Disability, head and neck cancer and work
In the United Kingdom, there are currently 41 million working-age people and 31 million in employment . 3.7 million people (31% of all working-age people) have a long-term health condition . A cancer diagnosis is considered a disability  and workers can negotiate reasonable changes to the workplace . Disabled people are 10 times more likely to leave the workplace after long-term sickness absence than nondisabled people . In the United Kingdom, productivity is lower in the north than the south. This gap is associated with worse health, and economic inactivity, associated with long-term health conditions . Supporting people with health conditions or disabilities to remain in the workplace helps the individual, employers, government and society . Cancer survivors and their employers identify multiple barriers and facilitators to work participation  and employers also require support .
Head and neck cancer (HNC) is the sixth most common cancer worldwide and the most common cancer in Central Asia . In the United Kingdom, 12238 cases of HNC are diagnosed per year, accounting for 3% of all new cancers detected . HNC incidence rates have increased by 32% since the early 1990s, with oro-pharyngeal cancers increasing by 20%, especially in the under 65 years of age group .
The traditional demographic for HNC is older males around or above retirement age, with alcohol and tobacco as risk factors. However, the last 30 years has seen a change in the HNC population. A surge in the rate of oral and oro-pharyngeal cancers has occurred in the United Kingdom, Denmark, Netherlands, Norway, Sweden, USA and Canada, despite reduced smoking rates . This rise has been attributed to human papilloma virus (HPV) related cancers, accounting for 70% of oro-pharyngeal cancer . The incidence of HPV positive (HPV+) HNCs is increasing rapidly, with ‘epidemic’ proportions . This has resulted in the distinct disease group of HPV-positive HNCs (HPV+), which have a different profile to HPV-negative HNCs (HPV−; see Table 1).
People are living longer following HNC treatment, a significant proportion are of working-age. However, living longer may not result in living well . Fewer HNC survivors return to work than other cancers [14,15]. Head and neck structures play a critical role in function, body image and socialization. Changes to speech, swallowing, appearance, neck, shoulder and arm movement can all occur following HNC and its treatment. These physical difficulties, crucial for job roles, can be compounded by psychological issues, such as anxiety or depression. Quality of life, day-to-day functioning, relationships, and therefore the ability to resume or remain in work, are negatively affected .
’Good work’ is a determinant of health and the health system's role is fundamental to this [17,18]. Good work refers to jobs that are stable and secure, with adequate pay, and opportunities for training and career progression. The workplace should be well designed with healthy physical conditions, and good working relationships should be supported. These elements, combined with debt and benefits advice, improve the physical and mental health of workers . Access to work-related support from the NHS is vital and ensures that work is a health outcome, based on the premise of ‘good work is good for health’ . Employers have a fundamental role to help employees stay healthy and well at work; and facilitate both access to work, and continuation of work, for people with disabilities . Convenient and fast access to health services contribute to maintaining employment . The last decade has seen a sharp rise in part-time, insecure work and zero-hours contracts in the United Kingdom . Poor quality and stressful workplaces can harm health more than being unemployed .
A systematic review of employment following cancer , argued that the concept of ‘return to work’ is simplistic and warrants a full exploration of the role work plays, and its inherent meaning to each individual. Work has multiple functions, beyond that of paid employment. Work, as well as representing healthiness, is a basis for self-esteem, identity, social relationships; and showcases individuals’ innate skills, talents and abilities. The importance of work to individuals depends on the relative values placed on these different elements .
Reasons of non-return to work in head and neck cancer survivors
HNC survivors reported that they discontinue their employment due to issues such as fatigue, speech and eating problems, pain and appearance changes , whereas a Danish population-based study  found that early retirement and unemployment following HNC treatment was more strongly associated with socio-economic factors and co-morbidity, than cancer-related factors.
Financial impact of head and neck cancer
Having cancer affected employment and income in two thirds of people studied in Australia . HNC survivors have significant unmet needs including managing finances and support for RTW . American  and Canadian  studies indicate that financial consequences of HNC are significant. Only 25% of HNC survivors in the United Kingdom reported that they received sufficient help with finances . The financial burden of HNC, and impact on ability to work, continue to challenge people with HNC in the United Kingdom .
