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Protocol - Burden of Cancer on Employment

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Description

This self-administered subset of the questionnaire collects employment data to understand the lasting effects of cancer and cancer treatments on the lives of those who have been diagnosed with cancer.

Specific Instructions

For specific instructions, please refer to the MEPS website: https://meps.ahrq.gov/mepsweb/index.jsp

Protocol

Section 1. Changes to Your Work Schedule

1. At any time from when you were first diagnosed with cancer until now, were you working for pay at a job or business?

[ ] Yes

[ ] No →GO TO Question 38

These next questions ask about different ways cancer, its treatment, or the lasting effects of that treatment may have affected your work – that is, your hours, duties, or employment status.

As you answer these questions, please think about the entire time from when you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

2. At any time since your first cancer diagnosis, did you take extended paid time off from work, unpaid time off, or make a change in your hours, duties or employment status?

[ ] Yes→ GO TO Question 5

[ ] No

3. At any time since your first cancer diagnosis, did you ask for extended paid time off from work, unpaid time off, or a change in your hours, duties or employment status?

[ ] Yes

[ ] No→ GO TO Question 27

4. Did you ask for these work changes…

[ ] Because of your cancer, its treatment or its lasting effect →GO TO Question 27

[ ] Some other reason? →GO TO Question 27

5. Did you make these work changes…

[ ] Because of your cancer, its treatment or its lasting effects?

[ ] Some other reason? →GO TO Question 27

6. Did you ever take extended time off from work (vacation, sick time and/or disability leave)? By extended time off, we mean more than an occasional day off here and there.

[ ] Yes

[ ] No →GO TO Question 10

7. When did you take extended paid time off from work?

Mark x all that apply.

[ ] At the time of diagnosis

[ ] During treatment

[ ] Less than on year after treatment was finished

[ ] One year or more after treatment was finished

8. What do you estimate was the total amount of extended paid time off from work that you took?

[ ] Less than 2 months

[ ] 2 months to less than 6 months

[ ] 6 months to less than 1 year

[ ] 1 year to 3 years

[ ] More than 3 years

9. Is your extended paid time off from work ongoing?

[ ] Yes

[ ] No

10. Did you ever take unpaid time off from work?

[ ] Yes

[ ] No →GO TO Question 14

11. When did you take unpaid time off from work?

Mark x all that apply.

[ ] At the time of diagnosis

[ ] During treatment

[ ] Less than one year after treatment was finished

[ ] One year or more after treatment was finished

12. What do you estimate was the total amount of unpaid time off from work that you took?

[ ] Less than 2 months

[ ] 2 months to less than 6 months

[ ] 6 months to less than 1 year

[ ] 1 year to 3 years

[ ] More than 3 years

13. Is your unpaid time off ongoing?

[ ] Yes

[ ] No

14. Did you ever change from working part-time to working full-time?

[ ] Yes

[ ] No→ GO TO Question 18

15. When did you change from working part-time to working full-time?

Mark x all that apply.

[ ] At the time of diagnosis

[ ] During treatment

[ ] Less than one year after treatment was finished

[ ] One year or more after treatment was finished

16. What do you estimate was the total amount of time you worked full-time?

[ ] Less than 2 months

[ ] 2 months to less than 6 months

[ ] 6 months to less than 1 year

[ ] 1 year to 3 years

[ ] More than 3 years

17. Is this change ongoing?

[ ] Yes

[ ] No

18. Did you ever change from working full-time to working part-time?

[ ] Yes

[ ] No →GO TO Question 22

19. When did you change from working full-time to working part-time?

Mark X all that apply.

[ ] At the time of diagnosis

[ ] During treatment

[ ] Less than one year after treatment was finished

[ ] One year or more after treatment was finished

20. What do you estimate was the total amount of time you worked part-time?

[ ] Less than 2 months

[ ] 2 months to less than 6 months

[ ] 6 months to less than 1 year

[ ] 1 year to 3 years

[ ] More than 3 years

21. Is this change ongoing?

[ ] Yes

[ ] No

22. Did you ever change from a set work schedule, where you start and end at the same time every day, to a flexible work schedule, where your start and end times vary from day-to-day?

[ ] Yes

[ ] No →GO TO Question 24

23. When did you change to a flexible work schedule?

Mark x all that apply.

[ ] At the time of diagnosis

[ ] During treatment

[ ] Less than one year after treatment was finished

[ ] One year or more after treatment was finished

24. Did you ever change to a less demanding job?

[ ] Yes

[ ] No →GO TO Question 27

25. When did you change to a less demanding job?

Mark x all that apply.

[ ] At the time of diagnosis

[ ] During treatment

[ ] Less than one year after treatment was finished

[ ] One year or more after treatment was finished

26. Is the change ongoing?

[ ] Yes

[ ] No

27. Did you make any other type of work arrangements because of your cancer, its treatment, or the lasting effects of that treatment?

