Cancer survivorship and employment: epidemiology

Transcription

1 IN-DEPTH REVIEW Occupational Medicine 2009;59: doi: /occmed/kqp Cancer survivorship and employment: epidemiology Z. Amir and J. Brocky... Abstract Survivorship following cancer diagnosis is increasing in prevalence; however, the research literature relating to the process of return to work is sparse. The limited literature suggests four groups of factors associated with return to work: (i) impact of cancer site, (ii) impact of treatment, (iii) occupational status and (iv) the roles of others. The extent to which these findings can be generalized to UK settings is limited as most research originates in countries with social welfare arrangements differing significantly from those in place in the UK. Therefore, there is a need for more evidence to inform better guidance for clinicians, survivors and work organizations about how to manage cancer in the workplace.... Introduction Return to work following cancer has been of research interest since at least 1973 when the President of the American Cancer Society described it as a joint responsibility of all society [1]. A series of American studies published between 1976 and 1980 [2 4] showed high rates of return to work after cancer but highlighted two main categories of difficulties experienced by cancer survivors (i) disease and treatment issues and (ii) workplace issues including health insurance, attitudes of co-workers and managers and job discrimination. With improvements in diagnosis, treatment and survival rates, the impact of cancer on paid work is of increasing importance. The following article provides an overview of the published literature examining the (i) rate of return to work for cancer survivors, (ii) models for understanding return to work after cancer survivorship and (iii) factors associated with return to work rates (Figure 1). In addition, gaps in the existing literature are identified and future research possibilities are considered. Literature relating to the extent of work limitations experienced by cancer survivors is addressed in the accompanying article by Munir et al. Rates of return to work A number of studies conducted in North America suggest that the impact of cancer on work status may be generally transient rather than permanent. Bradley and Bednarek [5] Macmillan Research Unit, School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK. Correspondence to: Z. Amir, Macmillan Research Unit, School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK. Tel: ; fax: ; ziv.amir@manchester.ac.uk found that 67% of the 141 cancer survivors in their sample employed at the time of diagnosis were still in full-time employment 5 7 years later. A study conducted by Bouknight et al. [6] also found high rates of return to work, with only 18% of the sample not working 12 months after the diagnosis. Short et al. [7] followed the employment journeys of 1433 cancer survivors. The rate of those in employment increased steadily from 43% between initial diagnosis and 5 months post-diagnosis to 73% to 6 11 months post-diagnosis, with 84% of the sample having returned to work months after diagnosis. Sanchez et al. [8] found that 89% of survivors of colorectal cancer returned to work, with 80% still in employment 5 years later.a study of breast cancer survivors in Ontario [9] found 21% not in employment 3 years after diagnosis, in comparison to 15% of a matched cancer-free sample. In The Netherlands, Spelten et al. [10] reported that 64% of their sample had returned to work 18 months after diagnosis, up from 25% at 6 months and Amir et al. [11] reported a rate of 82% among participants resident in the North-West of England. Even though the evidence is that most cancer survivors are eventually able to return to work, it should be noted that a significant minority do not. Reviews of the literature Spelten et al. [12] systematically reviewed 14 studies conducted between 1985 and 1999 using a work, disease/ treatment and person-related framework. Factors facilitating work return were a positive attitude from coworkers and discretion over number of hours and nature of work undertaken. Most work-related factors, particularly physically demanding manual labour, hindered return to work. In terms of disease/treatment factors, only Ó The Author Published by Oxford University Press on behalf of the Society of Occupational Medicine. All rights reserved. For Permissions, please journals.permissions@oxfordjournals.org

