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Work functioning in cancer patients: looking beyond return to work

Dorland, H.F.

IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document version below.

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Publication date: 2018

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Dorland, H. F. (2018). Work functioning in cancer patients: looking beyond return to work. University of Groningen.

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General introduction

CHAP

TER

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With the growing group of cancer patients and the more and more chronic nature of several common cancers, the management of symptoms related to cancer and cancer treatment has become an important part of survivorship care1. Approximately 50% of the 3.45 million people diagnosed with cancer each year in Europe are part of the working population2,3 and an increasing number of cancer patients are likely to continue working or return to work after cancer diagnosis4. Twelve months after diagnosis, approximately 60% of the working patients had returned to work or stayed at work; 24 months after diagnosis, this percentage increased to 89%4.

Cancer patients may experience physical and psychosocial health problems such as fatigue, depressive symptoms and changes in cognitive function due to cancer diagnosis and treatment, which can persist for years after treatment5-9. These health problems have serious consequences for working cancer patients10. For example, (breast) cancer patients reported cognitive problems that negatively affected their work performance11 and described fatigue as disruptive for work outcomes even years after treatment12.

To date, little attention has been paid to the problems that the expanding group of cancer patients experience in meeting the job demands, as most studies focus on return to work, work status or work disability10. Insight into cancer patients' functioning at work and the factors that play a role herein is important to promote sustainable return to work. The absence of data on health-related work functioning and the need for measures to ensure sustainable return to work has prompted the establishment of a longitudinal cohort study on the work life after cancer (WOrk LIfe after CAncer; WOLICA). Investigating how cancer patients function at work after return to work is important for (occupational) physicians, employers and cancer patients. With this knowledge, cancer patients in need of additional guidance and support when back at work can be identified. The overall aim of this thesis is therefore to expand our knowledge of health-related work functioning among cancer patients during the first 18 months after return to work, with regard to health, psychosocial and work-related factors.

Cancer and work

In the Netherlands, more than 100.000 individuals are diagnosed with cancer each year and this number is still increasing13. In 2016, approximately 40% of the newly diagnosed cancer patients were of working age13. Because of earlier detection and continuing developments in treatment, individuals are more likely to survive a cancer diagnosis and an increasing part of the cancer patients is able to return to work, or to (partly) stay at work during treatment14-16. Cancer patients resume work for several reasons. For most cancer patients, work is a financial necessity15. Another reason for work resumption is to re-establish identity and the former structure of everyday life17,18. An interview study on the meaning of work and working life after cancer showed that work contributes to social relations with others and helps to give meaning to life17.

In 2010, Feuerstein et al. developed the Cancer & Work model (Figure 1)19. They based their model on the cancer survivorship and work disability literature as well as on clinical experience. The Cancer & Work model considers cancer patients’ individual characteristics, health, functional status in relation to demands, work environment, policy, procedures, and financial factors. It provides a framework to conceptualize problems related to work. Most elements of the model were empirically supported by observed associations. In this thesis, the Cancer & Work model informed us to design the focus group study and the questionnaire for the subsequent longitudinal cohort study WOLICA.

For the purpose of this thesis, we have added variables to the model. Feuerstein et al. stated that the work outcome of interest should be determined as a function of the specific research question19. As we are focusing on the difficulties that cancer patients experience in conducting their work (when back) after cancer diagnosis, work functioning was our main outcome of interest. Moreover, it is important to keep in mind that the model was not designed to be exhaustive19. For example, other symptoms of cancer and its treatment may be important to consider, such as depressive symptoms. As previous literature showed that depressive symptoms affect cancer patients at work5,6,10, we have added depressive symptoms to the model.

(4)

General introduction |

Chap

ter 1

With the growing group of cancer patients and the more and more chronic nature of several common cancers, the management of symptoms related to cancer and cancer treatment has become an important part of survivorship care1. Approximately 50% of the 3.45 million people diagnosed with cancer each year in Europe are part of the working population2,3 and an increasing number of cancer patients are likely to continue working or return to work after cancer diagnosis4. Twelve months after diagnosis, approximately 60% of the working patients had returned to work or stayed at work; 24 months after diagnosis, this percentage increased to 89%4.

Cancer patients may experience physical and psychosocial health problems such as fatigue, depressive symptoms and changes in cognitive function due to cancer diagnosis and treatment, which can persist for years after treatment5-9. These health problems have serious consequences for working cancer patients10. For example, (breast) cancer patients reported cognitive problems that negatively affected their work performance11 and described fatigue as disruptive for work outcomes even years after treatment12.

To date, little attention has been paid to the problems that the expanding group of cancer patients experience in meeting the job demands, as most studies focus on return to work, work status or work disability10. Insight into cancer patients' functioning at work and the factors that play a role herein is important to promote sustainable return to work. The absence of data on health-related work functioning and the need for measures to ensure sustainable return to work has prompted the establishment of a longitudinal cohort study on the work life after cancer (WOrk LIfe after CAncer; WOLICA). Investigating how cancer patients function at work after return to work is important for (occupational) physicians, employers and cancer patients. With this knowledge, cancer patients in need of additional guidance and support when back at work can be identified. The overall aim of this thesis is therefore to expand our knowledge of health-related work functioning among cancer patients during the first 18 months after return to work, with regard to health, psychosocial and work-related factors.

Cancer and work

In the Netherlands, more than 100.000 individuals are diagnosed with cancer each year and this number is still increasing13. In 2016, approximately 40% of the newly diagnosed cancer patients were of working age13. Because of earlier detection and continuing developments in treatment, individuals are more likely to survive a cancer diagnosis and an increasing part of the cancer patients is able to return to work, or to (partly) stay at work during treatment14-16. Cancer patients resume work for several reasons. For most cancer patients, work is a financial necessity15. Another reason for work resumption is to re-establish identity and the former structure of everyday life17,18. An interview study on the meaning of work and working life after cancer showed that work contributes to social relations with others and helps to give meaning to life17.

