THE EXPERIENCES OF ORAL CANCER PATIENTS: A NARRATIVE REVIEW
Keywords:Oral Cancer, Patients, Experiences, Physical, Psychological, Social
This is a critical review of the current evidence on patients’ experiences with oral cancer. The impact on the quality of life and implications to clinical practice and research were also discussed. A comprehensive search of three databases, PubMed, Scopus, and Google Scholar was undertaken. The search was restricted to English-language primary research papers from 2009 till 2019. The following keywords were used: mouth neoplasms, patients, experiences, oral cancer, physical, social, psychological. A total of 173 studies were retrieved using the search strategy. After removing duplicate reports and scrutinising those based on title and abstract, 68 studies were shortlisted for full text review. Three major themes emerged from the literature: (1) physical experiences of oral cancer patients, (2) psychological experiences of oral cancer patients, and (3) social experiences of oral cancer patients. Experiences of oral cancer patients are complex and subjective, and phases of physical, psychological, and social experiences of oral cancer have not been explored in detail. However, there is evidence that experiences such as pain, facial alterations, body image disturbances, anxiety, depression, social avoidance, social support, and financial implications affect patients’ quality of life. This review underlines the importance of further research to look into the type of support needed to address various experiences of oral cancer patients.
World Health Organization. ICD-10: International Statistical Classification of Diseases and Related Health Problems 10th Revision. Geneva: World Health Organization 2011.
Bray F, Ferlay J, Soerjomataram I, et al. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 2018; 68(6):394-424.
Warnakulasuriya S. Global epidemiology of oral and oropharyngeal cancer. Oral Oncol 2009; 45(4-5):309-16.
Rivera C. Essentials of oral cancer. Int J Clin Exp Pathol 2015; 8(9):11884-94.
Chinn SB, Myers JN. Oral cavity carcinoma: Current management, controversies, and future directions. J Clin Oncol 2015; 33(29):3269-76.
Kerawala C, Roques T, Jeannon JP, et al. Oral cavity and lip cancer: United Kingdom National Multidisciplinary Guidelines. J Laryngol Otol 2016; 130(S2):S83-S9.
Wong HM. Oral complications and management strategies for patients undergoing cancer therapy. ScientificWorldJournal 2014; 2014:581795. doi: 10.1155/2014/.
Barber B, Dergousoff J, Nesbitt M, et al. Depression as a predictor of postoperative functional performance status (PFPS) and treatment adherence in head and neck cancer patients: a prospective study. J Otolaryngol Head Neck Surg 2015; 44:38.
Chen SC, Tsai MC, Liu CL, et al. Support needs of patients with oral cancer and burden to their family caregivers. Cancer Nurs 2009; 32(6):473-81.
Rigoni L, Bruhn RF, De Cicco R, et al. Quality of life impairment in patients with head and neck cancer and their caregivers: a comparative study. Braz J Otorhinolaryngol 2016; 82(6):680-6.
Goswami S, Gupta SS. How cancer of oral cavity affects the family caregivers? - A cross-sectional study in Wardha, India, using the Caregiver Quality of Life Index - Cancer questionnaire. South Asian J Cancer 2020; 9(1):62-5.
Zabora J, BrintzenhofeSzoc K, Curbow B, et al. The prevalence of psychological distress by cancer site. Psychooncology 2001; 10(1):19-28.
García-Peris P, Parón L, Velasco C, et al. Long-term prevalence of oropharyngeal dysphagia in head and neck cancer patients: Impact on quality of life. Clin Nutr 2007; 26(6):710-7.
Semple CJ, Dunwoody L, George Kernohan W, et al. Changes and challenges to patients' lifestyle patterns following treatment for head and neck cancer. J Adv Nurs 2008; 63(1):85-93.
Chandu A, Smith AC, Rogers SN. Health-related quality of life in oral cancer: a review. J Oral Maxillofac Surg 2006; 64(3):495-502.
World Health Organization. WHOQOL: Measuring Quality Life. Geneva: World Health Organization 1997.
Griffiths MJ, Humphris GM, Skirrow PM, et al. A qualitative evaluation of patient experiences when diagnosed with oral cancer recurrence. Cancer Nurs 2008; 31(4):E11-7.
