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To eat is to practice—managing eating problems after head and neck cancer

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Abstract

Purpose

The purpose of this qualitative study was twofold: (1) to explore head and neck cancer (HNC) survivors’ experiences of everyday life with eating problems after cancer treatment and (2) to explore their experiences of participating in a multidisciplinary residential rehabilitation program with a primary focus on physical, psychological, and social aspects of eating problems after treatment.

Methods

Semi-structured focus group interviews were conducted with 40 Danish HNC survivors who participated in a 5-day residential rehabilitation program with follow-up after 3 months. The transcribed interviews were analyzed through qualitative content analysis.

Results

Physical nutrition impact symptoms and unmet needs for support were frequent. Participants experienced a feeling of loss due to impaired eating abilities. Eating had become an obligation or a training situation, and the eating problems challenged the relationship with their relatives when well-meaning encouragement was perceived as a pressure. Social eating was a challenge, and this often led to social withdrawal. The residential program was a safe and supportive environment to practice eating skills, and participants benefited from meeting peers. The program provided participants with knowledge and skills that many of them had been missing during and after treatment.

Conclusions

Eating problems after treatment have substantial effects on the everyday life of HNC survivors. A multidisciplinary residential rehabilitation program may be beneficial to meet their rehabilitation needs.

Implications for Cancer Survivors

The results are useful for future planning of rehabilitation services and clinical studies that may contribute to improving current clinical practice and benefit HNC survivors.

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Abbreviations

HNC:

Head and neck cancer

NIS:

Nutrition impact symptoms

QOL:

Quality of life

References

  1. Crowder SL, Douglas KG, Yanina Pepino M, Sarma KP, Arthur AE. Nutrition impact symptoms and associated outcomes in post-chemoradiotherapy head and neck cancer survivors: a systematic review. J Cancer Surviv. 2018;12(4):479–94.

    Article  PubMed  Google Scholar 

  2. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018 Nov;68(6):394–424.

    Article  PubMed  Google Scholar 

  3. Jakobsen KK, Gronhoj C, Jensen DH, Karnov KKS, Agander TK, Specht L, et al. Increasing incidence and survival of head and neck cancers in Denmark: a nation-wide study from 1980 to 2014. Acta Oncol. 2018;57(9):1143–51.

    Article  PubMed  Google Scholar 

  4. Simcock R, Simo R. Follow-up and survivorship in head and neck cancer. Clin Oncol (R Coll Radiol). 2016;28(7):451–8.

    Article  CAS  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.

    Article  PubMed  PubMed Central  Google Scholar 

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

    Article  PubMed  Google Scholar 

  7. Patterson JM, McColl E, Wilson J, Carding P, Rapley T. Head and neck cancer patients’ perceptions of swallowing following chemoradiotherapy. Support Care Cancer. 2015;23(12):3531–8.

    Article  PubMed  Google Scholar 

  8. McQuestion M, Fitch M, Howell D. 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. 2011;15(2):145–51.

    Article  PubMed  Google Scholar 

  9. Ottosson S, Laurell G, Olsson C. The experience of food, eating and meals following radiotherapy for head and neck cancer: a qualitative study. J Clin Nurs. 2013;22(7–8):1034–43.

    Article  PubMed  Google Scholar 

  10. Larsson M, Hedelin B, Athlin E. Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nurs. 2007;30(4):324–34.

    Article  PubMed  Google Scholar 

  11. Einarsson S, Laurell G, Tiblom Ehrsson Y. Experiences and coping strategies related to food and eating up to two years after the termination of treatment in patients with head and neck cancer. Eur J Cancer Care (Engl). 2018;28(2):e12964.

  12. Payakachat N, Ounpraseuth S, Suen JY. Late complications and long-term quality of life for survivors (>5 years) with history of head and neck cancer. Head Neck. 2013;35(6):819–25.

    Article  PubMed  Google Scholar 

  13. Bower WF, Vlantis AC, Chung TM, Van Hasselt CA. Mode of treatment affects quality of life in head and neck cancer survivors: implications for holistic care. Acta Otolaryngol. 2010;130(10):1185–92.

    Article  PubMed  Google Scholar 

  14. Verdonck-de Leeuw IM, Buffart LM, Heymans MW, Rietveld DH, Doornaert P, de Bree R, et al. The course of health-related quality of life in head and neck cancer patients treated with chemoradiation: a prospective cohort study. Radiother Oncol. 2014;110(3):422–8.

    Article  PubMed  Google Scholar 

  15. Ramaekers BL, Joore MA, Grutters JP, van den Ende P, Jd J, Houben R, et al. The impact of late treatment-toxicity on generic health-related quality of life in head and neck cancer patients after radiotherapy. Oral Oncol. 2011;47(8):768–74.

    Article  PubMed  Google Scholar 

  16. Alvarez-Camacho M, Gonella S, Ghosh S, Kubrak C, Scrimger RA, Chu KP, et al. The impact of taste and smell alterations on quality of life in head and neck cancer patients. Qual Life Res. 2016;25(6):1495–504.

