Abstract
Introduction
Quality of life has become an important measure of treatment success and is currently being explored not only for patients on active treatment, but also for long-term breast cancer survivors. The long-term quality of life breast cancer scale (LTQOL-BC) is a tool to assess QOL in breast cancer survivors. This study aimed to validate the tool with health care professionals (HCPs).
Methods
Six HCPs with extensive experience working with breast cancer survivors were selected. HCPs completed the LTQOL-BC and were asked to assess the relevance of each included item to the disease-free breast cancer population. They were also instructed to identify items that could be upsetting for patients, irrelevant to this population, and to assess the tool’s breadth of coverage.
Results
Feedback indicated that some items such as the body image and sexual functioning questions were potentially upsetting to patients and should be rephrased or removed. The overall breadth of coverage of the tool was inadequate, with employment status, economic situation, ability to meet needs of family, health care insurance coverage, and overall sense of well-being not being addressed by the LTQOL-BC. HCPs also identified that certain items should be edited including those specifying pain in the lower body and the item containing the term “homemaker”.
Conclusion
The LTQOL-BC may need to be modified to take into the recommendations provided by HCPs.
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Acknowledgments
We thank the generous support of Bratty Family Fund, Michael and Karyn Goldstein Cancer Research Fund, Pulenzas Cancer Research Fund, Joseph and Silvana Melara Cancer Research Fund, and Ofelia Cancer Research Fund.
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Appendix 1: HCP content validation of LTQOL-BC for disease free patients
Appendix 1: HCP content validation of LTQOL-BC for disease free patients
Long-term quality of life–breast cancer scale
PART A: Relevance
Could you please indicate for each issue separately the extent to which you find it relevant for patients that are disease free from breast cancer (response categories may range from (5) “strongly agree relevant” to (1) “strongly disagree, not relevant”). Relevance refers to the frequency with which a specific complaint occurs and, when it occurs, the trouble it may cause. Thus, the more frequently a complaint occurs and the more trouble it causes, the more relevant it will be for patients. Please also indicate if this item should be included in the final questionnaire.
RELEVANT? | ||||||
Strongly agree | Agree | No opinion | Disagree | Strongly disagree | Include in final? | |
Physical function | ||||||
1. I am physically strong.a | 5 | 4 | 3 | 2 | 1 | YES/NO |
2. I feel fatigued all the time. | 5 | 4 | 3 | 2 | 1 | YES/NO |
3. I have difficulty walking up or down stairs. | 5 | 4 | 3 | 2 | 1 | YES/NO |
4. I find it difficult doing physical activities such as housework. | 5 | 4 | 3 | 2 | 1 | YES/NO |
5. I have restrictions of movement in my arms | 5 | 4 | 3 | 2 | 1 | YES/NO |
6. I have aching or pain in my lower body and legs. | 5 | 4 | 3 | 2 | 1 | YES/NO |
7. I have or had trouble getting or keeping a job/functioning as a homemaker. | 5 | 4 | 3 | 2 | 1 | YES/NO |
Body image | ||||||
8. I do not feel feminine or especially attractive. | 5 | 4 | 3 | 2 | 1 | YES/NO |
9. I feel incomplete as a woman. | 5 | 4 | 3 | 2 | 1 | YES/NO |
10. Since having had breast cancer I feel cheated. | 5 | 4 | 3 | 2 | 1 | YES/NO |
11. Since having had breast cancer I feel incomplete. | 5 | 4 | 3 | 2 | 1 | YES/NO |
Sexual function | ||||||
12. Intimate relationships are difficult for me. | 5 | 4 | 3 | 2 | 1 | YES/NO |
13. I have little sexual interest. | 5 | 4 | 3 | 2 | 1 | YES/NO |
14. Sexual intimacy is easy for me.a | 5 | 4 | 3 | 2 | 1 | YES/NO |
Coping | ||||||
15. I take each day and make the most of it. | 5 | 4 | 3 | 2 | 1 | YES/NO |
16. I appreciate things and don’t take them for granted. | 5 | 4 | 3 | 2 | 1 | YES/NO |
17. I don’t sweat the small stuff. | 5 | 4 | 3 | 2 | 1 | YES/NO |
18. I am a stronger person since surviving my breast cancer.a | 5 | 4 | 3 | 2 | 1 | YES/NO |
Cognitive function | ||||||
19. I have difficulty remembering things. | 5 | 4 | 3 | 2 | 1 | YES/NO |
20. I can concentrate easily a | 5 | 4 | 3 | 2 | 1 | YES/NO |
21. I have difficulty thinking clearly. | 5 | 4 | 3 | 2 | 1 | YES/NO |
Social support | ||||||
22. I can count on those closest to me for everyday help.a | 5 | 4 | 3 | 2 | 1 | YES/NO |
23. I am alone. | 5 | 4 | 3 | 2 | 1 | YES/NO |
24. I have friends who would help me if I had a crisis.a | 5 | 4 | 3 | 2 | 1 | YES/NO |
Anxiety | ||||||
25. When I get sick I feel very anxious. | 5 | 4 | 3 | 2 | 1 | YES/NO |
26. I feel uncertain about things. | 5 | 4 | 3 | 2 | 1 | YES/NO |
27. I make very frequent visits to the doctor. | 5 | 4 | 3 | 2 | 1 | YES/NO |
28. I think about my breast cancer every day.a | 5 | 4 | 3 | 2 | 1 | YES/NO |
aDenotes a question recoded so that it is consistent with direction of other questions.
Scoring is 5, strongly agree; 4, agree; 3, no opinion; 2, disagree; 1, strongly disagree
1. If you circled “Yes” for more than 10 issues (in Part A), please indicate which 5 to 10 issues affect the quality of life of disease free breast cancer patients most profoundly, that we should definitely include in the final questionnaire. (Items do not need to be ranked)
2. Could you please tell me for each issue that you circled a 1 (“strongly disagree, not relevant”) or 2 (“disagree, not relevant”) why you consider it not or only a little relevant?
3. Please let us know if you think any of the questions are inappropriate, irrelevant, or upsetting to patients.
PART B: Breadth of Coverage
Please read and review the LTQOL-BC. This is a long-term questionnaire that was designed to assess quality of life of breast cancer patients that are disease free. You may have thought of other things that are not included in this questionnaire or the previous list of issues you have just rated.
Can you think of anything else that may be of relevance to disease free breast cancer patients and is not included in the two questionnaires? (please circle)
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Ecclestone, C., Verma, S., Leahey, A. et al. Validation of the long-term quality of life breast cancer scale (LTQOL-BC) by health care professionals. Support Care Cancer 23, 1629–1635 (2015). https://doi.org/10.1007/s00520-014-2515-6
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DOI: https://doi.org/10.1007/s00520-014-2515-6