In 2010, Feuerstein et al. developed the Cancer & Work model (Figure 1)19. They based their model on the cancer survivorship and work disability literature as well as on clinical experience. The Cancer & Work model considers cancer patients’ individual characteristics, health, functional status in relation to demands, work environment, policy, procedures, and financial factors. It provides a framework to conceptualize problems related to work. Most elements of the model were empirically supported by observed associations. In this thesis, the Cancer & Work model informed us to design the focus group study and the questionnaire for the subsequent longitudinal cohort study WOLICA.

For the purpose of this thesis, we have added variables to the model. Feuerstein et al. stated that the work outcome of interest should be determined as a function of the specific research question19. As we are focusing on the difficulties that cancer patients experience in conducting their work (when back) after cancer diagnosis, work functioning was our main outcome of interest. Moreover, it is important to keep in mind that the model was not designed to be exhaustive19. For example, other symptoms of cancer and its treatment may be important to consider, such as depressive symptoms. As previous literature showed that depressive symptoms affect cancer patients at work5,6,10, we have added depressive symptoms to the model.

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Figure 1. Extended Cancer & Work model (based on Feuerstein, 201019)

The Dutch social security system

The findings in this thesis are based on data of working cancer patients in the Netherlands. To interpret the results, it is necessary to understand the specific context, i.e., the Dutch social security system. In the Netherlands, cancer patients report sick to their employer, who sends a sick-report to the occupational health service (OHS) to start medical guidance. An occupational physician (OP) consults with sick-listed cancer patients every 4 to 6 weeks and advises the patient and employer about work accommodations and other activities to facilitate return to work. One of the most important work accommodations is the reduction of working hours and tasks. In successive consultations, the OP advises to increase working hours and expand tasks resulting in a gradual return to work. For OPs, the Netherlands Society of Occupational Medicine (NVAB) has developed a practice guideline to advise cancer patients

and their employers about return to work20.

In the Netherlands, the employer financially compensates sickness absence for a maximum period of two years. Employers usually pay 100% of the employee’s income in the first year of sickness absence and 70% of the income in the second year. Most sick-listed cancer patients return to work to their own workplace. If this is not possible (e.g., due to the job characteristics), the employer is responsible for searching a job with characteristics that better fit the employee’s capacities, either within the company or in other companies. Cancer patients who have not fully returned to work (i.e., at equal income as before sickness absence) after two years of sickness absence can apply for a (partial) disability pension at the National Social Security Institute (UWV). When applying for disability pension, the UWV reviews if return to work activities of the employee and employer were sufficient.

Looking beyond return to work: work functioning in cancer patients

To date, most cancer and work research has focused on return to work, work status or work

disability10 and little attention has been paid to how cancer patients function at work after

return to work. As long-term physical or psychosocial problems may negatively influence

cancer patients’ functioning at work10, it is important to move beyond the simple dichotomy

of return to work yes/no as outcome and to use new work outcome measures reflecting functioning at work. During the conduct of our study, this was also stressed by Duijts et al. who stated that validated measures of work-related aspects should be used for a better understanding and assessment of work outcomes in cancer survivorship, measuring actual

work activities21. To assess how employees perform their work tasks given their physical

health or emotional problems, the concept of ‘health-related work functioning’ was

developed in the late 90s, and recently updated to address the changes in work22-25.

Health-related work functioning reflects the interplay between work and health and can be seen as a

continuum22,23,26. On the one side of the continuum, a worker is able to meet all work demands

without difficulties given his/her health status (experiencing difficulties 0% of the time) when performing work. On the other side of the continuum, a worker is no longer able to meet the

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General introducti on |

Chap

ter 1

Figure 1. Extended Cancer & Work model (based on Feuerstein, 201019)

The Dutch social security system

The findings in this thesis are based on data of working cancer patients in the Netherlands. To interpret the results, it is necessary to understand the specific context, i.e., the Dutch social security system. In the Netherlands, cancer patients report sick to their employer, who sends a sick-report to the occupational health service (OHS) to start medical guidance. An occupational physician (OP) consults with sick-listed cancer patients every 4 to 6 weeks and advises the patient and employer about work accommodations and other activities to facilitate return to work. One of the most important work accommodations is the reduction of working hours and tasks. In successive consultations, the OP advises to increase working hours and expand tasks resulting in a gradual return to work. For OPs, the Netherlands Society of Occupational Medicine (NVAB) has developed a practice guideline to advise cancer patients

and their employers about return to work20.

In the Netherlands, the employer financially compensates sickness absence for a maximum period of two years. Employers usually pay 100% of the employee’s income in the first year of sickness absence and 70% of the income in the second year. Most sick-listed cancer patients return to work to their own workplace. If this is not possible (e.g., due to the job characteristics), the employer is responsible for searching a job with characteristics that better fit the employee’s capacities, either within the company or in other companies. Cancer patients who have not fully returned to work (i.e., at equal income as before sickness absence) after two years of sickness absence can apply for a (partial) disability pension at the National Social Security Institute (UWV). When applying for disability pension, the UWV reviews if return to work activities of the employee and employer were sufficient.

Looking beyond return to work: work functioning in cancer patients

To date, most cancer and work research has focused on return to work, work status or work

disability10 and little attention has been paid to how cancer patients function at work after

return to work. As long-term physical or psychosocial problems may negatively influence

cancer patients’ functioning at work10, it is important to move beyond the simple dichotomy

of return to work yes/no as outcome and to use new work outcome measures reflecting functioning at work. During the conduct of our study, this was also stressed by Duijts et al. who stated that validated measures of work-related aspects should be used for a better understanding and assessment of work outcomes in cancer survivorship, measuring actual

work activities21. To assess how employees perform their work tasks given their physical

health or emotional problems, the concept of ‘health-related work functioning’ was

developed in the late 90s, and recently updated to address the changes in work22-25.

