirus (HPV). Oral Oncol 51(8):727–730

    Article  Google Scholar 

  4. Crowder SL, Sarma KP, Mondul AM, Chen YT, Li Z, Pepino MY, Zarins KR, Wolf GT, Rozek LS, Arthur AE (2019) Pretreatment dietary patterns are associated with the presence of nutrition impact symptoms 1 year after diagnosis in patients with head and neck cancer. Cancer Epidemiol Biomark Prev 28:1652–1659

    Article  Google Scholar 

  5. D’Souza V, Serrao M, Watson E, Blouin E, Zeitouni A, Allison PJ (2018) Information service in head and neck cancer care-a qualitative study. Support Care Cancer 26(1):91–98

    Article  Google Scholar 

  6. Giuliani M, McQuestion M, Jones J, Papadakos J, le LW, Alkazaz N, Cheng T, Waldron J, Catton P, Ringash J (2016) Prevalence and nature of survivorship needs in patients with head and neck cancer. Head Neck 38(7):1097–1103

    Article  Google Scholar 

  7. Martino R, Ringash J (2008) Evaluation of quality of life and organ function in head and neck squamous cell carcinoma. Hematol Oncol Clin North Am 22(6):1239–1256 x

    Article  Google Scholar 

  8. Morton RP (2012) Toward comprehensive multidisciplinary care for head and neck cancer patients: quality of life versus survival. Otolaryngol Head Neck Surg 147(3):404–406

    Article  Google Scholar 

  9. McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2010) Predictors of change in unmet supportive care needs in cancer. Psychooncology 19(5):508–516

    Article  CAS  Google Scholar 

  10. Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A (2009) Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. J Clin Oncol 27(36):6172–6179

    Article  Google Scholar 

  11. Payakachat N, Ounpraseuth S, Suen JY (2013) Late complications and long-term quality of life for survivors (>5 years) with history of head and neck cancer. Head Neck 35(6):819–825

    Article  Google Scholar 

  12. Verdonck-de Leeuw IM, Buffart LM, Heymans MW, Rietveld DH, Doornaert P, de Bree R, Buter J, Aaronson NK, Slotman BJ, Leemans CR, Langendijk JA (2014) The course of health-related quality of life in head and neck cancer patients treated with chemoradiation: a prospective cohort study. Radiother Oncol 110(3):422–428

    Article  Google Scholar 

  13. Ramaekers BL et al (2011) The impact of late treatment-toxicity on generic health-related quality of life in head and neck cancer patients after radiotherapy. Oral Oncol 47(8):768–774

    Article  Google Scholar 

  14. Klein J, Livergant J, Ringash J (2014) Health related quality of life in head and neck cancer treated with radiation therapy with or without chemotherapy: a systematic review. Oral Oncol 50(4):254–262

    Article  Google Scholar 

  15. Oppenheim AN (1992) Questionnaire design, interviewing and attitude measurement. Pinter

  16. Braun V, Clarke V (2006) Using thematic analysis is psychology. Qual Res Psychol 3:77–101

    Article  Google Scholar 

  17. Terrell JE, Ronis DL, Fowler KE, Bradford CR, Chepeha DB, Prince ME, Teknos TN, Wolf GT, Duffy SA (2004) Clinical predictors of quality of life in patients with head and neck cancer. Arch Otolaryngol Head Neck Surg 130(4):401–408

    Article  Google Scholar 

  18. Murphy BA, Ridner S, Wells N, Dietrich M (2007) Quality of life research in head and neck cancer: a review of the current state of the science. Crit Rev Oncol Hematol 62(3):251–267

    Article  Google Scholar 

  19. Murphy BA (2009) Late treatment effects: reframing the questions. Lancet Oncol 10(6):530–531

    Article  Google Scholar 

  20. Ganzer H, Rothpletz-Puglia P, Byham-Gray L, Murphy BA, Touger-Decker R (2015) The eating experience in long-term survivors of head and neck cancer: a mixed-methods study. Support Care Cancer 23:3257–3268

    Article  Google Scholar 

  21. Ottosson S, Laurell G, Olsson C (2013) The experience of food, eating and meals following radiotherapy for head and neck cancer; a qualitative study. J Clin Nurs 22:1034–1043

    Article  Google Scholar 

  22. Larsson M, Hedelin B, Athlin E (2007) Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nurs 30(4):324–334

    Article  Google Scholar 

  23. Swore Fletcher B, Cohen MZ, Schumacher K, Lydiatt W (2012) A blessing and a curse: head and neck cancer survivors' experiences. Cancer Nurs 35(2):126–132

