Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population
Abstract
:1. Introduction
2. Materials and Methods
2.1. Instrumentation
2.2. Participant and Procedure
2.3. Data Analysis
3. Results
3.1. Respondent Characteristics
3.2. Principle Components Analysis and Reliability
3.3. Test-Retest
4. Discussion
5. Study Limitations
6. Practice Implications
7. Research Recommendations
8. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
Availability of Data and Materials
References
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Characteristics of Family Carers | n | % |
---|---|---|
Women | 61 | 68 |
Age (years) | 48.78 (±15.21) | |
Main carer | 52 | 57.8 |
Marital status | ||
Married | 52 | 57.8 |
Single | 17 | 18.9 |
Widowed | 13 | 14,4 |
Partnership | 5 | 5.6 |
Divorced | 3 | 3.3 |
Family situation | ||
Number of years since HD knowledge in family | 11.76 (±10.4) | |
Have children at risk | 37 | 41.1 |
Relation with HD patient | ||
Husband/wife | 31 | 34.4 |
Parent | 26 | 28.9 |
Child | 14 | 15.6 |
Other | 10 | 11 |
Sibling | 8 | 8.9 |
Partner | 1 | 1.2 |
Carer background | ||
Carer has previously cared any other HD affected person | 17 | 19 |
Duration of caring (in years) | 7.81 (±8.48) |
Item | Content | Factor | |
---|---|---|---|
1 | 2 | ||
Qol2_3 | How often do you have access to professionals that have specialized knowledge of HD and understand its implications? | 0.827 | –0.072 |
Qol2_4 | How much support are you given by health care professionals? | 0.788 | –0.030 |
Qol2_6 | How often do you have access to appropriate care facilities? | 0.766 | 0.004 |
Qol2_7 | How often do you receive any practical support you need? | 0.754 | 0.036 |
Qol2_2 | How often do you receive appropriate help from social services? | 0.610 | –0.334 |
Qol2_1 | How often are you restricted by the need to maintain a regimented daily routine? | 0.039 | 0.816 |
Qol2_8 | How often do you experience a conflict of interest between what you want and what your HD affected relative wants? | 0.067 | 0.741 |
Qol2_5 | How often does the inherited nature of HD further complicate your caring role? | –0.117 | 0.667 |
Qol2_9 | How often do you sleep well? | –0.087 | 0.337 |
Item | Content | Factor | |
---|---|---|---|
1 | 2 | ||
Qol3_2 | How satisfied are you with what you achieve in life? | 0.860 | –0.128 |
Qol3_8 | How satisfied are you with your overall quality of life? | 0.825 | 0.246 |
Qol3_4 | How satisfied are you with how safe you feel? | 0.811 | 0.223 |
Qol3_1 | How satisfied are you with your health? | 0.792 | 0.000 |
Qol3_6 | How satisfied are you with your own happiness? | 0.763 | 0.329 |
Qol3_5 | How satisfied are you with feeling a part of your community? | 0.656 | 0.373 |
Qol3_3 | How satisfied are you with your close relationships with family or friends? | 0.566 | 0.464 |
Qol3_7 | How satisfied are you with the treatment that your HD affected relative receives? | 0.019 | 0.926 |
Item | Content | Factor | |||
---|---|---|---|---|---|
1 | 2 | 3 | 4 | ||
Qol4_7 | I feel sad or depressed | 0.775 | 0.052 | 0.310 | 0.097 |
Qol4_17 | I feel like I don’t know who I am anymore | 0.765 | 0.087 | –0.017 | 0.006 |
Qol4_8 | I feel stressed | 0.749 | 0.051 | 0.143 | 0.129 |
Qol4_5 | I feel exhausted | 0.729 | 0.126 | 0.186 | –0.161 |
Qol4_16 | I feel that I have had a “duty of care” forced on me | 0.711 | –0.166 | –0.269 | 0.213 |
Qol4_10 | I feel my own needs are not important to others | 0.645 | –0.063 | 0.400 | –0.157 |
Qol4_3 | I feel isolated | 0.592 | 0.213 | 0.282 | –0.154 |
Qol4_4 | I feel there is hope for the future | 0.036 | 0.797 | 0.287 | 0.004 |
Qol4_11 | I feel comforted by the belief that one day there will be a cure for HD | 0.024 | 0.773 | –0.155 | 0.160 |
Qol4_13 | I feel comforted by my beliefs | 0.060 | 0.674 | 0.084 | 0.253 |
Qol4_9 | I feel worried about the genetic consequences of HD | 0.038 | –0.024 | 0.793 | 0.131 |
Qol4_1 | I feel guilty | 0.220 | 0.080 | 0.590 | –0.006 |
Qol4_6 | I feel supported | 0.176 | 0.386 | 0.474 | 0.125 |
Qol4_12 | I feel that HD brought something positive to my life | –0.029 | 0.334 | 0.076 | 0.701 |
Qol4_15 | I feel that HD has made me a stronger person | 0.166 | 0.404 | 0.246 | 0.673 |
Qol4_2 | I feel financially disadvantaged | 0.424 | 0.179 | 0.170 | –0.583 |
Qol4_14 | I feel that I can cope | 0.282 | 0.322 | 0.467 | 0.546 |
Sub-scales | II | III | IV |
---|---|---|---|
II | 0.82 | - | - |
III | - | 0.92 | - |
IV | - | - | 0.83 |
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Bartoszek, A.; Aubeeluck, A.; Stupple, E.; Bartoszek, A.; Kocka, K.; Ślusarska, B. Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population. Int. J. Environ. Res. Public Health 2019, 16, 2323. https://doi.org/10.3390/ijerph16132323
Bartoszek A, Aubeeluck A, Stupple E, Bartoszek A, Kocka K, Ślusarska B. Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population. International Journal of Environmental Research and Public Health. 2019; 16(13):2323. https://doi.org/10.3390/ijerph16132323
Chicago/Turabian StyleBartoszek, Agnieszka, Aimee Aubeeluck, Edward Stupple, Adrian Bartoszek, Katarzyna Kocka, and Barbara Ślusarska. 2019. "Exploring the Reliability and Validity of the Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) within A Polish Population" International Journal of Environmental Research and Public Health 16, no. 13: 2323. https://doi.org/10.3390/ijerph16132323