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SPEECH THERAPY AND REHABILITATION: Edited by H. Fiona Robinson and Jo Patterson

Returning to work after head and neck cancer

Miller, Abia,b

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Current Opinion in Otolaryngology & Head and Neck Surgery: June 2020 - Volume 28 - Issue 3 - p 155-160
doi: 10.1097/MOO.0000000000000628
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Abstract

INTRODUCTION

Disability, head and neck cancer and work

In the United Kingdom, there are currently 41 million working-age people and 31 million in employment [1]. 3.7 million people (31% of all working-age people) have a long-term health condition [1]. A cancer diagnosis is considered a disability [2] and workers can negotiate reasonable changes to the workplace [3]. Disabled people are 10 times more likely to leave the workplace after long-term sickness absence than nondisabled people [1]. 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 [4]. Supporting people with health conditions or disabilities to remain in the workplace helps the individual, employers, government and society [1]. Cancer survivors and their employers identify multiple barriers and facilitators to work participation [5] and employers also require support [6].

Head and neck cancer (HNC) is the sixth most common cancer worldwide and the most common cancer in Central Asia [7]. In the United Kingdom, 12238 cases of HNC are diagnosed per year, accounting for 3% of all new cancers detected [8]. 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 [9].

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 [10]. This rise has been attributed to human papilloma virus (HPV) related cancers, accounting for 70% of oro-pharyngeal cancer [11]. The incidence of HPV positive (HPV+) HNCs is increasing rapidly, with ‘epidemic’ proportions [12]. 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).

Table 1
Table 1:
Characteristics of HNC, previously published [7]

People are living longer following HNC treatment, a significant proportion are of working-age. However, living longer may not result in living well [13]. 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 [16].

’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 [17]. 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’ [17]. 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 [18]. Convenient and fast access to health services contribute to maintaining employment [18]. The last decade has seen a sharp rise in part-time, insecure work and zero-hours contracts in the United Kingdom [19]. Poor quality and stressful workplaces can harm health more than being unemployed [19].

A systematic review of employment following cancer [20], 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 [20]. 

Box 1
Box 1:
no caption available

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 [21], whereas a Danish population-based study [22] 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 [23]. HNC survivors have significant unmet needs including managing finances and support for RTW [24]. American [25] and Canadian [26] 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 [27]. The financial burden of HNC, and impact on ability to work, continue to challenge people with HNC in the United Kingdom [16].

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 [28]. 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 [28]. 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 [29]. Broader societal costs of oro-pharyngeal cancer in terms of lost productivity are estimated to be £531 million annually [30].

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% [37]. 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 [38], however survey response rates were low (31%). An Irish study [36] 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 [36].

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 [33]. 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 [34]. Conversely, there was no difference in RTW rates between white-collar workers and blue-collar workers in study of mixed HNC cancer sites [32], 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 [31], tumour stage [41] and surgery [32] 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 [35] 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’ [36].

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).

Table 2
Table 2:
Barriers and facilitators after treatment and at return to work [42▪▪]

Findings showed that experiences of HNC survivors were influenced by interactions with multiple players [42▪▪]. In the same sample [44], 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 [44].

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.

CONCLUSION

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.

FUTURE RESEARCH

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.

Acknowledgements

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:

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Keywords:

employment; head and neck cancer; oro-pharyngeal; return to work; survivor(ship)

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