    Article  Google Scholar 

  24. Semple CJ, Dunwoody L, George Kernohan W, McCaughan E, Sullivan K (2008) Changes and challenges to patients’ lifestyle patterns following treatment for head and neck cancer. J Adv Nurs 63(1):85–93

    Article  Google Scholar 

  25. Wells M (1998) The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment. J Adv Nurs 28(4):840–848

    Article  CAS  Google Scholar 

  26. Larsson M, Hedelin B, Athlin E (2003) Lived experiences of eating problems for patients with head and neck cancer during radiotherapy. J Clin Nurs 12(4):562–570

    Article  Google Scholar 

  27. McQuestion M, Fitch M, Howell D (2011) The changed meaning of food: Physical, social and emotional loss for patients having received radiation treatment for head and neck cancer. Eur J Oncol Nurs 15(2):145–151

    Article  Google Scholar 

  28. So WKW, Wong CL, Choi KC, Chan CWH, Chan JCY, Law BMH, Wan RWM, Mak SSS, Ling WM, Ng WT, Yu BWL (2019) A mixed-methods study of unmet supportive care needs among head and neck cancer survivors. Cancer Nurs 42(1):67–78

    Article  Google Scholar 

  29. Henry M, Bdira A, Cherba M, Lambert S, Carnevale FA, MacDonald C, Hier M, Zeitouni A, Kost K, Mlynarek A, Black M, Rosberger Z, Frenkiel S (2016) Recovering function and surviving treatments are primary motivators for health behavior change in patients with head and neck cancer: qualitative focus group study. Palliat Support Care 14(4):364–375

    Article  Google Scholar 

  30. Wells M, Semple CJ, Lane C (2015) A national survey of healthcare professionals' views on models of follow-up, holistic needs assessment and survivorship care for patients with head and neck cancer. Eur J Cancer Care (Engl) 24(6):873–883

    Article  CAS  Google Scholar 

  31. Taberna M, Gil Moncayo F, Jané-Salas E, Antonio M, Arribas L, Vilajosana E, Peralvez Torres E, Mesía R (2020) The multidisciplinary team (MDT) approach and quality of care. Front Oncol 10:85

    Article  Google Scholar 

Download references

Funding

This study was supported by an Academy of Nutrition and Dietetics Colgate Palmolive Fellowship in Nutrition and Oral Health, an USDA National Institute of Food and Agriculture, Hatch project 1011487, a Division of Nutritional Sciences Vision 20/20 Grant, and a Carle-Illinois Cancer Scholars for Translational and Applied Research Fellowship. SC was supported by NCI Cancer Prevention and Control Training Grant: 5T32CA090314-17 and Carle Illinois Cancer Scholars for Translational and Applied Research Fellowship.

Author information

Authors and Affiliations

  1. Department of Food Science and Human Nutrition, University of Illinois at Urbana-Champaign, 386 Bevier Hall 905 S Goodwin Ave, Urbana, IL, 61801, USA

    Sylvia L. Crowder, Natasha Najam & Anna E. Arthur

  2. Department of Health Outcomes and Behavior, Moffitt Cancer Center, 4117 E Fowler Ave., Tampa, FL, 33617, USA

    Sylvia L. Crowder

  3. Carle Cancer Center, Carle Foundation Hospital, 602 W University Ave., Urbana, IL, 61801, USA

    Kalika P. Sarma

  4. Family Resiliency Center and Department of Human Development and Family Studies, University of Illinois at Urbana-Champaign, 1016B Doris Kelley Christopher Hall. 904 West Nevada Street., Urbana, IL, 61801, USA

    Barbara H. Fiese

Authors
  1. Sylvia L. Crowder
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Natasha Najam
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Kalika P. Sarma
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Barbara H. Fiese
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Anna E. Arthur
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

SC, KS, and AA designed the study. SC and AA contributed to the development of the topic guide. SC collected the data. SC and NN performed data analysis. SC wrote the first draft of the manuscript with contributions from all authors. All authors reviewed and commented on subsequent drafts of the manuscript.

Corresponding author

Correspondence to Anna E. Arthur.

Ethics declarations

Competing interests

The authors declare that they have no competing interests.

Ethics approval

The study was approved by the University of Illinois and Carle Foundation Hospital IRB and was performed in accordance with the ethical standards as laid down in the 1964 Declarations of Helsinki and its later amendments or compared ethical standards.

Consent to participate

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

Consent for publication

N/A

Code availability

Dedoose

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

ESM 1

(DOCX 30 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Crowder, S.L., Najam, N., Sarma, K.P. et al. Quality of life, co** strategies, and supportive care needs in head and neck cancer survivors: a qualitative study. Support Care Cancer 29, 4349–4356 (2021). https://doi.org/10.1007/s00520-020-05981-1

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-020-05981-1

Keywords

Search

Navigation