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Symptom experience and regaining normality in the first year following a diagnosis of head and neck cancer: A qualitative longitudinal study

Published online by Cambridge University Press:  22 May 2012

Alex Molassiotis*
Affiliation:
School of Nursing, Midwifery and Social Work; University of Manchester Christie NHS Foundation Trust, Manchester, United Kingdom
Margaret Rogers
Affiliation:
School of Nursing, Midwifery and Social Work; University of Manchester
*
Address correspondence and reprint requests to: Alex Molassiotis, University of Manchester, School of Nursing, University Place, Manchester M13 9PL, United Kingdom. E-mail: alex.molassiotis@manchester.ac.uk

Abstract

Introduction:

Symptom experiences and their interference with life are not well-researched in head and neck cancer patients. The aim of the study was to explore and understand the experience of receiving treatment for head and neck cancer with particular focus on symptom experiences over a one year period from diagnosis.

Methods:

A qualitative study design was used with a heterogeneous sample of 16 patients with head and neck cancer. Interviews, conducted at four time points over 12 months, provided a total of 50 interview datasets.

Results:

Key themes derived include nutritional concerns, tiredness, and experiences related to the radiotherapy mask and regaining normality. These data highlight issues of importance in the first year of living with head and neck cancer: impact of nutritional changes on the lives of patients, including weight loss, dysphagia, xerostomia and taste changes; debilitation from ongoing fatigue; unpreparedness for and distress from the radiotherapy mask; and attempts to maintain a normal life amidst the interference of symptoms.

Conclusion:

Multitude of symptoms impact the patients' life, particularly nutritional symptoms and fatigue, and interfere with the patients' survivorship and quality of life. The changing nature of symptoms over the first year from diagnosis in head and neck cancer patients and the identified issues in the attempt to normalize their lives need to be incorporated more fully into the supportive care of head and neck cancer patients in order to improve their experience and enhance their survivorship.