Scott SE, Grunfeld EA, Main J, et al. Patient delay in oral cancer: a qualitative study of patients' experiences. Psychooncology 2006; 15(6):474-85.
Abbas S, Tariq MUU, Raheem A, et al. Assessment of factors affecting quality of life in oral squamous cell carcinoma patients using University of Washington Quality of Life Questionnaire. Cureus 2019; 11(1):e3904.
Cheng CH, Wang TJ, Lin YP, et al. The illness experience of middle-aged men with oral cancer. J Clin Nurs 2013; 22(23-24):3549-56.
Loorents V, Rosell J, Willner HS, et al. Health-related quality of life up to 1 year after radiotherapy in patients with head and neck cancer (HNC). Springerplus 2016; 5(1):669. doi: 10.1186/s40064-016-2295-1.
Maciejewski O, Smeets R, Gerhards F, et al. Gender specific quality of life in patients with oral squamous cell carcinomas. Head Face Med 2010; 6(21).
Kanchan S, Pushpanjali K, Tejaswini BD. Challenges faced by patients undergoing radiotherapy for oral cancer: A qualitative study. Indian J Palliat Care 2019; 25(3):436-9.
Chen SC, Liao CT, Chang JTC. Orofacial pain and predictors in oral squamous cell carcinoma patients receiving treatment. Oral Oncol 2011; 47(2):131-5.
Viana TSA, de Barros Silva PG, Pereira KMA, et al. Prospective evaluation of quality of life in patients undergoing primary surgery for oral cancer: Preoperative and postoperative analysis. Asian Pac J Cancer Prev 2017; 18(8):2093-100.
Chen YH, Liang WA, Hsu CY, et al. Functional outcomes and quality of life after a 6-month early intervention program for oral cancer survivors: a single-arm clinical trial. PeerJ 2018; 6:e4419.
Haisfield-Wolfe ME, McGuire DB, Soeken K, et al. Prevalence and correlates of symptoms and uncertainty in illness among head and neck cancer patients receiving definitive radiation with or without chemotherapy. Support Care Cancer 2012; 20(8):1885-93.
de Melo NB, de Sousa VM, Bernardino IM, et al. Oral health related quality of life and determinant factors in patients with head and neck cancer. Med Oral Patol Oral Cir Bucal 2019; 24(3):e281-e9.
Chen SC. Life experiences of Taiwanese oral cancer patients during the postoperative period. Scand J Caring Sci 2012; 26(1):98-103.
Rogers SN, Cleator AJ, Lowe D, et al. Identifying pain-related concerns in routine follow-up clinics following oral and oropharyngeal cancer. World J Clin Oncol 2012; 3(8):116-25.
Pateman KA, Ford PJ, Batstone MD, et al. Coping with an altered mouth and perceived supportive care needs following head and neck cancer treatment. Support Care Cancer 2015; 23(8):2365-73.
Astrup GL, Rustøen T, Hofsø K, et al. Symptom burden and patient characteristics: Association with quality of life in patients with head and neck cancer undergoing radiotherapy. Head Neck 2017; 39(10):2114-26.
Macedo DR, Anjos ACY. Experience of radiotherapy in head and neck. RGO, Rev Gaúch Odontol 2019; 67:e20190026.
Patterson JM, McColl E, Wilson J, et al. Head and neck cancer patients' perceptions of swallowing following chemoradiotherapy. Support Care Cancer 2015; 23(12):3531-8.
Ganzer H, Rothpletz-Puglia P, Byham-Gray L, et al. The eating experience in long-term survivors of head and neck cancer: a mixed-methods study. Support Care Cancer 2015; 23(11):3257-68.
Osthus AA, Aarstad AKH, Olofsson J, et al. Head and neck specific Health Related Quality of Life scores predict subsequent survival in successfully treated head and neck cancer patients: a prospective cohort study. Oral Oncol 2011; 47(10):974-9.
Airoldi M, Garzaro M, Raimondo L, et al. Functional and psychological evaluation after flap reconstruction plus radiotherapy in oral cancer. Head Neck 2011; 33(4):458-68.