Health-related work functioning reflects the interplay between work and health and can be seen as a

continuum22,23,26. On the one side of the continuum, a worker is able to meet all work demands

without difficulties given his/her health status (experiencing difficulties 0% of the time) when performing work. On the other side of the continuum, a worker is no longer able to meet the

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Earlier, cross-sectional studies in the United States have investigated cancer patient’s work functioning27-29. Brain cancer patients were less able to meet the work demands than a control group without a life threatening illness or chronic disease due to depressive symptoms, fatigue, cognitive limitations, insufficient sleep, and negative problem solving orientation27. Breast cancer patients with fatigue or hot flashes reported work productivity below the healthy worker norm28 and were less productive than their peers who never had cancer29. The cross-sectional design of these studies does not allow looking into the course of work functioning after return to work. Moreover, little is known about the influence of health and psychosocial factors such as cancer diagnosis, cancer treatment, fatigue, depressive symptoms, cognitive symptoms and work-related factors on work functioning over time.

With a better understanding of the influence of health, psychosocial and work-related factors on cancer patients’ work functioning, (occupational) health professionals and employers can be better equipped to provide the appropriate guidance and support at the workplace. More in-depth knowledge about the relationship between health, psychosocial and work-related factors with work functioning is important to develop supportive interventions for cancer patients at work and towards the prevention of work disability29. The current longitudinal WOLICA study with repeated measures is an important step forwards because the study provides insight in the experienced difficulties and consequences for cancer patients’ work functioning after return to work.

Work-specific cognitive symptoms

The effects of cancer-related cognitive symptoms are identified by cancer patients as a primary problem affecting work ability and job performance21. Cognitive symptoms, such as diminished memory, executive function, attention and information processing speed30, are one of the most bothersome symptom clusters experienced by cancer patients31. Even when cognitive symptoms are experienced as mild, they can have profound consequences upon quality of life, especially when they are persistent and left untreated32. As cognitive symptoms can be experienced for more than 20 years following treatment8, they are likely to affect cancer patient’s functioning at work5,6.

Cognitive symptoms experienced at work (i.e., work-specific cognitive symptoms) demand a better understanding of their impact on work outcomes, as well as develop effective interventions to reduce their impact21. Furthermore, more detailed information about modifiable factors associated with the course of work-specific cognitive symptoms may offer directions for treatment of work-specific cognitive symptoms. Physicians, labour experts and employers can use this information to guide and support cancer patients back at work.

Overall aim and specific research objectives

The overall aim of this thesis is to expand our knowledge of health-related work functioning among cancer patients who returned to work after cancer diagnosis and treatment with curative intent. This overall aim has been translated into the following research objectives:

1. To identify barriers and facilitators of work functioning among cancer patients after return to work (Chapter 2).

2. To cross-culturally translate and adapt the Cognitive Symptom Checklist-Work21 into Dutch and to assess the reliability and validity of the CSC-W Dutch version (Chapter 3). 3. To identify work functioning trajectories in the year following return to work in cancer patients and to examine baseline socio-demographic, health-related and work-related variables associated with work functioning trajectories (Chapter 4).

4. To investigate the course of work functioning, health status and work-related factors among cancer patients during 18 months after return to work and to examine the associations between these variables and work functioning over time (Chapter 5). 5. To describe the course of work-specific cognitive symptoms in the first 18 months post

return to work and to examine the associations with work characteristics, fatigue and depressive symptoms over time (Chapter 6).

Qualitative and quantitative methods were used to address the overall aim and specific research objects of this thesis.

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General introduction |

Chap

ter 1

Earlier, cross-sectional studies in the United States have investigated cancer patient’s work functioning27-29. Brain cancer patients were less able to meet the work demands than a control group without a life threatening illness or chronic disease due to depressive symptoms, fatigue, cognitive limitations, insufficient sleep, and negative problem solving orientation27. Breast cancer patients with fatigue or hot flashes reported work productivity below the healthy worker norm28 and were less productive than their peers who never had cancer29. The cross-sectional design of these studies does not allow looking into the course of work functioning after return to work. Moreover, little is known about the influence of health and psychosocial factors such as cancer diagnosis, cancer treatment, fatigue, depressive symptoms, cognitive symptoms and work-related factors on work functioning over time.

With a better understanding of the influence of health, psychosocial and work-related factors on cancer patients’ work functioning, (occupational) health professionals and employers can be better equipped to provide the appropriate guidance and support at the workplace. More in-depth knowledge about the relationship between health, psychosocial and work-related factors with work functioning is important to develop supportive interventions for cancer patients at work and towards the prevention of work disability29. The current longitudinal WOLICA study with repeated measures is an important step forwards because the study provides insight in the experienced difficulties and consequences for cancer patients’ work functioning after return to work.

Work-specific cognitive symptoms

The effects of cancer-related cognitive symptoms are identified by cancer patients as a primary problem affecting work ability and job performance21. Cognitive symptoms, such as diminished memory, executive function, attention and information processing speed30, are one of the most bothersome symptom clusters experienced by cancer patients31. Even when cognitive symptoms are experienced as mild, they can have profound consequences upon quality of life, especially when they are persistent and left untreated32. As cognitive symptoms can be experienced for more than 20 years following treatment8, they are likely to affect cancer patient’s functioning at work5,6.

Cognitive symptoms experienced at work (i.e., work-specific cognitive symptoms) demand a better understanding of their impact on work outcomes, as well as develop effective interventions to reduce their impact21. Furthermore, more detailed information about modifiable factors associated with the course of work-specific cognitive symptoms may offer directions for treatment of work-specific cognitive symptoms. Physicians, labour experts and employers can use this information to guide and support cancer patients back at work.

