Effect of caregiver burden on the quality of life of informal caregivers of people with cystic fibrosis in the United Kingdom: a cross-sectional study

Your Life and CF Report 2023.pdf. (n.d.). Retrieved from https://www.cysticfibrosis.org.uk/sites/default/files/2023-06/Your%20Life%20and%20CF%20Report%202023.pdf

Daly, C., Ruane, P., O’Reilly, K., Longworth, L., & Vega-Hernandez, G. (2022). Caregiver burden in cystic fibrosis: A systematic literature review. Therapeutic Advances in Respiratory Disease. https://doi.org/10.1177/17534666221086416

Article  PubMed  PubMed Central  Google Scholar 

Montiel, A. F., Fernández, A. Á., Amigo, M. C., Traversi, L., Alarcón, D. C., Reyes, K. L., & Polverino, E. (2024). The ageing of people living with cystic fibrosis: What to expect now? European Respiratory Review. https://doi.org/10.1183/16000617.0071-2024

Article  Google Scholar 

Neri, L., Lucidi, V., Catastini, P., Colombo, C., the LINFA Study Group. (2016). Caregiver burden and vocational participation among parents of adolescents with CF: Caregiver Burden and Vocational Participation. Pediatric Pulmonology, 51(3), 243–252. https://doi.org/10.1002/ppul.23352

Article  PubMed  Google Scholar 

Chevreul, K., Michel, M., Brigham, K. B., López-Bastida, J., Linertová, R., Oliva-Moreno, J., Serrano-Aguilar, P., Posada-de-la-Paz, M., Taruscio, D., Schieppati, A., Iskrov, G., Péntek, M., von der Schulenburg, J. M., Kanavos, P., Persson, U., Fattore, G., BURQOL-RD Research Network. (2016). Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. The European Journal of Health Economics, 17(1), 7–18. https://doi.org/10.1007/s10198-016-0781-6

Article  PubMed  Google Scholar 

Quittner, A. L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., Tibosch, M. M., Bergsten Brucefors, A., Yüksel, H., Catastini, P., Blackwell, L., & Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: Results of The International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090–1097. https://doi.org/10.1136/thoraxjnl-2014-205983

Article  PubMed  Google Scholar 

Gheera, M. (2025). Informal carers health and wellbeing. Retrieved from https://commonslibrary.parliament.uk/research-briefings/cbp-10020/

nhs-long-term-plan-version-1.2.pdf. (n.d.). Retrieved from https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf

Karimi, M., & Brazier, J. (2016). Health, health-related quality of life, and quality of life: What is the difference? PharmacoEconomics, 34(7), 645–649. https://doi.org/10.1007/s40273-016-0389-9

Article  PubMed  Google Scholar 

Liu, Z., Heffernan, C., & Tan, J. (2020). Caregiver burden: A concept analysis. International Journal of Nursing Sciences, 7(4), 438–445. https://doi.org/10.1016/j.ijnss.2020.07.012

Article  PubMed  PubMed Central  Google Scholar 

EuroQol Group. (1990). EuroQol – A new facility for the measurement of health-related quality of life. Health Policy, 16(3), 199–208. https://doi.org/10.1016/0168-8510(90)90421-9

Article  Google Scholar 

Keetharuth, A. D., Brazier, J., Connell, J., Bjorner, J. B., Carlton, J., Taylor Buck, E., Ricketts, T., McKendrick, K., Browne, J., Croudace, T., & Barkham, M. (2018). Recovering Quality of Life (ReQoL): A new generic self-reported outcome measure for use with people experiencing mental health difficulties. The British Journal of Psychiatry, 212(1), 42–49. https://doi.org/10.1192/bjp.2017.10

Article  PubMed  PubMed Central  Google Scholar 

Brouwer, W. B. F., van Exel, N. J. A., van Gorp, B., & Redekop, W. K. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15(6), 1005–1021. https://doi.org/10.1007/s11136-005-5994-6

Article  CAS  PubMed  Google Scholar 

Rand, S. E., Malley, J. N., Netten, A. P., & Forder, J. E. (2015). Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Quality of Life Research, 24(11), 2601–2614. https://doi.org/10.1007/s11136-015-1011-x

Article  PubMed  PubMed Central  Google Scholar 

Donadio, M. V. F., Vendrusculo, F. M., & Pérez-Ruiz, M. (2020). Scoring tools to monitor risk of disease progression in patients with cystic fibrosis. Journal of Thoracic Disease, 12(8), 3940–3943. https://doi.org/10.21037/jtd.2020.03.121

Article  PubMed  PubMed Central  Google Scholar 

Schluchter, M. D., Konstan, M. W., Drumm, M. L., Yankaskas, J. R., & Knowles, M. R. (2006). Classifying severity of cystic fibrosis lung disease using longitudinal pulmonary function data. American Journal of Respiratory and Critical Care Medicine, 174(7), 780–786. https://doi.org/10.1164/rccm.200512-1919OC

Article  PubMed  PubMed Central  Google Scholar 

Qualtrics. (2015, June 17). Tips for reducing survey question order bias. Qualtrics. Retrieved June 4, 2024, from https://www.qualtrics.com/blog/biased-data-is-bad-data-how-to-think-about-question-order/