    Article  CAS  PubMed  Google Scholar 

  17. Isaksson J, Salander P, Lilliehorn S, Laurell G. Living an everyday life with head and neck cancer 2-2.5 years post-diagnosis—a qualitative prospective study of 56 patients. Soc Sci Med. 2016;154:54–61.

    Article  PubMed  Google Scholar 

  18. Roing M, Hirsch JM, Holmstrom I, Schuster M. Making new meanings of being in the world after treatment for oral cancer. Qual Health Res. 2009;19(8):1076–86.

    Article  PubMed  Google Scholar 

  19. Molassiotis A, Rogers M. Symptom experience and regaining normality in the first year following a diagnosis of head and neck cancer: a qualitative longitudinal study. Palliat Support Care. 2012;10(3):197–204.

    Article  PubMed  Google Scholar 

  20. Hu TW, Cooke M, McCarthy A. A qualitative study of the experience of oral cancer among Taiwanese men. Int J Nurs Pract. 2009;15(4):326–33.

    Article  PubMed  Google Scholar 

  21. Wells M. The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment. J Adv Nurs. 1998;28(4):840–8.

    Article  CAS  PubMed  Google Scholar 

  22. Tong MC, Lee KY, Yuen MT, Lo PS. Perceptions and experiences of post-irradiation swallowing difficulties in nasopharyngeal cancer survivors. Eur J Cancer Care (Engl). 2011;20(2):170–8.

    Article  CAS  Google Scholar 

  23. Nund RL, Ward EC, Scarinci NA, Cartmill B, Kuipers P, Porceddu SV. The lived experience of dysphagia following non-surgical treatment for head and neck cancer. Int J Speech Lang Pathol. 2014;16(3):282–9.

    Article  PubMed  Google Scholar 

  24. Charalambous A. Hermeneutic phenomenological interpretations of patients with head and neck neoplasm experiences living with radiation-induced xerostomia: the price to pay? Eur J Oncol Nurs. 2014;18(5):512–20.

    Article  PubMed  Google Scholar 

  25. Schaller A, Larsson B, Lindblad M, Liedberg GM. Experiences of pain: a longitudinal, qualitative study of patients with head and neck cancer recently treated with radiotherapy. Pain Manag Nurs. 2015;16(3):336–45.

    Article  PubMed  Google Scholar 

  26. Ganzer H, Rothpletz-Puglia P, Byham-Gray L, Murphy BA, Touger-Decker R. The eating experience in long-term survivors of head and neck cancer: a mixed-methods study. Support Care Cancer. 2015;23(11):3257–68.

    Article  PubMed  Google Scholar 

  27. McLafferty I. Focus group interviews as a data collecting strategy. J Adv Nurs. 2004;48(2):187–94.

    Article  PubMed  Google Scholar 

  28. So WKW, Wong CL, Choi KC, Chan CWH, Chan JCY, Law BMH, et al. A mixed-methods study of unmet supportive care needs among head and neck cancer survivors. Cancer Nurs. 2019;42(1):67–78.

    PubMed  Google Scholar 

  29. World Health Organization & World Bank. World report on disability. In: World Health Organization; 2011.

    Google Scholar 

  30. Cousins N, MacAulay F, Lang H, MacGillivray S, Wells M. A systematic review of interventions for eating and drinking problems following treatment for head and neck cancer suggests a need to look beyond swallowing and trismus. Oral Oncol. 2013;49(5):387–400.

    Article  PubMed  Google Scholar 

  31. Rodriguez AM, Komar A, Ringash J, Chan C, Davis AM, Jones J, et al. A scoping review of rehabilitation interventions for survivors of head and neck cancer. Disabil Rehabil. 2018;6:1–15.

    Google Scholar 

  32. Wall LR, Cartmill B, Ward EC, Hill AJ, Isenring E, Porceddu SV. Evaluation of a weekly speech pathology/dietetic service model for providing supportive care intervention to head and neck cancer patients and their carers during (chemo)radiotherapy. Support Care Cancer. 2016;24(3):1227–34.

    Article  PubMed  Google Scholar 

  33. Eades M, Murphy J, Carney S, Amdouni S, Lemoignan J, Jelowicki M, et al. Effect of an interdisciplinary rehabilitation program on quality of life in patients with head and neck cancer: review of clinical experience. Head Neck. 2013;35(3):343–9.

    Article  PubMed  Google Scholar 

  34. van den Brink JL, Moorman PW, de Boer MF, Pruyn JF, Verwoerd CD, van Bemmel JH. Involving the patient: a prospective study on use, appreciation and effectiveness of an information system in head and neck cancer care. Int J Med Inform. 2005;74(10):839–49.

    Article  PubMed  Google Scholar 

  35. Hammerlid E, Persson LO, Sullivan M, Westin T. Quality-of-life effects of psychosocial intervention in patients with head and neck cancer. Otolaryngol Head Neck Surg. 1999;120(4):507–16.

    Article  CAS  PubMed  Google Scholar 

  36. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–12.

    Article  CAS  PubMed  Google Scholar 

  37. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007 Dec;19(6):349–57.

