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Protocol - Quality of Life in Cancer Survivors - Long-term

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Description

A self-report 41-item Likert style questionnaire representing the four domains of quality of life including physical well-being, psychological well-being, social well-being and spiritual well-being.

Specific Instructions

The patient is asked to read each question and decide if s/he agrees or disagrees with each statement. Then, the patient is asked to circle a number to indicate the degree to which s/he agrees or disagrees with the statement according to the word anchors on each end of the scale.

Protocol

We are interested in knowing how your experience of having cancer affects your quality of life. Please answer all of the following questions based on your life at this time. Please circle the number from 0 to 10 that best describes your experiences:

Physical Well Being

To what extent are the following a problem for you:

1. Fatigue

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

2. Appetite changes

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

3. Aches or pain

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

4. Sleep changes

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

5. Constipation

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

6. Nausea

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

7. Menstrual changes or fertility

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

8. Rate your overall physical health

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

extremely poorexcellent

Psychological Well Being Items

9. How difficult is it for you to cope as a result of your disease and treatment?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all difficultextremely difficult

10. How good is your quality of life ?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

extremely poorexcellent

11. How much happiness do you feel?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

12. Do you feel like you are in control of things in your life ?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at allcompletely

13. How satisfying is your life ?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at allcompletely

14. How is your present ability to concentrate or to remember things?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

extremely poorexcellent

15. How useful do you feel?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at allextremely

16. Has your illness or treatment caused changes in your appearance?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at allextremely

17. Has your illness or treatment caused changes in your self concept (the way you see your self?)

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at allextremely

How distressing were the following aspects of your illness and treatment?

18. Initial diagnosis

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all distressingvery distressing

19. Cancer treatments (i.e., chemother apy, radiation, or surgery)

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all distressingvery distressing

20. Time since my treatment was completed

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all distressingvery distressing

21. How much anxiety do you have?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

22. How much depression do you have?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

To what extent are you fearful of:

23. Future diagnostic test

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no fearextreme fear

24. A second cancer

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no fearextreme fear

25. Recurrence of your cancer

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no fearextreme fear

26. Spreading (metastasis) of your cancer

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no fearextreme fear

Social Concerns

27. How distressing has your illness been for your family?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

28. Is the amount of support you receive from other s sufficient to meet your needs?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

29. To what degree has your illness or treatment interfered with your personal relationships?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

30. Is your sexuality impacted by your illness?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

31. To what degree has your illness or treatment interfered with your employment?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

32. To what degree has your illness or treatment interfered with your activities at home?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

no problemsevere problem

33. How much isolation do you feel is caused by your illness or treatment?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

34. How much financial burden have you in curred as a result of your illness and treatment?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

Spiritual Well Being

35. How important to you is your participation in religious activities such as praying, going to church?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all importantvery important

36. How important to you are other spiritual activities such as mediation?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all importantvery important

37. How much has your spiritual life changed as a result of your cancer diagnosis?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

less importantmore important

38. How much uncertainty do you feel about your future?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all uncertainvery uncertain

39. To what extent has your illness made positive changes in your life ?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at alla great deal

40. Do you sense a purpose/missionfor your life or a reason for being alive?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

none at alla great deal

41. How hopeful do you feel?

 [ ]  0

 [ ]  1

 [ ]  2

 [ ]  3

 [ ]  4

 [ ]  5

 [ ]  6

 [ ]  7

 [ ]  8

 [ ]  9

 [ ]  10

not at all hopefulvery hopeful

Scoring

The scoring should be based on a scale of 0 = worst outcome to 10 = best outcome. Several items have reverse anchors and therefore when you code the items you will need to reverse the scores of those items. For example, if a participant circles "3" on such an item, (10-3 = 7), you would record a score of 7. The items to be reversed coded are: 1-7, 9, 16-27, 29-34 and 38. Subscale scores can be created for analysis purposes by adding all of the items within a subscale and creating a mean score.

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, Senior

Participants

16 years of age and older

Selection Rationale

Unlike other quality of life instruments, this one is specifically focused on cancer patients and survivors. This instrument is also available in Spanish.

Language

English, Spanish

Standards
StandardNameIDSource
caDSR Common Data Elements (CDE) Cancer Outcome Quality of Life Patient/Cancer Survivor Version (QOL-CSV) Assessment Text 7533693 CDE Browser
Derived Variables

None

Process and Review

Not Applicable

Protocol Name from Source

Quality of Life Patient/Cancer Survivor Version (QOL-CSV)

Source

Ferrell, B. R., Hassey-Dow, K., Grant, M.. (2012). Quality of Life Patient/Cancer Survivor Version (QOL-CSV). Measurement Instrument Database for the Social Science. Retrieved from www.midss.ie

Ferrell BR, Dow KH, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res. 1995;4(6):523–531. doi:10.1007/bf00634747

General References

Ferrell BR, Hassey-Dow K, Grant M. “Measurement of the QOL in Cancer Survivors.” Quality of Life Research, 1995; 4:523-531.

Ferrell BR, Hassey-Dow K, Leigh S, Ly J, Gulasekaram P. “Quality of Life in Long-Term Cancer Survivors.” Oncology Nursing Forum, 1995; 22(6):915-922.

Ferrell BR. “The Quality of Lives: 1,525 Voices of Cancer.” Oncology Nursing Forum, 1996; 23(6):907-916.

Ferrell BR, Dow KH. “Portraits of Cancer Survivorship: A Glimpse through the Lens of Survivors’ Eyes.” Cancer Practice, 1996; 4(2):76-80.

Ferrell B, Hassey-Dow K. “Quality of Life Among Long-Term Cancer Survivors.” Oncology, 1997; 11(4):565-576.

Juarez G, Ferrell BR, Borneman T. “Perceptions of Quality of Life in Hispanic Patients with Cancer.” Cancer Practice, 1998; 6(6):318-324.

Hassey-Dow K, Ferrell B, Haberman M. “The Meaning of QOL in Cancer Survivors.” Oncology Nursing Forum, 1999; 26(3):519-528.

Hassey-Dow K, Ferrell BR, Haberman MR, & Eaton L. “The meaning of quality of life in cancer survivorship.” Oncology Nursing Forum, 1999; 26(3):519-528.

Ferrell B, Virani R, Smith S, Juarez G. “The Role of Oncology Nursing to Ensure Quality Care for Cancer Survivors: A Report Commissioned by the National Cancer Policy Board and Institute of Medicine.” Oncology Nursing Forum, 2003; 30(1):E1-11 (online exclusive).

Chopra, I., & Kamal, K. M. (2012). A systematic review of quality of life instruments in long-term breast cancer survivors. Health and quality of life outcomes, 10, 14. https://doi.org/10.1186/1477-7525-10-14

Protocol ID

320902

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

Quality of Life in Cancer Survivors

Release Date

December 17, 2020

Definition

Questionnaire assessing health-related quality of life in cancer survivors.

Purpose

Concerns about health-related quality of life are important to cancer survivors and their families, as well as caregivers and care providers.

Keywords

European Organisation for the Research and Treatment of Cancer (EORTC): Cancer Outcomes and Survivorship