Type
Original Articles
Copyright
Copyright © Cambridge University Press 2012

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References

REFERENCES

Capuano, G., Gentile, P.C., Bianciardi, F., et al. (2010). Prevalence and influence of malnutrition on quality of life and performance status in patients with locally advanced head and neck cancer before treatment. Supportive Care in Cancer, 18, 433437.CrossRefGoogle ScholarPubMed
Cramp, F. & Daniel, J (2008). Exercise for the management of cancer-related fatigue in adults. Cochrane Database System Review, 16, CD006145.CrossRefGoogle Scholar
Dooks, P., McQuestion, M., Goldstein, D., et al. (2010). Experiences of Patients with Laryngectomies As They Reintegrate into Their Community. Supportive Care in Cancer, doi:10.1007/s00520-011-1101-04.Google Scholar
Dropkin, M. (1998). Disfigurement and dysfunction with head and neck cancer surgery. ORL-Head Neck Nursing, 16, 2829Google Scholar
Dropkin, M. (2001). Anxiety, coping strategies, and coping behaviours in undergoing head and neck cancer surgery. Cancer Nursing, 24, 143148.CrossRefGoogle ScholarPubMed
García-Peris, P., Parón, L., Velasco, C., et al. (2007). Long-term prevalence of oropharyngeal dysphagia in head and neck cancer patients: Impact on quality of life. Clinical Nutrition, 26, 710717.CrossRefGoogle ScholarPubMed
Goedendorp, M.M., Gielissen, M.F., Verhagen, C.A., et al. (2009). Psychosocial interventions for reducing fatigue during cancer treatment in adults. Cochrane Database System Review, 21, CD006953.Google Scholar
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105112.CrossRefGoogle ScholarPubMed
Jager-Wittenaar, H., Dijkstra, P.U., Vissink, A., et al. (2011). Malnutrition and quality of life in patients treated for oral or oropharyngeal cancer. Head & Neck, 33, 490496.CrossRefGoogle ScholarPubMed
Johansson, E., Wilson, B., Brunton, L., et al. (2010). Symptoms before, during, and 14 months after the beginning of treatment as perceived by patients with lymphoma. Oncology Nursing Forum, 37, E105-E113.CrossRefGoogle ScholarPubMed
Larsson, M., Hedelin, B. & Athlin, E. (2003). Lived experiences of eating problems for patients with head and neck cancer during radiotherapy. Journal of Clinical Nursing, 12, 562570.CrossRefGoogle ScholarPubMed
Larsson, M., Hedelin, B., Johansson, I., et al. (2005). Eating problems and weight loss for patients with head and neck cancer: a chart review from diagnosis until one year after treatment. Cancer Nursing, 28, 425435.CrossRefGoogle ScholarPubMed
Larsson, M., Hedelin, B. & Athlin, E. (2007a). Needing a hand to hold: lived experiences during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Cancer Nursing, 30, 324334.CrossRefGoogle Scholar
Larsson, M., Hedelin, B. & Athlin, E. (2007b). A supportive nursing care clinic: Conceptions of patients with head and neck cancer. European Journal of Oncology Nursing, 11, 4959.CrossRefGoogle ScholarPubMed
Leventhal, H. & Johnson, J.E. (1983). Laboratory and field experimentation: Development of a theory of self-regulation. In Behavioral science and nursing theory. Wooldridge, J.P., Schmitt, M.H., Skipper, J.K., Leonard, R.C. (eds.), 189264.St. Louis: Mosby.Google Scholar
Lovell, S.J., Wong, H.B., Loh, K.S., et al. (2005). Impact of dysphagia on quality-of-life in nasopharyngeal carcinoma. Head & Neck, 27, 864872.CrossRefGoogle ScholarPubMed
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. European Journal of Oncology Nursing, 15, 145151.CrossRefGoogle ScholarPubMed
Miles, M.B. & Huberman, A.M. (1994). Qualitative Data Analysis: An Expanded Sourcebook. Thousand Oaks: Sage.Google Scholar
Molassiotis, A., Sylt, P. & Diggins, H. (2007). The management of cancer-related fatigue after chemotherapy with acupuncture and acupressure: A randomised controlled trial. Complementary Therapies in Medicine, 15, 228237.CrossRefGoogle ScholarPubMed
Molassiotis, A., Zheng, Y., Denton-Cardew, L., et al. (2010a). Symptoms experienced by cancer patients during the first year from diagnosis: Patient and informal caregiver ratings and agreement. Palliative & Supportive Care, 8, 313324.CrossRefGoogle ScholarPubMed
Molassiotis, A., Wilson, B., Brunton, L., et al. (2010b). Symptom experience in patients with primary brain tumours: A longitudinal exploratory study. European Journal of Oncology Nursing, 14, 410–116.CrossRefGoogle ScholarPubMed
Molassiotis, A., Lowe, M., Blackhall, F., et al. (2011). A qualitative exploration of a respiratory distress symptom cluster in lung cancer: Cough, breathlessness and fatigue. Lung Cancer, 71, 94102.CrossRefGoogle ScholarPubMed
O'Baugh, J., Wilkes, L.M., Luke, S., et al. (2003). “Being positive”: perceptions of patients with cancer and their nurses. Journal of Advance Nursing, 44, 262270.Google Scholar
Reisfield, G.M. & Wilson, G.R. (2004). Use of metaphor in the discourse on cancer. Journal of Clinical Oncology, 22, 40244027.CrossRefGoogle Scholar
Rogers, S.N., Ahad, S.A. & Murphy, A.P. (2007). A structured review and theme analysis of papers published on “quality of life” in head and neck cancer: 2000–2005. Oral Oncology, 43, 843868.CrossRefGoogle ScholarPubMed
Semple, C.J., Dunwoody, L., George Kernohan, W., et al. (2008). Changes and challenges to patients' lifestyle patterns following treatment for head and neck cancer. Journal of Advance Nursing, 63, 8593.CrossRefGoogle ScholarPubMed
Sood, A., Barton, D.L., Bauer, B.A., et al. (2007). A critical review of complementary therapies for cancer-related fatigue. Integrative Cancer Therapies, 6, 813.CrossRefGoogle ScholarPubMed
Tschiesner, U., Linseisen, E., Coenen, M., et al. (2009). Evaluating sequelae after head and neck cancer from the patient perspective with the help of the International Classification of Functioning, Disability and Health. European Archive of Otorhinolaryngology, 266, 425436.Google Scholar
Tong, M.C., Lee, K.Y., Yuen, M.T., et al. (2011). Perceptions and experiences of post-irradiation swallowing difficulties in nasopharyngeal cancer survivors. European Journal of Cancer Care, 20, 170178.CrossRefGoogle ScholarPubMed