Overall aim and specific research objectives

The overall aim of this thesis is to expand our knowledge of health-related work functioning among cancer patients who returned to work after cancer diagnosis and treatment with curative intent. This overall aim has been translated into the following research objectives:

1. To identify barriers and facilitators of work functioning among cancer patients after return to work (Chapter 2).

2. To cross-culturally translate and adapt the Cognitive Symptom Checklist-Work21 into Dutch and to assess the reliability and validity of the CSC-W Dutch version (Chapter 3). 3. To identify work functioning trajectories in the year following return to work in cancer patients and to examine baseline socio-demographic, health-related and work-related variables associated with work functioning trajectories (Chapter 4).

4. To investigate the course of work functioning, health status and work-related factors among cancer patients during 18 months after return to work and to examine the associations between these variables and work functioning over time (Chapter 5). 5. To describe the course of work-specific cognitive symptoms in the first 18 months post

return to work and to examine the associations with work characteristics, fatigue and depressive symptoms over time (Chapter 6).

Qualitative and quantitative methods were used to address the overall aim and specific research objects of this thesis.

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Outline of this thesis

This first chapter is a general introduction providing detailed information about the background of the study and the major concepts - health-related work functioning and work-specific cognitive symptoms - examined in this thesis. Chapter 2 presents the focus group study, conducted to gain more insight into barriers and facilitators of work functioning among cancer patients after return to work. Chapter 3 describes the cross-cultural translation and adaptation of an existing American questionnaire to measure work-specific cognitive symptoms into Dutch and the validation of this new Dutch questionnaire in the Dutch work context. In chapter 4, trajectories of work functioning in the first year after return to work are examined. The course of health- and work-related factors and their association with work functioning is investigated in chapter 5. In chapter 6, the course of work-specific cognitive symptoms in the first 18 months after return to work is identified and associations of work characteristics, fatigue and depressive symptoms with work-specific cognitive symptoms over time are examined. Chapter 7 is a general discussion of the main findings of this thesis and their implications as well as the methodological considerations, and provides directions for research and practice.

Focus group study

To identify barriers and facilitators of cancer patients’ work functioning, a focus group study was conducted with cancer patients who had returned to work in the three years prior to the focus group meeting and with professionals from (occupational) health care. Four focus groups were conducted: three with cancer patients (n=6, n=8, and n=8) and one with (occupational) health care professionals (n=7; two labour experts, two insurance physicians, one nurse practitioner, one OP, and one occupational social worker). Findings from this qualitative study were combined with evidence from the literature to inform the development of the questionnaires for the longitudinal cohort study.

The WOrk LIfe after CAncer (WOLICA) cohort study

A longitudinal cohort study with repeated measurements was conducted to expand our knowledge of work functioning among cancer patients who had returned to work after cancer diagnosis, the ‘WOrk LIfe after CAncer’ (WOLICA) cohort study. Cancer patients were eligible for inclusion when they 1) were between 18 and 65 years old, and 2) had resumed work for at least 12 hours/week in the past 3 months, during or following cancer treatment. Exclusion criteria were 1) recurrent cancer, 2) treated with palliative intent, 3) no paid employment for at least 1 year prior to cancer diagnosis, and 4) not able to complete a questionnaire in Dutch. Cancer patients were recruited for the WOLICA study by OPs working at three national OHSs in the Netherlands. These three OHSs provide occupational health care services for approximately 3 million employees, i.e., one-third of the Dutch workforce. When patients were interested to participate in the WOLICA study, OPs forwarded the patient’s name and address to the research team. Cancer patients were then informed about the study by phone by the research team. Cancer patients who met the inclusion criteria received additional study information, an informed consent form and the baseline questionnaire. Patients who did not return the baseline questionnaire and the informed consent received a reminder after 3-4 weeks. Cancer patients received no incentive for participation. The WOLICA study was reviewed and approved by the Medical Ethical Committee of the University Medical Center Groningen (M12.125242).

The WOLICA study was designed as longitudinal cohort study with seven measurement points during 18 months follow-up. As shown in Figure 2, cancer patients received questionnaires every 3 months. A comprehensive questionnaire was developed, based on the Cancer & Work model (Figure 1)19 and the findings of the focus group study. Major concepts, i.e., work functioning, health and psychosocial factors and work-related factors, were assessed at baseline, 6, 12, and 18 months after return to work. To get a better understanding of the course of work functioning over time, work functioning was measured at three intermediate measurement points (i.e., at 3, 9 and 15 months after return to work) with a short questionnaire.

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General introduction |

Chap

ter 1

Outline of this thesis

This first chapter is a general introduction providing detailed information about the background of the study and the major concepts - health-related work functioning and work-specific cognitive symptoms - examined in this thesis. Chapter 2 presents the focus group study, conducted to gain more insight into barriers and facilitators of work functioning among cancer patients after return to work. Chapter 3 describes the cross-cultural translation and adaptation of an existing American questionnaire to measure work-specific cognitive symptoms into Dutch and the validation of this new Dutch questionnaire in the Dutch work context. In chapter 4, trajectories of work functioning in the first year after return to work are examined. The course of health- and work-related factors and their association with work functioning is investigated in chapter 5. In chapter 6, the course of work-specific cognitive symptoms in the first 18 months after return to work is identified and associations of work characteristics, fatigue and depressive symptoms with work-specific cognitive symptoms over time are examined. Chapter 7 is a general discussion of the main findings of this thesis and their implications as well as the methodological considerations, and provides directions for research and practice.