[ ] Yes

[ ] No →GO TO Question 28

If Yes, please describe:

   
   
   
   
   
   

28. Because of your cancer, its treatment, or the lasting effects of that treatment, did you ever decide not to pursue an advancement or promotion?

[ ] Yes

[ ] No

29. Because of your cancer, its treatment, or the lasting effects of that treatment, did you retire earlier than you had planned?

[ ] Yes →GO TO Section 2

[ ] No

30. Because of your cancer, its treatment, or the lasting effects of that treatment, did you delay retirement beyond when you had planned?

[ ] Yes

[ ] No

Section 2. Other Aspects of Work

Please continue to think about all your work experiences from the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

31. Did you ever feel that your cancer, its treatment, or the lasting affects of that treatment interfered with your ability to perform any physical tasks required by your job?

[ ] Yes

[ ] No

[ ] I was never required to perform physical tasks as part of my job

32. Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability to perform any mental tasks required by your job?

[ ] Yes

[ ] No

33. Did you ever feel that, because of your cancer, its treatment, or the lasting effects of that treatment, you were less productive at work?

[ ] Yes

[ ] No

34. Did you ever worry that, because of the effects of cancer on your health, you might be forced to retire or quit work before you are ready?

[ ] Yes

[ ] No

35. Did you ever stay at a job in part because you were concerned about losing your health insurance?

[ ] Yes

[ ] No →GO TO Question 37

36. Were you concerned about losing your health insurance because of your cancer?

[ ] Yes

[ ] No

37. Thinking about your work life or career, what effect has your experience with cancer, its treatment, or the lasting effects of that treatment had on it?

[ ] Mostly positive effect

[ ] Mostly negative effect

[ ] Equally positive and negative effect

[ ] Neither positive nor negative effect

38. Did your spouse or significant other ever stay at a job in part because he/she was concerned about losing health insurance for the family?

[ ] Yes

[ ] No

[ ] Does not apply

Availability

Available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Life Stage

Adult

Participants

18 years and older

Selection Rationale

Research using the MEPS Experience with Cancer Survivorship Sections 2 and 3 can be used to understand the effects cancer treatment has on a cancer patient’s employment.

Language

English, Spanish

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Cancer Outcome Burden on Employment Medical Expenditure Panel Survey Assessment Text 7533596 CDE Browser
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Medical Expenditure Panel Survey (MEPS)

Source

The Agency for Healthcare Research and Quality and The Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services.2011. Medical Expenditure Panel Survey Experiences with Cancer Supplemental Questionnaire, Section 2 (9-29) and Section 3 (40-47)

General References

Yabroff, K. R., Dowling, E., Rodriguez, J., Ekwueme, D. U., Meissner, H., Soni, A., … Virgo, K. S. (2012). The Medical Expenditure Panel Survey (MEPS) experiences with cancer survivorship supplement. Journal of cancer survivorship : research and practice, 6(4), 407–419. doi:10.1007/s11764-012-0221-2

Ekwueme, D. U., Yabroff, K. R., Guy, G. P., Jr, Banegas, M. P., de Moor, J. S., Li, C., … Centers for Disease Control and Prevention (CDC) (2014). Medical costs and productivity losses of cancer survivors--United States, 2008-2011. MMWR. Morbidity and mortality weekly report, 63(23), 505–510.

Guy, G. P., Jr, Ekwueme, D. U., Yabroff, K. R., Dowling, E. C., Li, C., Rodriguez, J. L., … Virgo, K. S. (2013). Economic burden of cancer survivorship among adults in the United States. Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 31(30), 3749–3757. doi:10.1200/JCO.2013.49.1241

Guy, G. P., Jr, Yabroff, K. R., Ekwueme, D. U., Rim, S. H., Li, R., & Richardson, L. C. (2017). Economic Burden of Chronic Conditions Among Survivors of Cancer in the United States. Journal of clinical oncology : official journal of the American Society of Clinical Oncology, 35(18), 2053–2061. doi:10.1200/JCO.2016.71.9716

Protocol ID

320101

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Cancer Outcomes and Survivorship
Measure Name

Burden of Cancer on Employment

Release Date

December 17, 2020

Definition

The employment section of the Medical Expenditure Panel Survey (MEPS - SAQ 2011) covers questions about each person’s employment or self-employment status. For persons who are currently employed, questions ask about periods of unpaid leave at their job. For those not currently employed, questions ask about previous jobs and the reasons for not working.

Purpose

Research on the extent to which the challenges of managing the cancer survivors’ employment issues and patterns are essential to understanding the employment challenges which can, in turn, lead to long-term unemployment among cancer survivors.

Keywords

Cancer outcomes and survivorship, employment, occupation, job, MEPS, Medical Expenditure Panel Survey (MEPS), work, work status, employment status