Ingrid Boelhouwer

An estimated 5 percent of the workers in the Netherlands have been diagnosed with cancer in the past. Not so long ago, a cancer diagnosis meant that people would stop working immediately. Today, nearly three-quarters of the workers who get cancer, sooner or later, return to work. In addition, cancer diagnoses are more common among the entire population, which is mainly explained by population growth and the growing number of elderly people, who are at higher risk of developing cancer than younger people. On average the working population is aging due to a higher retirement age, which leads to an increasing number of cancer diagnoses within the group of workers. In addition, the survival rates for a number of common types of cancer have increased. An example is breast cancer, for which the average 5-year survival rate is now 88%. These developments together cause that the group of workers, who had to deal with a cancer diagnosis in the past has grown and is expected to increase in the future.

Unfortunately, little research is known about work functioning of those, who have been confronted with a cancer diagnosis in the past. Current research mainly focuses on the reintegration process, normally during the first two years after diagnosis. This PhD research focuses specifically on the period from two years until ten years after cancer diagnosis and after the workers returned to work.

Getting cancer can be a life-changing experience, which may cause psychosocial effects in the long term, such as the fear of cancer recurrence. The treatments are intended to cure or suppress the disease, but may have unintended effects in the long term, that can affect functioning at work. The possible association between these so-called late effects of cancer treatments and the current and future functioning at work is the focus of this PhD research. Subsequently, opportunities in the work environment are investigated, which could support and enhance the functioning in work of people two to ten years past cancer diagnosis.

This PhD research focuses on three types of late effects; physical complaints, fatigue and cognitive complaints. When physical late effects are considered, a wide range of complaints is apparent, like radiation therapy can cause long-term problems due to damage to, for example, the connective tissue or the heart. Operations can involve scarring (adhesion formation) or, for example, lymphedema because the lymph nodes have been removed. Antihormone therapy can cause osteoporosis or pain in the joints. Chemotherapy and immunotherapy can result in problems of the heart functioning. Besides physical complaints fatigue is a common late effect of cancer treatments. This fatigue is described as unpredictable and not related to the activities that have been performed, in any case very different from ‘normal’ fatigue, which healthy people experience after exercising. Also cognitive problems are a possible late consequence of the cancer treatments. These problems are increasingly focus of research. Chemotherapy may affect brain functioning, resulting in complaints like loss of concentration or memory problems. However, treatments with antihormones may also potentially have an influence on cognitive functioning. Cognitive problems can be investigated with neuropsychological research or can be reported by those, who suffer from them, for example by questionnaire research. Fatigue and cognitive complaints can be related to each other, but also to other psychosocial factors. Fatigue can cause cognitive complaints, but the reverse can also occur. So when both fatigue and cognitive complaints occur, a possible mutual causal relationship must be investigated. This influences the targets for interventions to enhance functioning of the worker in concern, since the question is therefore whether attention should first be paid to cognitive complaints, fatigue or both.

As mentioned above, this PhD research investigates the association between physical complaints, fatigue and cognitive complaints on the one hand and work functioning on the other. With regard to work functioning work ability and burnout complaints are investigated. In addition, the question is what can help workers when late effects diminish work functioning. A number of resources in the work environment, that are derived from the Job-Demands Resources (JD-R) model are examined. Resources are factors, which are beneficial for functioning at work and concern – in addition to, for example, possible personal resources such as resilience – also factors, that can play a role in interactions and work processes in the workplace. This last group of resources is the focus of this PhD research. The choice was made for autonomy and support in the workplace (from colleagues and from supervisors or managers). The question is if these resources have a beneficial direct effect on work functioning and if these resources may have a buffering effect on the expected associations between chronic late effects and less favorable work functioning. Buffering would imply that these resources make the association between chronic late effects on the one hand and possibly reduced functioning in work on the other hand less strong, which is beneficial. The research obviously focuses on workers, who have been confronted with a cancer diagnosis in the past and are dealing with possible chronic late effects of cancer treatments. In addition, a sub-study was carried out among workers with mental and/or physical chronic conditions other than cancer.

Five questions have been investigated and answered in this PhD research:

Sub-question 1: What is the current state of knowledge about the association between possible late effects of cancer treatment (physical complaints, fatigue or cognitive complaints) and work ability in workers. more than two years after the cancer diagnosis, who returned to work, and about the possible buffering by job resources of this assumed association?

This question was answered by a systematic literature review. A number of studies showed that the work ability decreased in the first two years after diagnosis, but was followed by a recovery. Nevertheless, after two years, work ability was still lower than among healthy workers. No previous studies were found about the course of work ability past the first two years after diagnosis. However, studies were found that reported on various cross-sectional associations of late effects (physical complaints, fatigue or cognitive complaints) with work ability of workers, who were diagnosed with cancer more than two years ago. A lower working ability was observed with higher late effects. Social support by colleagues or by the manager and autonomy were cross-sectionally associated with a higher work ability. No studies were found about a possible buffering effect of these resources on the relationship between late effects and work ability. Research into longitudinal effects, or effects over time, were also not found in the studies included in this systematic literature review.