Focus group study

To identify barriers and facilitators of cancer patients’ work functioning, a focus group study was conducted with cancer patients who had returned to work in the three years prior to the focus group meeting and with professionals from (occupational) health care. Four focus groups were conducted: three with cancer patients (n=6, n=8, and n=8) and one with (occupational) health care professionals (n=7; two labour experts, two insurance physicians, one nurse practitioner, one OP, and one occupational social worker). Findings from this qualitative study were combined with evidence from the literature to inform the development of the questionnaires for the longitudinal cohort study.

The WOrk LIfe after CAncer (WOLICA) cohort study

A longitudinal cohort study with repeated measurements was conducted to expand our knowledge of work functioning among cancer patients who had returned to work after cancer diagnosis, the ‘WOrk LIfe after CAncer’ (WOLICA) cohort study. Cancer patients were eligible for inclusion when they 1) were between 18 and 65 years old, and 2) had resumed work for at least 12 hours/week in the past 3 months, during or following cancer treatment. Exclusion criteria were 1) recurrent cancer, 2) treated with palliative intent, 3) no paid employment for at least 1 year prior to cancer diagnosis, and 4) not able to complete a questionnaire in Dutch. Cancer patients were recruited for the WOLICA study by OPs working at three national OHSs in the Netherlands. These three OHSs provide occupational health care services for approximately 3 million employees, i.e., one-third of the Dutch workforce. When patients were interested to participate in the WOLICA study, OPs forwarded the patient’s name and address to the research team. Cancer patients were then informed about the study by phone by the research team. Cancer patients who met the inclusion criteria received additional study information, an informed consent form and the baseline questionnaire. Patients who did not return the baseline questionnaire and the informed consent received a reminder after 3-4 weeks. Cancer patients received no incentive for participation. The WOLICA study was reviewed and approved by the Medical Ethical Committee of the University Medical Center Groningen (M12.125242).

The WOLICA study was designed as longitudinal cohort study with seven measurement points during 18 months follow-up. As shown in Figure 2, cancer patients received questionnaires every 3 months. A comprehensive questionnaire was developed, based on the Cancer & Work model (Figure 1)19 and the findings of the focus group study. Major concepts, i.e., work functioning, health and psychosocial factors and work-related factors, were assessed at baseline, 6, 12, and 18 months after return to work. To get a better understanding of the course of work functioning over time, work functioning was measured at three intermediate measurement points (i.e., at 3, 9 and 15 months after return to work) with a short questionnaire.

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Figure 2. Study design with retention rate (n, %)

Cancer patients completed the questionnaires at home, on paper or online, based on their own preference. The final WOLICA cohort consisted of n=384 cancer patients. Many cancer patients completed the baseline and follow-up questionnaires, resulting in a retention rate of 80% at the seventh measurement point. An overview of the measured concepts, the used instruments, the measurement points and chapters is presented in Table 1.

Table 1. Overview of the measured concepts, instruments, measurement points and chapters

aWRFQ 2.0 = Work Role Functioning Questionnaire 2.0, bSF-36 = Single short Form-36 item, c

EORTC-QLQ = European Organization for Research and Treatment of Cancer Quality of Life Questionnaire,

dCIS-8 = Checklist Individual Strength, ePHQ-9 = Patient Health Questionnaire-9, fCSC-W DV = Cognitive

Symptom Checklist-Work Dutch Version, gISCO-08 = International Standard Classification of

Occupations, hCOPSOQ = Copenhagen Psychosocial Questionnaire.

Concept Measurement

instrument Measurement points (months) Chapter

Base-line 3 6 9 12 15 18

Work functioning WRFQ 2.0a 3, 4, 5, 6

Clinical factors

Cancer site Self-formulated 4, 6

Treatment type Self-formulated 4, 6

Treatment completion Self-formulated 4, 6

Time between diagnosis

and return to work Self-formulated 4, 6

Health and psychosocial factors

General health SF-36b 3, 4, 5

Quality of life EORTC-QLQ-30c 4

Fatigue CIS-8d 3, 4, 5, 6 Depressive symptoms PHQ-9e 3, 4, 5, 6 Work-specific cognitive symptoms CSC-W DV f 3, 4, 5, 6 Work-related factors

Job title Self-formulated /

ISCO-08g 4

Job type Self-formulated 4, 6

Working hours Self-formulated 4, 5, 6

Breadwinner status Self-formulated 4

Social support (supervisor,

colleagues) COPSOQ

h 4, 5

Sense of community COPSOQh 4

Quantitative demands COPSOQh 5

Work pace COPSOQh 5

Influence at work COPSOQh 5

Meaning of work COPSOQh 5

Work accommodations Self-formulated 4

Meaning of work changed Open question 4

Table 1. Overview of the measured concepts, instruments, measurement points and chapters

aWRFQ 2.0 = Work Role Functioning Questionnaire 2.0, bSF-36 = Single short Form-36 item, c

EORTC-QLQ = European Organization for Research and Treatment of Cancer Quality of Life Questionnaire,

dCIS-8 = Checklist Individual Strength, ePHQ-9 = Patient Health Questionnaire-9, fCSC-W DV = Cognitive

Symptom Checklist-Work Dutch Version, gISCO-08 = International Standard Classification of

Occupations, hCOPSOQ = Copenhagen Psychosocial Questionnaire.