Costs of non-return to work
Oral, oro-pharyngeal and larynx cancers were estimated to cost the NHS £309 million over a 5-year period from 2006 to 2011 . Thirty-seven percent of these costs are accounted for by oro-pharyngeal cancers, with nearly 75% of the total cost associated with the treatment of males . It is anticipated that this figure will increase in the future: men with oro-pharyngeal cancer are estimated to have treatment costs of over £18 billion in the United Kingdom for the period 2019–2039 based on an Irish study on productivity losses after HNC . Broader societal costs of oro-pharyngeal cancer in terms of lost productivity are estimated to be £531 million annually .
Current evidence on return to work after head and neck cancer
It is important to state here that the current evidence base on HNC and work is embryonic. It is essential to capture the perspectives of HNC survivors in order to inform the development of appropriate support and interventions. Currently, very few studies exist which focus on the experiences of people returning to work following HNC treatment. The literature search, therefore, required a broader scope to encompass studies which included HNC survivors worldwide, with a focus on work-related concepts.
Generalizing findings from international literature is challenging for several reasons. Differences exist between countries: health systems; social welfare policies and disability benefits, labour markets, employment rates and the economic context. Cultural differences may exist in attitudes to work or social structures. Studies vary in design and research techniques, occupational definitions used, or working patterns included. Some studies report on a heterogenous group of cancer survivors, including a subset of HNC survivors, where others focus on a sub-group of HNC sites, for example oral or laryngeal cancers.
The current review highlights the most important and relevant studies, fourteen of which have been published in the last decade and identified systematically. It focusses mainly on the small number of qualitative and mixed methods studies which explore the meaning of work following HNC, and the process of RTW following HNC. The quantitative studies are also included, but to a lesser degree, in order to help explain the complexity of issues surrounding RTW.
Rates of return to work
Many HNC survivors require a substantial time off work, and a significant number of people who have undergone HNC treatment do not return to work at all. Nine of the studies reported on the percentage of people RTW following HNC (RTW rates) but there is wide variation in these RTW rates, from 92% to 32% [31,32]. Four studies find RTW rates cluster between 48% and 59% [33–36] and in India it's 83% . Differences in sample groups, study design and methods mean that it is difficult to compare rates of RTW between the studies.
Factors related to RTW
Behavioural factors, illness and treatment related perceptions regarding RTW were investigated in two UK studies [38,39] in survivors of breast, urological, gynaecological cancers and HNC. Both studies showed that HNC survivors perceived greater physical effects from the cancer and its treatment and returned to work later than the other groups. Employers reported more negative beliefs about RTW which could affect the transition back into the workplace , however survey response rates were low (31%). An Irish study  highlighted that workforce participation needs to be looked at long-term up to 5 years posttreatment. Factors such as whether someone was self-employed, had private health insurance, and their HNC sub-site and treatment type, influenced workforce participation .
Job types, skills and socio-economic status
A large multicentre retrospective study in Germany, Austria and Switzerland examined symptoms related to return to work; and was the first to examine differences between professional groups . Following oral cancer treatment, employed survivors retrospectively perceived an improved quality of life, compared to the unemployed or retired, who reported increased anxiety. More white-collar workers resumed work than blue-collar workers overall; and white-collar workers resumed work at a faster rate than blue-collar workers. Blue-collar workers experienced more impairments and changed job more often after RTW (due to job physical demands). Blue-collar workers reported more feelings of fatalism about cancer progression, reduced confidence in ability and a sense of powerlessness. RTW was influenced by impairments, behavioural and psychological factors rather than disease and treatment related variables. Similar findings were reported in a Spanish study of people who had undergone laryngectomy, 80% of them with higher skilled jobs remained in their job, as opposed to 35% with lower qualifications . Conversely, there was no difference in RTW rates between white-collar workers and blue-collar workers in study of mixed HNC cancer sites , but the sample size was small (n = 145) with a low response rate (38%). Factors such as sociodemographic, disease and treatment variables and unmet survivorship needs were not seen to be predictive of employment status in a Canadian study [40▪] Rather, RTW was associated with previous full-time work and higher quality-of-life scores (including functional physical and psychosocial well being). Other studies found that comorbidity , tumour stage  and surgery  significantly predicted RTW. Conversely, these factors were not predictive of RTW in the Canadian study [40▪].