Sub-question 2: What is the relationship between mental and/or physical chronic conditions at work functioning and do resources buffer this supposed association?

This sub-study among employees in educational and (semi-)government organizations in the Netherlands showed that all three groups (physical chronic disorders, mental chronic disorders, and both physical and mental disorders) are associated with a lower work ability. In general, higher burnout complaints were all found to be associated with mental chronic disorders (whether or not combined with physical chronic conditions), and not with exclusively physical chronic conditions. Higher autonomy and a supportive leadership style were related to a higher work ability. This did not apply to social support from colleagues. The three job resources were all related to fewer burnout complaints. Autonomy buffered the association between chronic mental disorders and lower work ability, and the association between the group with both physical and mental chronic conditions and more burnout complaints. A more supportive leadership style was associated with a less favorable relationship with functioning at work among the group employees with mental chronic diseases (with or without physical chronic conditions). Furthermore, no buffering was found for social support by colleagues.

Sub-question 3: What is the association of late effects of treatment (physical complaints, fatigue and cognitive complaints) and of resources at work (autonomy, supportive leadership style and social support from colleagues) with the future work ability of employees, who were confronted with a breast cancer diagnosis two to ten years ago?

This sub-study showed that higher levels of fatigue and cognitive complaints predicted lower future work ability (9 months later), taking into account the level of the individual work ability score on the first questionnaire. In addition to fatigue and cognitive complaints, physical complaints had no significant effect on future work ability. However, physical complaints were also associated with a lower future work ability and should not be ignored. Higher levels of autonomy, a supportive leadership style and social support from colleagues did not predict higher future work ability. However, a higher level of these resources was associated with a higher current working ability, suggesting that the beneficial effect may only last for a short time. In participants with average or many physical complaints, there was no difference in future work ability between average and high autonomy. However, future work ability was remarkably lower when autonomy was low. No moderation by the other resources was found in this sub-study.

Sub-question 4: To what extent do the late effects of cancer treatments (physical complaints, fatigue and cognitive complaints) and job resources (autonomy and supportive leadership style) have an association with future burnout complaints in employees with a breast cancer diagnosis two to ten years ago?

In this sub-study, it was found that a higher level of fatigue and cognitive complaints predicted higher future burnout complaints (9 months later), taking into account the individual initial score of burnout complaints on the first questionnaire. In addition to fatigue and cognitive complaints, no significant causal effect of physical complaints on future burnout complaints was observed, because the influence of fatigue and cognitive complaints was stronger. Higher levels of autonomy or a supportive leadership style had no direct effect on future burnout complaints but an association with current burnout complaints, which in turn were associated with future burnout complaints. No buffering was observed with regard to supportive leadership, but more autonomy did buffer the negative association between cognitive complaints and future burnout complaints. The latter had not been studied before and is a remarkable finding.

Sub-question 5: What are the experiences and ideas of managers and professionals about the guidance of employees with late effects of cancer (treatment) and what is their idea about the effect of autonomy, social support by colleagues and an open organizational culture?

In the interviews, the late effects of cancer treatments were discussed. Both the previously described physical complaints, fatigue and cognitive problems were recognized and considered as late effects, that were experienced during functioning at work. Some professionals reported that the willingness to share such complaints in the context of work requires an open and safe psychological climate, which unfortunately is not present in every organization or workplace. When the manager or human resource management is aware of cognitive problems and fatigue, guidance is sometimes complicated, due to the invisibility and complexity of the complaints and because ways to deal with them are not always known on the work floor and within work activities and require special customization. Some tasks can no longer be performed in the case of cognitive complaints, because of the associated risks. In those cases, it is necessary to be familiar with these complaints and the possible consequences during work. Specialized professional support is possible, but does not reach everyone, who needs it. Autonomy in work was generally considered an important factor and the need for tailor-made interventions was expressed. There were warnings with regard to workers taking a step back in job level, because this may involve the risk of less autonomy in the new work situation, which was considered disadvantageous. Also, the fear of cancer return or a different view on life were discussed in various interviews as a form of possible late effects of getting cancer, as well as the problems that self-employed people face. Many self-employed people are insufficiently insured and therefore have no opportunities to find (affordable) support or guidance.

General conclusions and recommendations

First of all, it is important to note that the complaints reported by the workers are not caused with certainty (only) by the cancer treatments. However, because previous research has shown that these complaints can be characterized as late effects, this PhD study has used the self-reporting of physical complaints, fatigue and cognitive complaints.