Concept Measurement

instrument Measurement points (months) Chapter

Base-line 3 6 9 12 15 18

Work functioning WRFQ 2.0a 3, 4, 5, 6

Clinical factors

Cancer site Self-formulated 4, 6

Treatment type Self-formulated 4, 6

Treatment completion Self-formulated 4, 6

Time between diagnosis

and return to work Self-formulated 4, 6

Health and psychosocial factors

General health SF-36b 3, 4, 5

Quality of life EORTC-QLQ-30c 4

Fatigue CIS-8d 3, 4, 5, 6 Depressive symptoms PHQ-9e 3, 4, 5, 6 Work-specific cognitive symptoms CSC-W DV f 3, 4, 5, 6 Work-related factors

Job title Self-formulated /

ISCO-08g 4

Job type Self-formulated 4, 6

Working hours Self-formulated 4, 5, 6

Breadwinner status Self-formulated 4

Social support (supervisor,

colleagues) COPSOQ

h 4, 5

Sense of community COPSOQh 4

Quantitative demands COPSOQh 5

Work pace COPSOQh 5

Influence at work COPSOQh 5

Meaning of work COPSOQh 5

Work accommodations Self-formulated 4

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General introducti on |

Chap

ter 1

Figure 2. Study design with retention rate (n, %)

Cancer patients completed the questionnaires at home, on paper or online, based on their own preference. The final WOLICA cohort consisted of n=384 cancer patients. Many cancer patients completed the baseline and follow-up questionnaires, resulting in a retention rate of 80% at the seventh measurement point. An overview of the measured concepts, the used instruments, the measurement points and chapters is presented in Table 1.

Table 1. Overview of the measured concepts, instruments, measurement points and chapters

aWRFQ 2.0 = Work Role Functioning Questionnaire 2.0, bSF-36 = Single short Form-36 item, c

EORTC-QLQ = European Organization for Research and Treatment of Cancer Quality of Life Questionnaire,

dCIS-8 = Checklist Individual Strength, ePHQ-9 = Patient Health Questionnaire-9, fCSC-W DV = Cognitive

Symptom Checklist-Work Dutch Version, gISCO-08 = International Standard Classification of

Occupations, hCOPSOQ = Copenhagen Psychosocial Questionnaire.

Concept Measurement

instrument Measurement points (months) Chapter

Base-line 3 6 9 12 15 18

Work functioning WRFQ 2.0a 3, 4, 5, 6

Clinical factors

Cancer site Self-formulated 4, 6

Treatment type Self-formulated 4, 6

Treatment completion Self-formulated 4, 6

Time between diagnosis

and return to work Self-formulated 4, 6

Health and psychosocial factors

General health SF-36b 3, 4, 5

Quality of life EORTC-QLQ-30c 4

Fatigue CIS-8d 3, 4, 5, 6 Depressive symptoms PHQ-9e 3, 4, 5, 6 Work-specific cognitive symptoms CSC-W DV f 3, 4, 5, 6 Work-related factors

Job title Self-formulated /

ISCO-08g 4

Job type Self-formulated 4, 6

Working hours Self-formulated 4, 5, 6

Breadwinner status Self-formulated 4

Social support (supervisor,

colleagues) COPSOQ

h 4, 5

Sense of community COPSOQh 4

Quantitative demands COPSOQh 5

Work pace COPSOQh 5

Influence at work COPSOQh 5

Meaning of work COPSOQh 5

Work accommodations Self-formulated 4

Meaning of work changed Open question 4

Table 1. Overview of the measured concepts, instruments, measurement points and chapters

aWRFQ 2.0 = Work Role Functioning Questionnaire 2.0, bSF-36 = Single short Form-36 item, c

EORTC-QLQ = European Organization for Research and Treatment of Cancer Quality of Life Questionnaire,

dCIS-8 = Checklist Individual Strength, ePHQ-9 = Patient Health Questionnaire-9, fCSC-W DV = Cognitive

Symptom Checklist-Work Dutch Version, gISCO-08 = International Standard Classification of

Occupations, hCOPSOQ = Copenhagen Psychosocial Questionnaire.

Concept Measurement

instrument Measurement points (months) Chapter

Base-line 3 6 9 12 15 18

Work functioning WRFQ 2.0a 3, 4, 5, 6

Clinical factors

Cancer site Self-formulated 4, 6

Treatment type Self-formulated 4, 6

Treatment completion Self-formulated 4, 6

Time between diagnosis

and return to work Self-formulated 4, 6

Health and psychosocial factors

General health SF-36b 3, 4, 5

Quality of life EORTC-QLQ-30c 4

Fatigue CIS-8d 3, 4, 5, 6 Depressive symptoms PHQ-9e 3, 4, 5, 6 Work-specific cognitive symptoms CSC-W DV f 3, 4, 5, 6 Work-related factors

Job title Self-formulated /

ISCO-08g 4

Job type Self-formulated 4, 6

Working hours Self-formulated 4, 5, 6

Breadwinner status Self-formulated 4

Social support (supervisor,

colleagues) COPSOQ

h 4, 5

Sense of community COPSOQh 4

Quantitative demands COPSOQh 5

Work pace COPSOQh 5

Influence at work COPSOQh 5

Meaning of work COPSOQh 5

Work accommodations Self-formulated 4

Meaning of work changed Open question 4

Table 1. Overview of the measured concepts, instruments, measurement points and chapters

aWRFQ 2.0 = Work Role Functioning Questionnaire 2.0, bSF-36 = Single short Form-36 item, c

EORTC-QLQ = European Organization for Research and Treatment of Cancer Quality of Life Questionnaire,

dCIS-8 = Checklist Individual Strength, ePHQ-9 = Patient Health Questionnaire-9, fCSC-W DV = Cognitive

Symptom Checklist-Work Dutch Version, gISCO-08 = International Standard Classification of

Occupations, hCOPSOQ = Copenhagen Psychosocial Questionnaire.