Costa EF, Nogueira TE, de Souza Lima NC, et al. A qualitative study of the dimensions of patients' perceptions of facial disfigurement after head and neck cancer surgery. Spec Care Dentist 2014; 34(3):114-21.
Fingeret MC, Yuan Y, Urbauer D, et al. The nature and extent of body image concerns among surgically treated patients with head and neck cancer. Psychooncology 2012; 21(8):836-44.
Fingeret MC, Hutcheson KA, Jensen K, et al. Associations among speech, eating, and body image concerns for surgical patients with head and neck cancer. Head Neck 2013; 35(3):354-60.
Mayre-Chilton KM, Talwar BP, Goff LM. Different experiences and perspectives between head and neck cancer patients and their care-givers on their daily impact of a gastrostomy tube. J Hum Nutr Diet 2011; 24(5):449-59.
Röing M, Hirsch JM, Holmström I, et al. Making new meanings of being in the world after treatment for oral cancer. Qual Health Res 2009; 19(8):1076-86.
McQuestion M, Fitch M. Patients' experience of receiving radiation treatment for head and neck cancer: Before, during and after treatment. Can Oncol Nurs J 2016; 26(4):325-35.
Wan Leung S, Lee TF, Chien CY, et al. Health-related quality of life in 640 head and neck cancer survivors after radiotherapy using EORTC QLQ-C30 and QLQ-H&N35 questionnaires. BMC Cancer 2011; 11:128. doi:10.1186/471-2407-11-128.
Fingeret MC, Vidrine DJ, Reece GP, et al. Multidimensional analysis of body image concerns among newly diagnosed patients with oral cavity cancer. Head Neck 2010; 32(3):301-9.
Foxwell KR, Scott SE. Exploring the concerns and needs of patients with terminal head and neck cancer and their caregivers. Social Science & Dentistry 2010; 1(2):88-96.
Pierre CS, Dassonville O, Chamorey E, et al. Long-term quality of life and its predictive factors after oncologic surgery and microvascular reconstruction in patients with oral or oropharyngeal cancer. Eur Arch Otorhinolaryngol 2014; 271(4):801-7.
Jager-Wittenaar H, Dijkstra PU, Vissink A, et al. Malnutrition and quality of life in patients treated for oral or oropharyngeal cancer. Head Neck 2011; 33(4):490-6.
Henry M, Habib L-A, Morrison M, et al. Head and neck cancer patients want us to support them psychologically in the posttreatment period: Survey results. Palliat Support Care 2014; 12(6):481-93.
Björklund M, Sarvimäki A, Berg A. Living with head and neck cancer: a profile of captivity. Journal of Nursing and Healthcare of Chronic Illness 2010; 2(1):22–31.
Koizumi A, Matsushima E, Mochizuki Y, et al. Changes in the psychological characteristics of oral cancer patients in the perioperative period: a quantitative evaluation. J Med Dent Sci 2013; 60(1):41-53.
Aarstad AK, Beisland E, Aarstad HJ. Personality, choice of coping and T stage predict level of distress in head and neck cancer patients during follow-up. Eur Arch Otorhinolaryngol 2012; 269(9):2121-8.
Chen SC, Lai YH, Liao CT, et al. Supportive care needs in newly diagnosed oral cavity cancer patients receiving radiation therapy. Psychooncology 2013; 22(6):1220-8.
Elani HW, Allison PJ. Coping and psychological distress among head and neck cancer patients. Support Care Cancer 2011; 19(11):1735-41.
Lee MS, Nelson AM, Thompson LMA, et al. Supportive care needs of oral cancer survivors: Prevalence and correlates. Oral Oncol 2016; 53:85-90. doi: 10.1016/j.oraloncology.
Ellis MA, Sterba KR, Day TA, et al. Body image disturbance in surgically treated head and neck cancer patients: A patient-centered approach. Otolaryngol Head Neck Surg 2019; 161(2):278-87.
Chen C, Cao J, Wang L, et al. Body image and its associated factors among Chinese head and neck cancer patients undergoing surgical treatment: a cross-sectional survey. Support Care Cancer 2020; 28(3):1233-9.