    Article  PubMed  Google Scholar 

  38. Sundhedsstyrelsen [The Danish Health Authority]. Opfølgningsprogram for hoved- og halskræft [follow-up program in head and neck cancer]. 1.0. Sundhedsstyrelsen [The Danish Health Authority]; 2015.

  39. Carmody J, Olendzki B, Reed G, Andersen V, Rosenzweig P. A dietary intervention for recurrent prostate cancer after definitive primary treatment: results of a randomized pilot trial. Urology. 2008 Dec;72(6):1324–8.

    Article  PubMed  Google Scholar 

  40. Barak-Nahum A, Haim LB, Ginzburg K. When life gives you lemons: the effectiveness of culinary group intervention among cancer patients. Soc Sci Med. 2016 Oct;166:1–8.

    Article  PubMed  Google Scholar 

  41. Kraaijenga SAC, Molen LV, Stuiver MM, Takes RP, Al-Mamgani A, Brekel MWMVD, et al. Efficacy of a novel swallowing exercise program for chronic dysphagia in long-term head and neck cancer survivors. Head Neck. 2017;39(10):1943–61.

    Article  PubMed  Google Scholar 

  42. Tjørnhøj-Thomsen T, Hansen HP. The ritualization of rehabilitation. Med Anthropol. 2013;32(3):266–85.

    Article  PubMed  Google Scholar 

  43. Dieperink KB, Mark K, Mikkelsen TB. Marital rehabilitation after prostate cancer—a matter of intimacy. Int J Urol Nurs. 2016;10(1):21–9.

    Article  Google Scholar 

  44. Dieperink KB, Sigaard L, Larsen MH, Mikkelsen TB. Rehabilitation targeted late adverse effects after radiotherapy for cervical cancer—different gains in different settings. Clin Nurs Stud. 2018;6(2):9–16.

    Article  Google Scholar 

  45. Nund RL, Ward EC, Scarinci NA, Cartmill B, Kuipers P, Porceddu SV. Survivors’ experiences of dysphagia-related services following head and neck cancer: implications for clinical practice. Int J Lang Commun Disord. 2014;49(3):354–63.

    Article  PubMed  Google Scholar 

  46. Moore KA, Ford PJ, Farah CS. “I have quality of life...but...”: exploring support needs important to quality of life in head and neck cancer. Eur J Oncol Nurs. 2014;18(2):192–200.

    Article  CAS  PubMed  Google Scholar 

  47. Thuesen J, Rossau HK, Frausing S, Tang LH, Mikkelsen TB. Kræftrehabilitering i Danmark - kortlægning af praksis på hospitaler og i kommuner [Cancer rehabilitation in Denmark—a survey of practice at hospitals and in municipalities]. 2017;1.

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Acknowledgments

We wish to thank all study participants for their valuable contributions. Furthermore, we wish to thank the health care professionals and other staff at RcDallund and REHPA who delivered the targeted residential rehabilitation program. Finally, we thank Vicky L. Joshi, MSc, for proofreading the manuscript.

Funding

This study received external funding from Innovation Fund Denmark (grant no. 6171-00009B) and from Rigshospitalet’s and Odense University Hospital’s research fund for research collaboration between the two hospitals (grant no. 38-A2016).

Author information

Authors and Affiliations

  1. Department of Nursing and Nutrition, University College Copenhagen, Sigurdsgade 26, 2200, Copenhagen N, Denmark

    Marianne Boll Kristensen & Anne Marie Beck

  2. REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital and Department of Clinical Research, University of Southern Denmark, Vestergade 17, 5800, Nyborg, Denmark

    Marianne Boll Kristensen, Tina Broby Mikkelsen, Ann-Dorthe Zwisler & Karin B. Dieperink

  3. OPEN, Odense Patient data Explorative Network, Odense University Hospital, J.B. Winsløws Vej 9A, 5000, Odense C, Denmark

    Marianne Boll Kristensen

  4. Dietetics and Clinical Nutrition Research Unit, Herlev and Gentofte Hospital, Borgmester Ib Juuls Vej 50, 4, 2730, Herlev, Denmark

    Anne Marie Beck

  5. Department of Otorhinolaryngology, Head and Neck Surgery and Audiology, Rigshospitalet, Blegdamsvej 9, 2100, Copenhagen Ø, Denmark

    Irene Wessel

  6. Research Unit of Oncology, Department of Oncology, Odense University Hospital, Sdr. Boulevard 29, 5000, Odense C, Denmark

    Karin B. Dieperink

  7. Department of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 19.3, 5000, Odense C, Denmark

    Karin B. Dieperink

Authors
  1. Marianne Boll Kristensen
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  2. Tina Broby Mikkelsen
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  3. Anne Marie Beck
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  4. Ann-Dorthe Zwisler
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Corresponding author

Correspondence to Marianne Boll Kristensen.

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The authors declare that they have no conflict of interest.

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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.

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

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Kristensen, M.B., Mikkelsen, T.B., Beck, A.M. et al. To eat is to practice—managing eating problems after head and neck cancer. J Cancer Surviv 13, 792–803 (2019). https://doi.org/10.1007/s11764-019-00798-2

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  • DOI: https://doi.org/10.1007/s11764-019-00798-2

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