Concept Measurement

instrument Measurement points (months) Chapter

Base-line 3 6 9 12 15 18

Work functioning WRFQ 2.0a 3, 4, 5, 6

Clinical factors

Cancer site Self-formulated 4, 6

Treatment type Self-formulated 4, 6

Treatment completion Self-formulated 4, 6

Time between diagnosis

and return to work Self-formulated 4, 6

Health and psychosocial factors

General health SF-36b 3, 4, 5

Quality of life EORTC-QLQ-30c 4

Fatigue CIS-8d 3, 4, 5, 6 Depressive symptoms PHQ-9e 3, 4, 5, 6 Work-specific cognitive symptoms CSC-W DV f 3, 4, 5, 6 Work-related factors

Job title Self-formulated /

ISCO-08g 4

Job type Self-formulated 4, 6

Working hours Self-formulated 4, 5, 6

Breadwinner status Self-formulated 4

Social support (supervisor,

colleagues) COPSOQ

h 4, 5

Sense of community COPSOQh 4

Quantitative demands COPSOQh 5

Work pace COPSOQh 5

Influence at work COPSOQh 5

Meaning of work COPSOQh 5

Work accommodations Self-formulated 4

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References

1. Wefel JS, Kesler SR, Noll KR, et al. Clinical characteristics, pathophysiology, and management of noncentral nervous system cancer-related cognitive impairment in adults. CA Cancer J Clin 2015;65:123-138.

2. Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, et al. Cancer incidence and mortality patterns in europe: Estimates for 40 countries in 2012. Eur J Cancer 2013;49:1374-1403.

3. Boer A. The european cancer and work network: CANWON. J Occup Rehabil 2014;24:393-398. 4. Mehnert A. Employment and work-related issues in cancer survivors. Crit Rev Oncol

2011;77:109-130.

5. Deimling GT, Bowman KF, Sterns S, et al. Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psychooncology 2006;15:306-320. 6. Gandubert C, Carrière I, Escot C, et al. Onset and relapse of psychiatric disorders following

early breast cancer: A case-control study. Psychooncology 2009;18:1029-1037.

7. Wagner LI, Cella D. Fatigue and cancer: Causes, prevalence and treatment approaches. Br J Cancer 2004;91:822-828.

8. Koppelmans V, Breteler MMB, Boogerd W, et al. Neuropsychological performance in survivors of breast cancer more than 20 years after adjuvant chemotherapy. J Clin Oncol 2012;30:1080-1086.

9. Wefel JS, Lenzi R, Theriault RL, et al. The cognitive sequelae of standard-dose adjuvant chemotherapy in women with breast carcinoma: Results of a prospective, randomized, longitudinal trial. Cancer 2004;100:2292-2299.

10. Duijts SFA, van Egmond MP, Spelten E, et al. Physical and psychosocial problems in cancer survivors beyond return to work: A systematic review. Psychooncology 2014;23:481-492. 11. Munir F, Kalawsky K, Lawrence C, et al. Cognitive intervention for breast cancer patients

undergoing adjuvant chemotherapy: A needs analysis. Cancer Nurs 2011;34:385-392. 12. Kennedy F, Haslam C, Munir F, et al. Returning to work following cancer: A qualitative

exploratory study into the experience of returning to work following cancer. European Journal of Cancer Care 2007;16:17-25.

13. Nederlandse Kankerregistratie. http://www.cijfersoverkanker.nl/, accessed at 16-02-2018. 14. Amir Z, Neary D, Luker K. Cancer survivors' views of work 3 years post diagnosis: A UK

perspective. Eur J Oncol Nurs 2008;12:190-197.

15. Hoffman B. Cancer survivors at work: A generation of progress. CA 2005;55:271-280.

16. Mehnert A. Employment and work-related issues in cancer survivors. Crit Rev Oncol 2011;77:109-130.

17. Rasmussen DME, Beth. The meaning of work and working life after cancer: An interview study. Psychooncology 2008;17:1232-1238.

18. Peteet JR. Cancer and the meaning of work. Gen Hosp Psychiatry 2000;22:200-205.

19. Feuerstein M, Todd BL, Moskowitz MC, et al. Work in cancer survivors: A model for practice and research. J Cancer Surviv 2010;4:415-437.

20. Netherlands Society of Occupational Medicine (NVAB). Guideline cancer and work (Richtlijn kanker en werk; voor het handelen van de bedrijfsarts bij het behoud van en terugkeer naar werk). 2017, Utrecht.

21. Duijts SFA, van der Beek AJ, Boelhouwer IG, et al. Cancer-related cognitive impairment and patients' ability to work: A current perspective. Curr Opin Support Palliat Care 2017;11:19-23. 22. Amick BC, Lerner D, Rogers WH, et al. A review of health-related work outcome measures and

their uses, and recommended measures. Spine 2000;25:3152.

23. Amick BC, Gimeno D. Measuring work outcomes with a focus on health-related work productivity loss. In: Wittink H, Carr D, eds. Pain management: Evidence, outcomes, and quality of life: A sourcebook. Amsterdam: Elsevier; 2008:329-343.

24. Abma FI, Amick BC, van der Klink JJL, et al. Prognostic factors for successful work functioning in the general working population. J Occup Rehabil 2013;23:162-169.

25. Abma FI, Bültmann U, Amick BC, et al. The work role functioning questionnaire v2.0 showed consistent factor structure across six working samples. J Occup Rehabil 2017. doi: 10.1007/s10926-017-9722-1.

26. Abma FI, van der Klink JJL, Bültmann U. The work role functioning questionnaire 2.0 (dutch version): Examination of its reliability, validity and responsiveness in the general working population. J Occup Rehabil 2013;23:135-147.

27. Feuerstein M, Hansen JA, Calvio LC, et al. Work productivity in brain tumor survivors. Journal of Occupational and Environmental Medicine 2007;49:803-811.

28. Lavigne JE, Griggs JJ, Tu XM, et al. Hot flashes, fatigue, treatment exposures and work productivity in breast cancer survivors. J Cancer Surviv 2008;2:296-302.

