Abstract

Purpose: To understand the experience of distress and life engagement in people with head and neck cancer (HNC) in the years following treatment.

Method: Participants treated more than 5 years previously for HNC completed the National Comprehensive Cancer Network Distress Thermometer (DT) and Problem List and an interview to explore their experience of distress. Data from the DT were analysed descriptively, and interviews analysed qualitatively to extract core themes.

Results: Twenty-one participants were recruited and reported an average DT score of 3/10, with the most commonly reported problems related to physical (87%) and emotional challenges (57%). Thematic analysis of the interviews revealed three themes: (1) The experience of head and neck cancer is distressing; (2) Facilitators to adjustment and re-engagement, and; (3) “My (philosophical) approach was…”.

Conclusion: Low-level distress remained an ongoing issue for people beyond 5 years post HNC. This distress is related to the challenges of the disease, treatment, and ongoing side-effects. Coping strategies and mindset philosophy enabled participants to manage ongoing side-effects with the support of practical strategies and health professional support, highlighting the importance of ongoing survivorship engagement with services to address long-term need and care.

Keywords: Distress; Engagement in Daily Life; Head and Neck Cancer; Survivorship

References

1. Bray Freddie., et al. “Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries”. CA: A Cancer Journal for Clinicians 68.6 (2018): 394-424. 
2. American Cancer Society. “Cancer-facts-and-figures-2018”. In: American Cancer Society, editor. (2018).
3. Australia Institute of Health and Welfare. Cancer In Australia 2017. In: AIWH, editor. (2017).
4. Mitchell Alex J., et al. “Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies”. The Lancet Oncology 12.2 (2011): 160-174.
5. National Comprehensive Cancer Network. "NCCN Clinical Practice Guidelines in Oncology”. Distress management 2 (2019).
6. National Comprehensive Cancer Network. NCCN Guidlines 2017 Head and Neck Cancers (2017): 1-206.
7. Mehnert Anja., et al. “Prevalence of mental disorders, psychosocial distress and need for psychosocial support in cancer patients–study protocol of an epidemiological multi-center study”. BMC Psychiatry 12.1 (2012): 70.
8. Singer Susanne., et al. “Predictors of emotional distress in patients with head and neck cancer”. Head and Neck 34.2 (2012): 180-187.
9. Cohen Alexandra., et al. “Barriers to psychosocial oncology service utilization in patients newly diagnosed with head and neck cancer”. Psycho‐Oncology 27.12 (2018): 2786-2793.
10. Neilson Kate., et al. “A longitudinal study of distress (depression and anxiety) up to 18 months after radiotherapy for head and neck cancer”. Psycho‐Oncology 22.8 (2013): 1843-1848.
11. Verdonck‐de Leeuw and Irma M., et al. “Distress in spouses and patients after treatment for head and neck cancer”. The Laryngoscope 117.2 (2007): 238-241.
12. Habboush Yacob., et al. “Patient-reported distress and survival among patients receiving definitive radiation therapy”. Advances in Radiation Oncology 2.2 (2017): 211-219.
13. Wells Mary., et al. “Distress, concerns and unmet needs in survivors of head and neck cancer: a cross‐sectional survey”. European Journal of Cancer Care 24.5 (2015): 748-760.
14. Nund Rebecca L., et al. “The lived experience of dysphagia following non-surgical treatment for head and neck cancer”. International Journal of Speech-Language Pathology 16.3 (2014): 282-289.
15. Isaksson, Joakim., et al. “Living an everyday life with head and neck cancer 2–2.5 years post-diagnosis–A qualitative prospective study of 56 patients”. Social Science and Medicine 154 (2016): 54-61.
16. Thorne S. Interpretive Description. California: Left Coast Press, Inc; (2008).
17. Cartmill Bena., et al. “A prospective investigation of swallowing, nutrition, and patient-rated functional impact following altered fractionation radiotherapy with concomitant boost for oropharyngeal cancer”. Dysphagia 27.1 (2012): 32-45.
18. Cartmill Bena., et al. “Long-term functional outcomes and patient perspective following altered fractionation radiotherapy with concomitant boost for oropharyngeal cancer”. Dysphagia 27.4 (2012): 481-490.
19. Patton MQ and Patton MQ. Qualitative research and evaluation methods. Thousand Oaks, Calif: Sage Publications (2002).
20. Morse Janice M., ed. Critical issues in qualitative research methods. Sage (1994): 22-43.
21. Grassi Luigi., et al. “Screening for distress in cancer patients: a multicenter, nationwide study in Italy”. Cancer 119.9 (2013): 1714-1721.
22. Mitchell Alex J. "Short screening tools for cancer-related distress: a review and diagnostic validity meta-analysis”. Journal of the National Comprehensive Cancer Network 8.4 (2010): 487-494.
23. So WKW., et al. “Quality-of-life among head and neck cancer survivors at one year after treatment–a systematic review”. European Journal of Cancer 48.15 (2012): 2391-2408.
24. Ichikura Kanako., et al. “Persistence of psychological distress and correlated factors among patients with head and neck cancer”. Palliative and Supportive Care 14.1 (2016): 42-51.
25. Rogers Simon N., et al. “Patients’ perception of the financial impact of head and neck cancer and the relationship to health related quality of life”. British Journal of Oral and Maxillofacial Surgery 50.5 (2012): 410-416. 
26. Kjær Trille., et al. “Affiliation to the work market after curative treatment of head-and-neck cancer: a population-based study from the DAHANCA database”. Acta Oncologica 52.2 (2013): 430-439. 
27. Wilson, Anne, Hamish Holewa, and Pam McGrath. "Who are our patients?: a socio-demographic profile of head and neck cancer patients”. (2003).
28. Buckwalter Andrea E., et al. “Patient-reported factors associated with discontinuing employment following head and neck cancer treatment”. Archives of Otolaryngology–Head and Neck Surgery 133.5 (2007): 464-470.
29. Sherman Allen C., et al. “Coping with head and neck cancer during different phases of treatment”. Head and Neck: Journal for the Sciences and Specialties of the Head and Neck 22.8 (2000): 787-793.
30. Budach Volker. "Comprehensive overview: definitive radiotherapy and concurrent chemoradiation in locally advanced head and neck cancer”. Critical Issues in Head and Neck Oncology. Springer Cham (2017): 151-176.

Citation

Citation: Jodie Nixon., et al. “A Mixed Methods Study Exploring the Experience of Distress and Engagement in Daily Life in People with Head and Neck Cancer Beyond 5 Years Post-Treatment". Acta Scientific Otolaryngology 2.1 (2020): 15-22.

Copyright

Copyright: © 2020 Jodie Nixon., et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.