2 374 OCCUPATIONAL MEDICINE Characteristics of the individual (1) Cancer site, stage, prognosis & treatment Symptom status (2) Functional status (3) General health perceptions Work outcomes (5) time elapsed since treatment cessation was positively associated with return to work. Generally, no conclusive findings were identified across studies in terms of disease stage, cancer site and person-related factors. Methodological weaknesses included the use of small samples and nonstandardized study-specific research instruments and the use of cross-sectional design. To establish a more accurate measure of the prevalence of cancer among the working population, the authors called for cancer registries to record more information on patients working status. Another review [13] examined a total of 18 studies published between 1996 and 2003 using six methodological criteria: (i) use of population-based samples from cancer registries to avoid selection bias; (ii) prospective and longitudinal assessment commencing as near to diagnosis and initial treatment as possible to gauge short- and long-term impact; (iii) detailed assessment of work intensity, role and content at multiple time points; (iv) assessment of impact of cancer on individual and family s economic status; (v) identification of multi-dimensional moderators of return to work and function (e.g. cancer site/stage, treatment modality, co-morbidities, age, family structure, health insurance status) with a particular focus on those amenable to intervention and (vi) sample sizes of sufficient number to allow multivariate analysis, with sufficient numbers in subgroups for provision of prognostic information. No study met all the outlined criteria and only four studies satisfied even four. Of these [5, 10, 14, 15], three were from the USA and one was from The Netherlands. Each had relatively small sample sizes ranging from 235 to 296 survivors. Findings from these studies are difficult to summarize as different sets of measures were used. Generally, physical symptoms were important predictors of work return and function. Functional limitations and cancer site were also consistently Characteristics of the environment/social network (6) Figure 1. Relationship between cancer, quality of life and work outcomes. predictive of subsequent work outcomes. Again, the review authors were similarly critical of the methodological quality of the research and suggested a conceptual model to guide future research providing a comprehensive assessment of the influences on work after cancer. 1. Socio-demographic characteristics, personal goals and values, baseline physical and mental co-morbidities and perceived importance of work. 2. Examples include presence or absence of fatigue, pain and dyspnoea. 3. Includes presence or absence of various physical and mental health limitations. 4. Includes self-rating of overall health, among other selfperceptions. 5. Includes working, work intensity, changes to job schedule and work status. Work role and content including change in employer, work type, productivity, job satisfaction, value of work and ability to change job. 6. Includes social support, presence or absence of dependents and need to maintain health insurance. Source: Steiner et al. [13]. The authors [13] also called for the development and evaluation of practical work-related interventions to achieve optimal work outcomes for survivors. However, it was acknowledged that while return to work may be the most desirable outcome from a wider social and economic perspective, this will not necessarily be the optimal outcome for individuals. Cancer and paid work should thus be assessed in the context of individual priorities and values. Impact of cancer site Cancer refers to a heterogeneous group of diagnoses with a range of prognoses. While the evidence suggests

3 Z. AMIR AND J. BROCKY: CANCER SURVIVORSHIP AND EMPLOYMENT: EPIDEMIOLOGY 375 that many survivors will be able to return to work, this is likely to vary significantly by cancer site. Feldman [2 4] identified cancer site as an important variable in this context in the late 1970s. In more recent times, the impact of cancer site was examined in a population study of all working age cancer survivors in Finland known to be alive on 31st December 1997 [16]. In all, 50% of the samples were in employment, compared to 55% of a control group appropriately matched for age and gender. However, there was considerable variation between different cancer types. Survivors of lung cancer, multiple myeloma and cancer of the nervous system were much less likely to Table 1. Employment of cancer survivors with age- and gender-matched referents Number be in employment. More encouragingly, the most prevalent cancer sites breast, female and male genital organs and urinary had employment rates only slightly below those of the control group (Tables 1 and 2). Impact of treatment Cancer treatment varies according to the site and stage of the disease and may involve surgery, chemotherapy, radiotherapy and hormone treatment either singly or in combination. Treatment may have a significant impact on an individual s health and associated symptoms may % of cancer survivors employed % of referents employed Relative risk All cancer sites ( ) Head and neck ( ) Digestive organs ( ) Female genital organs ( ) Urinary and male genital organs ( ) Skin ( ) Sarcomas ( ) Lymphomas ( ) Lung ( ) Breast ( ) Nervous system ( ) Thyroid gland ( ) Multiple myeloma ( ) Source: Taskila-Abrandt et al. [16]. Table 2. Employment rate and relative risk of being employed by cancer type 2 3 years after diagnosis with their referents Number % of cancer survivors employed % of referents employed Relative risk (95% CI) Stomach ( ) Colon ( ) Rectum ( ) Cervix uteri ( ) Corpus uteri ( ) Ovary ( ) Prostate ( ) Testis ( ) Kidney ( ) Bladder ( ) Melanoma of the skin ( ) Non-melanoma of the skin ( ) Leukaemia ( ) Non-Hodgkin s lymphoma ( ) Hodgkin s disease ( ) Lung ( ) Breast ( ) Nervous system ( ) Thyroid gland ( ) Source: Taskila-Abrandt et al. [18].