29. Hansen JA, Feuerstein M, Calvio LC, et al. Breast cancer survivors at work. J Occup Environ Med 2008;50:777-784.

30. Schagen SB, Wefel JS. Chemotherapy-related changes in cognitive functioning. EJC Suppl 2013;11:225-232.

31. Vannorsdall TD. Cognitive changes related to cancer therapy. Med Clin North Am 2017;101:1115-1134.

(14)

General introduction |

Chap

ter 1

References

1. Wefel JS, Kesler SR, Noll KR, et al. Clinical characteristics, pathophysiology, and management of noncentral nervous system cancer-related cognitive impairment in adults. CA Cancer J Clin 2015;65:123-138.

2. Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, et al. Cancer incidence and mortality patterns in europe: Estimates for 40 countries in 2012. Eur J Cancer 2013;49:1374-1403.

3. Boer A. The european cancer and work network: CANWON. J Occup Rehabil 2014;24:393-398. 4. Mehnert A. Employment and work-related issues in cancer survivors. Crit Rev Oncol

2011;77:109-130.

5. Deimling GT, Bowman KF, Sterns S, et al. Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psychooncology 2006;15:306-320. 6. Gandubert C, Carrière I, Escot C, et al. Onset and relapse of psychiatric disorders following

early breast cancer: A case-control study. Psychooncology 2009;18:1029-1037.

7. Wagner LI, Cella D. Fatigue and cancer: Causes, prevalence and treatment approaches. Br J Cancer 2004;91:822-828.

8. Koppelmans V, Breteler MMB, Boogerd W, et al. Neuropsychological performance in survivors of breast cancer more than 20 years after adjuvant chemotherapy. J Clin Oncol 2012;30:1080-1086.

9. Wefel JS, Lenzi R, Theriault RL, et al. The cognitive sequelae of standard-dose adjuvant chemotherapy in women with breast carcinoma: Results of a prospective, randomized, longitudinal trial. Cancer 2004;100:2292-2299.

10. Duijts SFA, van Egmond MP, Spelten E, et al. Physical and psychosocial problems in cancer survivors beyond return to work: A systematic review. Psychooncology 2014;23:481-492. 11. Munir F, Kalawsky K, Lawrence C, et al. Cognitive intervention for breast cancer patients

undergoing adjuvant chemotherapy: A needs analysis. Cancer Nurs 2011;34:385-392. 12. Kennedy F, Haslam C, Munir F, et al. Returning to work following cancer: A qualitative

exploratory study into the experience of returning to work following cancer. European Journal of Cancer Care 2007;16:17-25.

13. Nederlandse Kankerregistratie. http://www.cijfersoverkanker.nl/, accessed at 16-02-2018. 14. Amir Z, Neary D, Luker K. Cancer survivors' views of work 3 years post diagnosis: A UK

perspective. Eur J Oncol Nurs 2008;12:190-197.

15. Hoffman B. Cancer survivors at work: A generation of progress. CA 2005;55:271-280.

16. Mehnert A. Employment and work-related issues in cancer survivors. Crit Rev Oncol 2011;77:109-130.

17. Rasmussen DME, Beth. The meaning of work and working life after cancer: An interview study. Psychooncology 2008;17:1232-1238.

18. Peteet JR. Cancer and the meaning of work. Gen Hosp Psychiatry 2000;22:200-205.

19. Feuerstein M, Todd BL, Moskowitz MC, et al. Work in cancer survivors: A model for practice and research. J Cancer Surviv 2010;4:415-437.

20. Netherlands Society of Occupational Medicine (NVAB). Guideline cancer and work (Richtlijn kanker en werk; voor het handelen van de bedrijfsarts bij het behoud van en terugkeer naar werk). 2017, Utrecht.

21. Duijts SFA, van der Beek AJ, Boelhouwer IG, et al. Cancer-related cognitive impairment and patients' ability to work: A current perspective. Curr Opin Support Palliat Care 2017;11:19-23. 22. Amick BC, Lerner D, Rogers WH, et al. A review of health-related work outcome measures and

their uses, and recommended measures. Spine 2000;25:3152.

23. Amick BC, Gimeno D. Measuring work outcomes with a focus on health-related work productivity loss. In: Wittink H, Carr D, eds. Pain management: Evidence, outcomes, and quality of life: A sourcebook. Amsterdam: Elsevier; 2008:329-343.

24. Abma FI, Amick BC, van der Klink JJL, et al. Prognostic factors for successful work functioning in the general working population. J Occup Rehabil 2013;23:162-169.

25. Abma FI, Bültmann U, Amick BC, et al. The work role functioning questionnaire v2.0 showed consistent factor structure across six working samples. J Occup Rehabil 2017. doi: 10.1007/s10926-017-9722-1.

26. Abma FI, van der Klink JJL, Bültmann U. The work role functioning questionnaire 2.0 (dutch version): Examination of its reliability, validity and responsiveness in the general working population. J Occup Rehabil 2013;23:135-147.

27. Feuerstein M, Hansen JA, Calvio LC, et al. Work productivity in brain tumor survivors. Journal of Occupational and Environmental Medicine 2007;49:803-811.

28. Lavigne JE, Griggs JJ, Tu XM, et al. Hot flashes, fatigue, treatment exposures and work productivity in breast cancer survivors. J Cancer Surviv 2008;2:296-302.

29. Hansen JA, Feuerstein M, Calvio LC, et al. Breast cancer survivors at work. J Occup Environ Med 2008;50:777-784.

30. Schagen SB, Wefel JS. Chemotherapy-related changes in cognitive functioning. EJC Suppl 2013;11:225-232.

31. Vannorsdall TD. Cognitive changes related to cancer therapy. Med Clin North Am 2017;101:1115-1134.

(15)

32. Schagen SB, Klein M, Reijneveld JC, et al. Monitoring and optimising cognitive function in cancer patients: Present knowledge and future directions. EJC Suppl 2014;12:29-40.

(16)

32. Schagen SB, Klein M, Reijneveld JC, et al. Monitoring and optimising cognitive function in cancer patients: Present knowledge and future directions. EJC Suppl 2014;12:29-40.

(17)

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