Quality of life
The majority of studies report that HNC survivors who reduce their working hours or do not RTW have a lower quality of life than those who do RTW. However, the direction of this relationship remains unclear [31–33,35,40▪]. A Swedish study  interviewed people with HNC about the meaning and process of RTW. However, as the interviews were not recorded or transcribed, the reliability of this data cannot be verified. In a study of long-term workforce participation patterns in HNC survivors, reducing or stopping work ‘is not a single, simple step from working to not working’ .
Return to work barriers and facilitators
Together, these studies are beginning to show that RTW is a complex issue, involving an interaction of multiple factors. One high-quality study explores the barriers and facilitators for people with HNC who RTW at three time points: diagnosis and treatment; during treatment; after treatment [42▪▪] an approach used in [20,43]. Each stage had different barriers, which responded to a range of facilitators (see Table 2).
Findings showed that experiences of HNC survivors were influenced by interactions with multiple players [42▪▪]. In the same sample , HNC survivors were asked to consider the advice they would give employers and newly diagnosed peers. HNC survivors suggested peers seek advice from their healthcare team, carry out self-care, proactively discuss their cancer with employers, plan for potential changes and access support. They advised employers to demonstrate compassion and honesty in all communication during the work disability period .
The data from earlier studies [38,39] is complemented by a Dutch study [45▪▪] of mixed cancer groups (39% HNC, 43% breast, 18% colorectal) which examined behavioural factors influencing both return to, and continuation, of work. The authors found that work had a positive meaning in peoples’ lives. Cancer survivors initially had negative expectations regarding RTW which changed to positive during the treatment process. Active coping, positive attitude, social support (family and friends) and self-efficacy helped. Some cancer survivors experienced pressure from Occupational Physicians to return to work. The authors concluded that these behavioural aspects may be important to address in the design of work-related cancer interventions; but the cause is not yet determined.
The literature is beginning to draw a picture, but evidence is preliminary and limited to observational or exploratory studies. It is difficult to draw conclusions across studies, or to the HNC population as a whole, because of the variety of focus, samples and study designs. RTW appears to positively impact on quality of life. A fuller understanding of the barriers to RTW, or strategies which help RTW and employment satisfaction is required [40▪]. The numbers of working-age survivors of HNC are increasing significantly. Research in this field is urgently required to:
- develop interventions to meet the needs of HNC survivors
- help survivors of HNC transition back into work.
Healthcare professionals are key to engage people with HNC in discussions about RTW, and to link them with relevant support services.
Health and work is an emerging research field [46,47]. Further research is required to understand the needs of HNC survivors when they are returning to work, and to establish what challenges them, or provides support to enable them to remain within the active workforce.
Dr Eleanor Wilson, University of Nottingham, for advice given whilst drafting this article.
Financial support and sponsorship
A.M. is funded by a National Institute of Health Research Predoctoral Clinical Academic Fellowship.
Conflicts of interest
There are no conflicts of interest.
REFERENCES AND RECOMMENDED READING
Papers of particular interest, published within the annual period of review, have been highlighted as:
1. Adelman L. Health and work policy research and analysis: our agenda. London, England:In: NIHR Working Age Consultation Event; 2019.
4. Bambra C, Munford L, Brown H, et al. (2018). Health for wealth: building a healthier northern powerhouse for UK productivity [Internet]. Newcastle-Upon-Tyne. https://www.thenhsa.co.uk/2018/11/major-new-report-connects-norths-poor-health-with-poor-productivity/
5. Greidanus MA, de Boer AGEM, de Rijk AE, et al. Perceived employer-related barriers and facilitators for work participation of cancer survivors: a systematic review of employers’ and survivors’ perspectives. Psychooncology 2018; 27:725–733.
6. Tiedtke CM, Dierckx de Casterlé B, Frings-Dresen MHW, et al. Employers’ experience of employees with cancer: trajectories of complex communication. J Cancer Surviv 2017; 11:562–577.