It was noticed that all three complaints show mutual associations, especially for fatigue and cognitive complaints, this is known from other research. During the interviews in this PhD research, it was pointed out that fatigue can be the cause of cognitive complaints and that cognitive complaints can cause fatigue. Furthermore, previous studies have shown that fatigue is a common late effect of cancer treatment and is associated with lower work ability, and that this association may even be slightly stronger among workers, who have faced cancer in the past than among other populations of workers. In the sub-studies based on the data collection in this PhD project among workers two to ten years after cancer diagnosis, fatigue and cognitive complaints are not only associated with a lower current work ability and higher current burnout complaints, but were also predictive of a lower future work ability and higher future burnout complaints. The importance of these results is that fatigue and cognitive complaints can not only be a hindrance in work functioning at the moment, but it affects future functioning in work as well. This shows the importance to take such complaints seriously. In addition, when investigating burnout symptoms, severe fatigue due to cancer treatments can possibly lead to a burnout diagnosis, which can result in the treatment not being in line with the cause of the complaints.

The job resources autonomy and support in the workplace (by colleagues or by supervisors / managers) had no direct association with future work ability or burnout complaints among salaried workers, who were confronted with a breast cancer diagnosis in the past. Nevertheless, these resources appear to be associated with higher current work ability and lower current burnout complaints, suggesting a short-term effect on better work functioning, indicating that these resources need attention continuously. The searches of the literature showed that a number of studies had also found that autonomy and support by colleagues was associated with higher current work ability among workers after cancer diagnosis. However, for none of the job resources had been investigated whether there was buffering of the relationship between possible late effects and work ability or burnout complaints. In the sub-study among workers with chronic conditions, autonomy and a supportive leadership style appeared in a number of cases to have a buffering effect on the associations with work ability or burnout complaints. No buffering was found of social support by colleagues. In the sub-studies based on the data collection within this PhD project among workers two to ten years after a breast cancer diagnosis, a result regarding buffering can only be reported for autonomy. This concerns the buffering by autonomy of the relationship between cognitive complaints and future burnout complaints. Apparently, higher autonomy in case of higher cognitive complaints helps to reduce future burnout complaints. This is an important and previously unreported result, because it shows that the role of the worker and the opportunities that are offered in determining the content and approach to work has a more favorable effect on functioning at work the higher cognitive complaints are. A reverse effect (namely deterioration of the relationship) was found for autonomy regarding the relationship between physical complaints and work ability. Autonomy should not be too low in the situation of high levels of physical complaints, because then the work ability is much lower than at an average level of autonomy. However, in the situation of high levels of physical complaints a similar work ability is observed for an average level and for a high level of autonomy. Therefore the conclusion is that there is an optimum level of autonomy in the case of physical complaints. Moreover, this shows that – as professionals indicated during the interviews – customization is important. Finally, this PhD research shows that the most favourable level of autonomy must be properly determined; depending on the profile of different late effects and in this will have to be determined in dialogue with the worker. Further research may show profiles of different levels of late effects, providing guidelines with regard to the most optimal approach in the workplace. For example, adjustments in hours and tasks are adjustments often mentioned, however it is also important to focus on how work tasks or the job can provide as much work pleasure and positive energy as possible, with a view to functioning well at work, also within this population of workers.

Practical implications for supervisors, managers, professionals and workers with or past cancer.

Contact, openness and seeking solutions in dialogue turned out to be keywords in the interviews, but unfortunately this is not common in every work environment. Especially cognitive complaints and fatigue are complicated given their invisibility to the environment. In order to recognize that any late effects affect functioning at work, the complaints must therefore be shared, but workers sometimes find this difficult out of fear for discrimination or stigmatization. That fear is not necessarily unfounded, as also emerged from the interviews. Partly for this reason, it is important that all employees are aware that a occupational physician has to comply with doctor-patient confidentiality. There are also specialized occupational physicians in the field of oncology (so-called BACO’s) and many other professionals, who are specialized in the field of work and cancer. These professionals offer many opportunities for guidance and support. Within organizations, human resource management can play a crucial role as an advisor to supervisors and managers, directing the approach to work and cancer and making other professional guidance accessible to the employees. Moreover, informal care or support from the private environment can also be very important for the worker. For all professionals, and especially for those who have little experience with workers who have had cancer, it is important to be aware of the late effects of cancer and cancer treatments. It is crucial that all late physical effects relevant in the workplace, as well as cognitive complaints and fatigue, are taken seriously. The worker should be familiar with the possibility of late effects of the treatments so they can be recognized if they should occur, and the most appropriate approach should be chosen. Facing the situation before and after cancer and cancer treatments can be confronting. Unfortunately, professional help is not easy to find and accessible for all workers. Late effects of cancer treatments are common and should be more explicitly on the agenda of researchers, human resource management and line management, and all those who can help workers, who are struggling with this.