4 376 OCCUPATIONAL MEDICINE be physical (including fatigue, nausea, sleep disturbance), psychological (including anxiety and depression) and cognitive. The treatment undergone by patients and associated symptoms are an important factor in determining when individuals feel able to return to work. One study of women with breast cancer [9] identified limitations in upper body strength and fatigue as key in determining survivors ability to return to work. In a prospective Dutch study [10], survivors were two and a half times more likely to stay off work for prolonged periods if they experienced high levels of fatigue. The relationships between absenteeism from work, treatment type and cancer stage were examined by Bradley et al. [17] in their study of survivors of breast and prostate cancers. More prolonged and invasive treatments (chemotherapy, radiotherapy, surgery) are significantly more likely when illness diagnosis occurs later in the illness trajectory and resulted in lengthier periods of absence from the workplace (an average of 68 days for breast cancer patients and 40 days for prostate cancer patients). Those receiving earlier diagnosis were less likely to undergo such lengthy treatment and reported less absenteeism. Advances in cancer treatment mean that survival rates are significantly better and continue to improve. Reducing side-effects of treatment, better screening programmes to facilitate earlier diagnosis and clear guidelines for the management of fatigue should improve the return to work ability of survivors. Occupational status Occupational status is another factor associated with return to work among cancer survivors. In a large population-based study examining the employment rates of cancer survivors 2 3 years after diagnosis in comparison with appropriately matched controls with no cancer history [18], survivors from physically demanding occupations were up to 20% less likely to be in employment. In contrast, those with more sedentary roles were only 7% less likely to be in work. Level of educational achievement was also noted as having a moderating effect on return to work rates. Survivors with only a primary education were 19% less likely to be in employment than matched referents, compared to 12% for those with professional or vocational qualifications. The moderating role for educational attainment and occupational status on return to work has been noted elsewhere. Short et al. [7] found that cancer survivors with postgraduate qualifications were less likely to stop working than other educational groups. Bouknight et al. [6] found that not only did breast cancer survivors without high school diplomas have significantly lower annual household incomes but were also far less likely to return to work than their college educated counterparts in higher earning white-collar occupations. Poorer outcomes in terms of employment prospects were also found among older, less educated, lower income survivors in prospective cohort study of Choi et al. [19] of 305 Korean men with stomach, liver or colorectal cancer. Over half the sample lost their jobs over the 24 month study period. Lower levels of educational achievement are often associated with physically demanding jobs paying poorer salaries. There exist particular difficulties in the return to work process for this group of cancer survivors which requires further exploration to identify possibilities for targeted interventions. Role of others in return to work process From employment discrimination and limited legal protection in the 1970s [2 4], a generation of progress [20] for cancer survivors in the developed world has resulted in a vastly improved position for people with cancer returning to the workplace. However, there remains room for improvement. In the USA [21], cancer survivors have been identified as more likely to file claims for job loss and differential treatment related to workplace policies than other groups with some impairment. Although cancer survivors accounted for only 2.9% of impairment claims, some 27% were determined to have merit compared to only 5% in the general disability population. A number of psychosocial factors are also associated with levels of work limitations experienced. Bouknight et al. [6] found that 87% of breast cancer survivors perceived their employer as accommodating of their illness and need for treatment. Just 7% reported discrimination due to their cancer diagnosis. Furthermore, all who returned to work did so in the same position held prior to diagnosis whereas perceived employer discrimination was associated with not returning to work. Little work has been carried out examining the role of professionals, including oncology specialists, primary care providers and occupational health professionals, in the return to work process for cancer survivors. The limited research that exists suggests considerable scope for improvement in this potentially important area. The evidence available suggests that survivors receive very little advice from medical practitioners about return to work [22]. A pilot intervention study in The Netherlands conducted by Nieuwenhuijsen et al. [23] aimed to enhance communication about treatment type and duration between physicians in the oncology team and occupational health professionals. Additionally, cancer survivors and occupational health professionals received a leaflet detailing a stepped rehabilitation plan based on principles of graded activity and goal setting. Results of the intervention were difficult to interpret as there was a high degree of satisfaction with the processes involved and adherence to rehabilitation recommendations among survivors but no clear statistical link to return to work. In the USA, the Institute of Medicine [24] has highlighted the need

5 Z. AMIR AND J. BROCKY: CANCER SURVIVORSHIP AND EMPLOYMENT: EPIDEMIOLOGY 377 for development of survivorship care plans including recommendations on maintaining health and well-being, information on legal protections regarding employment and the availability of psychosocial services in the community. This form of comprehensive approach to post-treatment care should ease the transition from cancer patient to cancer survivor and help address anxieties experienced through this process. Conclusion While the existing literature contains numerous findings and potentially useful insights, wide gaps in our knowledge necessitate further research. With the inevitable increase of working age cancer survivors, more accurate data on the prevalence of cancer among working populations internationally are needed by policy makers, service providers and researchers. The extent to which findings can be generalized to UK settings is limited as most current research originates in countries with social welfare arrangements differing significantly from those in place in the UK. The pivotal relationship between employment and health insurance in the USA is not shared by most other countries in the developed world and it seems reasonable to assume that different social welfare systems will impact on work decisions of survivors. There is clearly a need for better guidance for clinicians, survivors and work organizations about how to manage cancer in the workplace. Improving support for survivors at work may take many forms but is likely to require more information on the late effects of treatment, possible work limitations and suitable accommodations that could allow a survivor to be economically active if that is what they choose to do. Improving the evidence base for such guidance and evaluating the effectiveness of interventions are essential. 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