7. Economopoulou P, Psyrri A. Epidemiology risk factors and pathogenesis of squamous cell tumours. Head Neck Cancers Essentials Clin [Internet] 2017. 1–6. http://oncologypro.esmo.org/content/download/113133/1971849/file/2017-ESMO-Essentials-for-Clinicians-Head-Neck-Cancers-Chapter-1.pdf
9. National Institute for Health and Care Excellence. Improving outcomes in Head and Neck Cancers - the manual [Internet]. 2004. pp. 1--165. https://www.nice.org.uk/guidance/csg6/resources/improving-outcomes-in-head-and-neck-cancers-update.pdf-773377597
10. Union for International Cancer Control. Locally advanced squamous carcinoma of the head and neck: executive summary [Internet]. Review of Cancer Medicines on the WHO List of Essential Medicines. 2014. Available from: https://www.who.int/selection_medicines/committees/expert/20/applications/HeadNeck.pdf
11. Mehanna H, Beech T, Nicholson T, et al. Prevalence of human papilloma virus in oropharyngeal and nonoropharyngeal head and neck cancer
- systematic review and meta-analysis of trends by time and region. Head Neck [Internet] 2013; 35:747–755. https://onlinelibrary-wiley-com.ezproxy.nottingham.ac.uk/doi/epdf/10.1002/hed.22015
12. Mehanna H, Evans M, Beasley M, et al. Oropharyngeal cancer: United Kingdom National Multidisciplinary Guidelines. J Laryngol Otol 2016; 130 (S2):S90–S96.
14. Short PF, Vasey JJ, Tunceli K. Employment
pathways in a large cohort of adult cancer survivors. Cancer 2005; 103:1292–1301.
15. Ross L, Petersen MA, Johnsen AT, et al. Factors associated with Danish cancer patients’ return to work
. A report from the population-based study ‘The Cancer Patient's World.’. Cancer Epidemiol 2012; 36:222–229.
16. Swallows Head, Neck Cancer Support Group. Mouth Cancer Foundation, Bristol-Myers Squibb. Beyond clinical outcomes: UK patient experience in head and neck cancers [Internet] 2019; https://www.theswallows.org.uk/wp-content/uploads/2019/08/APPROVED-HN-Report-final-1
17. UK Department of Health and Social Care. Prevention is better than cure: our vision to help you live well for longer. Dep Heal Soc Care [Internet]. 2018;(November):41. https://www.gov.uk/government/publications/prevention-is-better-than-cure-our-vision-to-help-you-live-well for-longer
18. UK Department of Health and Social Care. The NHS Long Term Plan [Internet]. UK: UK Department of Health and Social Care. pp. 1--136. www.longtermplan.nhs.uk
19. Marmot M, Allen J, Boyce T, et al. (2020). Health Equity in England: The Marmot review 10 years on executive summary.
20. Wells M, Williams B, Firnigl D, et al. Supporting ‘work-related goals’ rather than ‘return to work
’ after cancer? A systematic review and meta-synthesis of 25 qualitative studies. Psychooncology 2013; 22:1208–19.
21. Buckwalter AE, Karnell LH, Smith RB, et al. Patient-reported factors associated with discontinuing employment
following head and neck cancer
treatment. Arch Otolaryngol - Head Neck Surg 2007; 133:464–470.
22. Kjær T, Boje CR, Olsen MH, et al. Affiliation to the work market after curative treatment of head-and-neck cancer: a population-based study from the DAHANCA database. Acta Oncol (Madr) 2013; 52:430–439.
23. Paul C, Boyes A, Hall A, et al. The impact of cancer diagnosis and treatment on employment
, income, treatment decisions and financial assistance and their relationship to socioeconomic and disease factors. Support Care Cancer 2016; 24:4739–4746.
24. Giuliani M, McQuestion M, Jones J, et al. Prevalence and nature of survivorship
needs in patients with head and neck cancer
. Head Neck 2016; 38:1097–103.
25. Massa ST, Osazuwa-Peters N, Adjei Boakye E, et al. Comparison of the financial burden of survivors of head and neck cancer
with other cancer survivors. JAMA Otolaryngol - Head Neck Surg 2019; 145:239–249.