Tadakamadla J, Kumar S, Lalloo R, et al. Qualitative analysis of the impact of oral potentially malignant disorders on daily life activities. PLoS One 2017; 12(4):e0175531.
Jehn P, Stier R, Tavassol F, et al. Physical and psychological impairments associated with mucositis after oral cancer treatment and their impact on quality of life. Oncol Res Treat 2019; 42(6):342-9.
Harding S, Moss TP. The impact of treatment for head and neck cancer on positive psychological change within a year of completing treatment. Int J Oral Maxillofac Surg 2018; 47(3):302-8.
Neilson K, Pollard A, Boonzaier A, et al. A longitudinal study of distress (depression and anxiety) up to 18 months after radiotherapy for head and neck cancer. Psychooncology 2013; 22(8):1843-8.
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.
Ghazali N, Cadwallader E, Lowe D, et al. Fear of recurrence among head and neck cancer survivors: longitudinal trends. Psychooncology 2013; 22(4):807-13.
Bhalla A, Anup N, pal Bhalla A, et al. Oral health related quality of life (OHRQOL) amongst head and neck cancer patients undergoing chemotherapy and radiotherapy at Sawi Mansingh Hospital Jaipur, India. Scholars Academic Journal of Biosciences 2015; 3(1A):3-12.
Deepan Kumar CV, Joseph J, Janakiram C, et al. Health-related quality of life and the perceived palliative care needs among oral cancer patients. J Indian Assoc Public Health Dent 2017; 15:327-33.
Baumann E, Scherer H, Link E, et al. Exploratory research focusing on oral cancer prevention: Challenges of dealing with informational and cognitive barriers. Qual Health Res 2019; 29(13):1930-41.
Losi E, Guberti M, Ghirotto L, et al. Undergoing head and neck cancer surgery: A grounded theory. Eur J Cancer Care (Engl) 2019; 28(4):e13062.
Manne S, Hudson SV, Baredes S, et al. Survivorship care experiences, information, and support needs of patients with oral and oropharyngeal cancer. Head Neck 2016; 38 (Suppl 1):E1935-46.
O'Brien KM, Timmons A, Butow P, et al. Associations between neighbourhood support and financial burden with unmet needs of head and neck cancer survivors. Oral Oncol 2017; 65:57-64.
Silveira AP, Gonçalves J, Sequeira T, et al. Geriatric oncology: comparing health related quality of life in head and neck cancer patients. Head Neck Oncol 2011; 3:3. doi: 10.1186/758-3284-3-3.
Ehrsson YT, Sundberg K, Laurell G, et al. Head and neck cancer patients' perceptions of quality of life and how it is affected by the disease and enteral tube feeding during treatment. Ups J Med Sci 2015; 120(4):280-9.
Fromm L, Gotfredsen K, Wessel I, et al. Oral health-related quality of life, oral aesthetics and oral function in head and neck cancer patients after oral rehabilitation. J Oral Rehabil 2019; 46(8):738-46.
Majid A, Sayeed BZ, Khan M, et al. Assessment and improvement of quality of life in patients undergoing treatment for head and neck cancer. Cureus 2017; 9(5):e1215.
Merrick S, Farrell D. Head and neck cancer patients' experiences of percutaneous endoscopic gastrostomy feeding: a Q-methodology study. Eur J Cancer Care (Engl) 2012; 21(4):493-504.
Low C, Fullarton M, Parkinson E, et al. Issues of intimacy and sexual dysfunction following major head and neck cancer treatment. Oral Oncol 2009; 45(10):898-903.
Giuliani M, Papadakos J, Broadhurst M, et al. The prevalence and determinants of return to work in head and neck cancer survivors. Support Care Cancer 2019; 27(2):539-46.
Deno M, Tashiro M, Miyashita M, et al. The mediating effects of social support and self-efficacy on the relationship between social distress and emotional distress in head and neck cancer outpatients with facial disfigurement. Psychooncology 2012; 21(2):144-52.
Wells M, Swartzman S, Lang H, et al. Predictors of quality of life in head and neck cancer survivors up to 5 years after end of treatment: a cross-sectional survey. Support Care Cancer 2016; 24(6):2463-72.