Herdman, M., Gudex, C., Lloyd, A., Janssen, M., Kind, P., Parkin, D., Bonsel, G., & Badia, X. (2011). Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Quality of Life Research, 20(10), 1727–1736. https://doi.org/10.1007/s11136-011-9903-x

Article  CAS  PubMed  PubMed Central  Google Scholar 

Kennedy-Martin, M., Slaap, B., Herdman, M., van Reenen, M., Kennedy-Martin, T., Greiner, W., Busschbach, J., & Boye, K. S. (2020). Which multi-attribute utility instruments are recommended for use in cost-utility analysis? A review of national health technology assessment (HTA) guidelines. The European Journal of Health Economics: HEPAC: Health Economics in Prevention and Care, 21(8), 1245–1257. https://doi.org/10.1007/s10198-020-01195-8

Article  PubMed  Google Scholar 

Introduction to health technology evaluation | NICE health technology evaluations: The manual | Guidance | NICE. (2022, January 31). NICE. Retrieved March 18, 2024, from https://www.nice.org.uk/process/pmg36/chapter/introduction-to-health-technology-evaluation

Lacey, R. E., Xue, B., Gessa, G. D., Lu, W., & McMunn, A. (2024). Mental and physical health changes around transitions into unpaid caregiving in the UK: A longitudinal, propensity score analysis. The Lancet Public Health, 9(1), e16–e25. https://doi.org/10.1016/S2468-2667(23)00206-2

Article  PubMed  Google Scholar 

Cheng, W.-L., Chang, C.-C., Griffiths, M. D., Yen, C.-F., Liu, J.-H., Su, J.-A., Lin, C.-Y., & Pakpour, A. H. (2022). Quality of life and care burden among family caregivers of people with severe mental illness: Mediating effects of self-esteem and psychological distress. BMC Psychiatry, 22(1), 672. https://doi.org/10.1186/s12888-022-04289-0

Article  PubMed  PubMed Central  Google Scholar 

Chang, H.-Y., Chiou, C.-J., & Chen, N.-S. (2010). Impact of mental health and caregiver burden on family caregivers’ physical health. Archives of Gerontology and Geriatrics, 50(3), 267–271. https://doi.org/10.1016/j.archger.2009.04.006

Article  PubMed  Google Scholar 

Voormolen, D. C., van Exel, J., Brouwer, W., Sköldunger, A., Gonçalves-Pereira, M., Irving, K., Bieber, A., Selbaek, G., Woods, B., Zanetti, O., Verhey, F., Wimo, A., & Handels, R. L. H. (2021). A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries. Quality of Life Research, 30(2), 577–588. https://doi.org/10.1007/s11136-020-02657-5

Article  PubMed  Google Scholar 

Silarova, B., Rand, S., Towers, A.-M., & Jones, K. (2023). Feasibility, validity and reliability of the ASCOT-Proxy and ASCOT-Carer among unpaid carers of people living with dementia in England. Health and Quality of Life Outcomes, 21(1), 54. https://doi.org/10.1186/s12955-023-02122-0

Article  PubMed  PubMed Central  Google Scholar 

McLoughlin, C., Goranitis, I., & Al-Janabi, H. (2020). Validity and responsiveness of preference-based quality-of-life measures in informal carers: A comparison of 5 measures across 4 conditions. Value in Health, 23(6), 782–790. https://doi.org/10.1016/j.jval.2020.01.015

Article  PubMed  PubMed Central  Google Scholar 

McCaffrey, N., Bucholc, J., Rand, S., Hoefman, R., Ugalde, A., Muldowney, A., Mihalopoulos, C., & Engel, L. (2020). Head-to-head comparison of the psychometric properties of 3 carer-related preference-based instruments. Value in Health, 23(11), 1477–1488. https://doi.org/10.1016/j.jval.2020.07.005

Article  PubMed  Google Scholar 

van Hout, B., Janssen, M. F., Feng, Y. S., Kohlmann, T., Busschbach, J., Golicki, D., Lloyd, A., Scalone, L., Kind, P., & Pickard, A. S. (2012). Interim scoring for the EQ-5D-5L: Mapping the EQ-5D-5L to EQ-5D-3L value sets. Value in Health, 15(5), 708–715. https://doi.org/10.1016/j.jval.2012.02.008

Article  PubMed  Google Scholar 

Keetharuth, A., Brazier, J. E., Rowen, D., & Bjorner, J. (2019). Estimating a preference-base index from the recovering quality of life measure for economic evaluation in the area of mental health: Valuation of ReQol-UI. Value in Health, 22, S685–S686. https://doi.org/10.1016/j.jval.2019.09.1503

Article  Google Scholar 

Hoefman, R. J., van Exel, J., & Brouwer, W. B. F. (2017). Measuring care-related quality of life of caregivers for use in economic evaluations: CarerQol tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics, 35(4), 469–478. https://doi.org/10.1007/s40273-016-0477-x

Article  PubMed  Google Scholar 

Batchelder, L., Malley, J., Burge, P., Lu, H., Saloniki, E. C., Linnosmaa, I., Trukeschitz, B., & Forder, J. (2019). Carer social care-related quality of life outcomes: Estimating English preference weights for the adult social care outcomes toolkit for carers. Value in Health, 22(12), 1427–1440. https://doi.org/10.1016/j.jval.2019.07.014

Article  PubMed 

Comments (0)

No login
gif