Abstract
Purpose
The purpose of this study was to reduce the 188-item Swedish Lymphedema Quality of Life Inventory (SLQOLI) to an abbreviated, clinically useful version (phase 1) and to test it for reliability and validity (phase 2).
Methods
In phase 1 correlation analysis, factor analysis, content validity assessment and expert panels were used to reduce the number of items in SLQOLI to 45 items, which was named, Lymphedema Quality of Life Inventory (LyQLI). In phase 2, LyQLI was sent to 200 patients with lymphedema. 126 patients completed the questionnaire twice to determine stability of the instrument over time. SF-36 was sent to the patients once, correlations between the three domains in LyQLI and the two sum scores Physical Health (PCS) and Mental Health (MCS) in SF-36 were used to assess concurrent validity.
Results
The 188-item SLQOLI was reduced to 45-item LyQLI. Four domains were reduced to three: physical, psychosocial and practical. Reliability estimates using ICC for the physical and psychosocial domains were 0.88 (p < 0.01) and 0.87 (p < 0.01), for the practical domain 0.87 (p < 0.01). Cronbach’s alpha coefficients for the three domains were 0.88, 0.92 and 0.88, respectively. The physical domain correlated highly significantly with PCS, psychosocial highly significantly with MCS and practical equally highly significantly to both PCS and MCS. Using skewness coefficients, small floor effects in the items were found.
Conclusion
The shorter LyQLI demonstrated good reliability and validity with potential use to assess quality of life in clinic settings and in further cross-sectional studies of patients with lymphedema.
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Acknowledgments
This study was supported by research grants from the Cancer Foundation in Sweden. The authors would also like to thank all the patients for their participation.
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Appendix “Lymphedema Quality of Life Inventory (LyQLI)”
Appendix “Lymphedema Quality of Life Inventory (LyQLI)”
This questionnaire is concerned with the way lymphedema may affect your quality of life and activities of daily living.
You may have experienced very mild lymphedema, moderate or severe symptoms. You may have lived with your symptoms for a short or long period of time.
Please answer these questions only as they concern your lymphedema
The questionnaire consists of three parts
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Physical
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Psychosocial
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Practical
Please think about your Lymphedema and your Quality of Life during the past four weeks. When it comes to questions that depend on seasons, think about the past year.
For each question circle the answer that best matches your experiences. Try to answer all questions. If a question does not seem to apply to you, please circle the choice that says “None”
Physical concerns due to lymphedema | How much do these concerns affect your quality of life? | ||||
|---|---|---|---|---|---|
1 | Pain/aches due to my lymphedema | None | A little bit | Somewhat | A lot |
2 | Discomfort due to my lymphedema | None | A little bit | Somewhat | A lot |
3 | A feeling of heaviness due to my lymphedema | None | A little bit | Somewhat | A lot |
4 | Pins and needles/numbness due to my lymphedema | None | A little bit | Somewhat | A lot |
5 | Burning sensation/heat due to my lymphedema | None | A little bit | Somewhat | A lot |
6 | Swelling/tightness due to my lymphedema | None | A little bit | Somewhat | A lot |
7 | Skin problems due to my lymphedema | None | A little bit | Somewhat | A lot |
8 | Difficulty sleeping due to my lymphedema | None | A little bit | Somewhat | A lot |
9 | Movement difficulties due to my lymphedema | None | A little bit | Somewhat | A lot |
10 | Feeling physically aware of my lymphedema all the time | None | A little bit | Somewhat | A lot |
11 | Feeling a loss of strength in the swollen part of my body | None | A little bit | Somewhat | A lot |
12 | Infection (e.g., cellulitis, erysipelas) | None | A little bit | Somewhat | A lot |
Psychosocial concerns due to lymphedema | How much do these concerns affect your quality of life? | ||||
|---|---|---|---|---|---|
13 | Feelings of frustration/feeling annoyed | None | A little bit | Somewhat | A lot |
14 | Feeling anxious about whether or not the lymphedema will get worse | None | A little bit | Somewhat | A lot |
15 | Embarrassed by lymphedema/compression garments | None | A little bit | Somewhat | A lot |
16 | Negative changes in how I see myself | None | A little bit | Somewhat | A lot |
17 | Feeling discouraged | None | A little bit | Somewhat | A lot |
18 | Not being able to do the things I used to enjoy | None | A little bit | Somewhat | A lot |
19 | Concerns about when to seek medical attention | None | A little bit | Somewhat | A lot |
20 | Paying constant attention to my condition | None | A little bit | Somewhat | A lot |
21 | Concerns about how my lymphedema affects my existing relationships | None | A little bit | Somewhat | A lot |
22 | Concerns about how lymphedema could affect new relationships | None | A little bit | Somewhat | A lot |
23 | Negative changes in my feelings about intimacy/sexuality | None | A little bit | Somewhat | A lot |
24 | Feeling uncomfortable/embarrassed while doing sports and hobbies | None | A little bit | Somewhat | A lot |
25 | Feeling uncomfortable/embarrassed when attending social activities with friends and at work | None | A little bit | Somewhat | A lot |
26 | Having to ask for help in different situations | None | A little bit | Somewhat | A lot |
27 | Concerns about negative changes in my appearance | None | A little bit | Somewhat | A lot |
28 | Having to answer questions about my lymphedema | None | A little bit | Somewhat | A lot |
Practical concerns due to lymphedema | How much do these concerns affect your quality of life? | ||||
|---|---|---|---|---|---|
29 | Personal activities of daily living (e.g., dressing, combing hair, foot care) | None | A little bit | Somewhat | A lot |
30 | Normal daily activities (e.g., doing housework, sports and hobby activities) | None | A little bit | Somewhat | A lot |
31 | Employment activities | None | A little bit | Somewhat | A lot |
32 | Learning to do things differently | None | A little bit | Somewhat | A lot |
33 | Having less energy to do activities (e.g., personal, normal daily or employment) | None | A little bit | Somewhat | A lot |
34 | Financial costs of managing my lymphedema (e.g., clothes, shoes, treatments, garments) | None | A little bit | Somewhat | A lot |
35 | Finding well-functioning compression garments (e.g., stockings, sleeves, gloves) | None | A little bit | Somewhat | A lot |
36 | Traveling long distances by car, train, plane etc. | None | A little bit | Somewhat | A lot |
37 | Finding clothes and shoes that are comfortable and attractive, the right size and type of material | None | A little bit | Somewhat | A lot |
38 | Limitations in hot weather/sun | None | A little bit | Somewhat | A lot |
39 | The constant self-care I need to do to stop my lymphedema from getting worse | None | A little bit | Somewhat | A lot |
40 | Obtaining information about how to manage my lymphedema | None | A little bit | Somewhat | A lot |
41 | Being prepared for emergencies (e.g., always having a script for antibiotics) | None | A little bit | Somewhat | A lot |
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Klernäs, P., Johnsson, A., Horstmann, V. et al. Lymphedema Quality of Life Inventory (LyQLI)-Development and investigation of validity and reliability. Qual Life Res 24, 427–439 (2015). https://doi.org/10.1007/s11136-014-0783-8
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DOI: https://doi.org/10.1007/s11136-014-0783-8