Gao Y, Yuan L, Pan B, et al. Resilience and associated factors among Chinese patients diagnosed with oral cancer. BMC Cancer 2019; 19(1):447. doi: 10.1186/s12885-019-5679-0.
Dzebo S, Mahmutovic J, Erkocevic H. Quality of life of patients with oral cavity cancer. Mater Sociomed 2017; 29(1):30-4.
Kjaer TK, Johansen C, Andersen E, et al. Influence of social factors on patient-reported late symptoms: Report from a controlled trial among long-term head and neck cancer survivors in Denmark. Head Neck 2016; 38(Suppl 1):E1713-21.
Schaller A, Dragioti E, Liedberg GM, et al. Quality of life during early radiotherapy in patients with head and neck cancer and pain. J Pain Res 2017; 10:1697-704.
Shavi GR, Thakur B, Bhambal A, et al. Oral health related quality of life in patients of head and neck cancer attending cancer hospital of Bhopal City, India. J Int Oral Health 2015; 7(8):21-7.
Cnossen IC, de Bree R, Rinkel RN, et al. Computerized monitoring of patient-reported speech and swallowing problems in head and neck cancer patients in clinical practice. Support Care Cancer 2012; 20(11):2925-31.
Goswami S, Gupta SS, Raut A. Understanding the psychosocial impact of oral cancer on the family caregivers and their coping up mechanism: A qualitative study in Rural Wardha, Central India. Indian J Palliat Care 2019; 25(3):421-7.
Naughton MJ, Weaver KE. Physical and mental health among cancer survivors: considerations for long-term care and quality of life. N C Med J 2014; 75(4):283-6.
Kim RH, Yang P, Sung EC. Managing intraoral lesions in oral cancer patients in a general dental practice: An overview. J Calif Dent Assoc 2016; 44(2):85-92.
Llewellyn CD, McGurk M, Weinman J. Are psycho-social and behavioural factors related to health related-quality of life in patients with head and neck cancer? A systematic review. Oral Oncol 2005; 41(5):440-54.
Cremonese G, Bryden G, Bottcher C. A multidisciplinary team approach to preservation of quality of life for patients following oral cancer surgery. ORL Head Neck Nurs 2000; 18(2):6-11.
Lydiatt WM, Moran J, Burke WJ. A review of depression in the head and neck cancer patient. Clin Adv Hematol Oncol 2009; 7(6):397-403.
Hassanein KA, Musgrove BT, Bradbury E. Functional status of patients with oral cancer and its relation to style of coping, social support and psychological status. Br J Oral Maxillofac Surg 2001; 39(5):340-5.
Chasen MR, Bhargava R. A descriptive review of the factors contributing to nutritional compromise in patients with head and neck cancer. Support Care Cancer 2009; 17(11):1345-51.
Duke RL, Campbell BH, Indresano AT, et al. Dental status and quality of life in long-term head and neck cancer survivors. Laryngoscope 2005; 115(4):678-83.
Verdonck-de Leeuw IM, van Bleek WJ, René Leemans C, et al. Employment and return to work in head and neck cancer survivors. Oral Oncol 2010; 46(1):56-60.
Rogers SN, Harvey-Woodworth CN, Hare J, et al. Patients' perception of the financial impact of head and neck cancer and the relationship to health related quality of life. Br J Oral Maxillofac Surg 2012; 50(5):410-6.
Hassanein KA, Musgrove BT, Bradbury E. Psychological outcome of patients following treatment of oral cancer and its relation with functional status and coping mechanisms. J Craniomaxillofac Surg 2005; 33(6):404-9.
Hortense FTP, Bergerot CD, Domenico EBL. Quality of life, anxiety and depression in head and neck cancer patients: a randomized clinical trial. Rev Esc Enferm USP 2020; 54:e03546. doi: 10.1590/S1980-220X2018040103546.
Moore KA, Ford PJ, Farah CS. Support needs and quality of life in oral cancer: a systematic review. Int J Dent Hyg 2014; 12(1):36-47.
Llewellyn CD, Weinman J, McGurk M. A cross-sectional comparison study of cognitive and emotional well-being in oral cancer patients. Oral Oncol 2008; 44(2):124-32.
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.