26. Martino R, Ringash J, Durkin L, et al. Feasibility of assessing patient health benefits and incurred costs resulting from early dysphagia intervention during and immediately after chemoradiotherapy for head-and-neck cancer. Curr Oncol 2017; 24:e466–e476.
27. Rogers SN, Harvey-Woodworth CN, Lowe D. Patients’ perspective of financial benefits following head and neck cancer
in Merseyside and Cheshire. Br J Oral Maxillofac Surg 2012; 50:404–409.
28. Keeping ST, Tempest MJ, Stephens SJ, et al. The cost of oropharyngeal cancer in England: a retrospective hospital data analysis. Clin Otolaryngol 2018; 43:223–229.
29. Pearce AM, Hanly P, Timmons A, et al. Productivity losses associated with head and neck cancer
using the human capital and friction cost approaches. Appl Health Econ Health Policy 2015; 13:359–367.
30. Lechner M, Breeze CE, O’Mahony JF, Masterson L. Early detection of HPV-associated oropharyngeal cancer. Lancet 2019; 393:2123.
31. Baxi SS, Salz T, Xiao H, et al. Employment
and return to work
following chemoradiation in patient with HPV-related oropharyngeal cancer. Cancers Head Neck 2016; 1:1–8.
32. Koch R, Wittekindt C, Altendorf-Hofmann A, et al. Employment
pathways and work-related issues in head and neck cancer
survivors. Head Neck 2015; 37:585–593.
33. Handschel J, Gellrich NC, Bremerich A, KrüSkemper G. Return to work
and quality of life after therapy and rehabilitation in oral cancer. In Vivo 2013; 27:401–407.
34. Costa JM, López M, García J, et al. Impact of total laryngectomy on return to work
[Impacto de la laringectomía total en la situación laboral]. Acta Otorrinolaringol Esp 2018; 69:74–79.
35. Isaksson J, Wilms T, Laurell G, et al. Meaning of work and the process of returning after head and neck cancer
. Support Care Cancer 2016; 24:205–213.
36. Pearce A, Timmons A, O'Sullivan E, et al. Long-term workforce participation patterns following head and neck cancer
. J Cancer Surviv 2015; 9:30–39.
37. Agarwal J, Krishnatry R, Chaturvedi P, et al. Survey of return to work
of head and neck cancer
survivors: A report from a tertiary cancer center in India. Head Neck 2017; 39:893–899.
38. Grunfeld EA, Low E, Cooper AF. Cancer survivors’ and employers’ perceptions of working following cancer treatment. Occup Med (Lond) 2010; 60:611–617.
39. Cooper AF, Hankins M, Rixon L, et al. Distinct work-related, clinical and psychological factors predict return to work
following treatment in four different cancer types. Psychooncology 2013; 22:659–667.
40▪. 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; 27:539–546.
41. Verdonck-de Leeuw IM, Bleek WJvan, Leemans CR, Bree Rde. Employment
and return to work
in head and neck cancer
survivors. Oral Oncol 2010; 46:56–60.
42▪▪. Dewa CS, Trojanowski L, Tamminga SJ, et al. Work-related experiences of head and neck cancer
survivors: an exploratory and descriptive qualitative study. Disabil Rehabil 2018; 40:1252–1258.
43. Stergiou-Kita M, Pritlove C, van Eerd D, et al. The provision of workplace accommodations following cancer: survivor, provider, and employer perspectives. J Cancer Surviv 2016; 10:489–504.
44. Dewa CS, Trojanowski L, Tamminga SJ, et al. Advice about work-related issues to peers and employers from head and neck cancer
survivors. PLoS One 2016; 11:1–9.
45▪▪. Duijts SFA, van Egmond MP, Gits M, et al. Cancer survivors’ perspectives and experiences regarding behavioral determinants of return to work
and continuation of work. Disabil Rehabil 2017; 39:2164–2172.
46. Black C (2008). Working for a healthier tomorrow. Review of the health of Britain's working age population [Internet]. Department of Work and Pensions. London, England. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/209782/hwwb-working-for-a-healthier-tomorrow.pdf
47. Black C. Working age consultation event improving health and wellbeing in the workplace what should we achieve today? London, England:NIHR Working Age Consultation Event; 2019.