Validation and psychometric properties of the Consumer Financial Protection Bureau Financial Well-Being Scale (CFPB-FWBS) for Polish family caregivers of individuals with rare diseases
DOI:
https://doi.org/10.20883/medical.e1428Keywords:
CFPB-FWBS, family caregivers, financial burden, financial well-being, rare diseasesAbstract
Introduction. Caregivers of individuals with rare diseases (RDs) face numerous challenges related to healthcare access, physical and emotional strain, social isolation, and psychological distress; however, financial burden often has the most significant impact on family well-being and the ability to provide adequate care. This study aimed to validate the Consumer Financial Protection Bureau Financial Well-Being Scale (CFPB-FWBS) among caregivers of individuals with RD in Poland.
Material and methods. Based on a sample of 942 family caregivers of individuals diagnosed with one of 159 RDs, the validation procedure involved exploratory and confirmatory factor analyses, along with evaluation of internal consistency and interpretability.
Results. Analyses supported the unidimensional structure of the Polish CFPB-FWBS. Inter-item correlations were moderate to strong (r = .48–.68), except for Q9, which showed a weaker correlation. PCA confirmed a dominant first component (eigenvalue ≈ 5.7, explaining ~57% of variance), with all items loading adequately. Cronbach’s alpha was high (α = 0.92), and no item removal improved reliability. CFA indicated good model fit (χ²/df = 5.67, CFI = 0.968, TLI = 0.959, SRMR = 0.03, RMSEA = 0.07). Latent scores (0–100 scale) approximated a normal distribution (M = 50.5, SD = 12.1, range = 14–86).
Conclusions. The Polish version of the CFPB-FWBS demonstrates strong reliability, structural validity, and meaningful score distributions among caregivers of individuals with rare diseases. These findings support its use as a standardised measure of financial well-being in Poland, enabling research, policy development, and international comparisons.
Downloads
References
The Lancet Global Health null. The landscape for rare diseases in 2024. Lancet Glob Health. 2024 Mar;12(3):e341. https://doi.org/10.1016/S2214-109X(24)00056-1
Ministerstwo Zdrowia [Internet]. [cited August 14 2025]. Rada Ministrów przyjęła Plan dla Chorób Rzadkich na lata 2024-2025 - Ministerstwo Zdrowia - Portal Gov.pl. https://www.gov.pl/web/zdrowie/rada-ministrow-przyjela-plan-dla-chorob-rzadkich-na-lata-2024-2025
Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020 Feb;28(2):165–73. https://doi.org/10.1038/s41431-019-0508-0
Smith CIE, Bergman P, Hagey DW. Estimating the number of diseases – the concept of rare, ultra-rare, and hyper-rare. iScience [Internet]. 19 August 2022 [cited 28 July 2025];25(8). https://www.cell.com/iscience/abstract/S2589-0042(22)00970-1
Haendel M, Vasilevsky N, Unni D, Bologa C, Harris N, Rehm H, et al. How many rare diseases are there? Nat Rev Drug Discov. 2020 Feb;19(2):77–8. https://doi.org/10.1038/d41573-019-00180-y
Kancelaria Prezesa Rady Ministrów [Internet]. [cited 14 September 2025]. Projekt uchwały Rady Ministrów w sprawie przyjęcia dokumentu Plan dla Chorób Rzadkich na lata 2024-2025 - Kancelaria Prezesa Rady Ministrów - Portal Gov.pl. https://www.gov.pl/web/premier/projekt-uchwaly-rady-ministrow-w-sprawie-przyjecia-dokumentu-plan-dla-chorob-rzadkich-na-lata-2024-2025
What is a rare disease? [Internet]. EURORDIS-Rare Diseases Europe. [cited 28 August 2025]. https://www.eurordis.org/information-support/what-is-a-rare-disease
RARE Disease Facts [Internet]. Global Genes. [cited 28 August 2025]. https://globalgenes.org/rare-disease-facts
Domike R, Raju GK, Sullivan J, Kennedy A. Expediting treatments in the 21st century: orphan drugs and accelerated approvals. Orphanet Journal of Rare Diseases. 2024 Nov;19(1):418. https://doi.org/10.1186/s13023-024-03398-1
Fermaglich LJ, Miller KL. A comprehensive study of the rare diseases and conditions targeted by orphan drug designations and approvals over the forty years of the Orphan Drug Act. Orphanet J Rare Dis. 2023 Jun;18(1):163. https://doi.org/10.1186/s13023-023-02790-7
Claessens Z, Vanneste A, Van Isterdael C, Verbeke C, Wens I, Huys I. Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations. Orphanet Journal of Rare Diseases. 2025 Jul;20(1):321. https://doi.org/10.1186/s13023-025-03838-6
Mcmullan J, Lohfeld L, McKnight AJ. Needs of informal caregivers of people with a rare disease: a rapid review of the literature. BMJ Open. 2022 Dec;12(12):e063263. https://doi.org/10.1136/bmjopen-2022-063263
Rihm L, Dreier M, Rezvani F, Wiegand-Grefe S, Dirmaier J. The psychosocial situation of families caring for children with rare diseases during the COVID-19 pandemic: results of a cross-sectional online survey. Orphanet J Rare Dis. 2022 Dec;17:449. https://doi.org/10.1186/s13023-022-02595-0
Domaradzki J, Walkowiak D. Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study. Sci Rep. 2024 Jun;14(1):14016. https://doi.org/10.1038/s41598-024-63962-4
Currie G, Szabo J. „It is like a jungle gym, and everything is under construction”: The parent’s perspective of caring for a child with a rare disease. Child Care Health Dev. 2019 Jan;45(1):96–103. https://doi.org/10.1111/cch.12628
Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support. Orphanet J Rare Dis. 2013 Feb;8:22. https://doi.org/10.1186/1750-1172-8-22
Al-Attar M, Butterworth S, McKay L. A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of undiagnosed rare disease. Orphanet J Rare Dis. 2024 Apr;19:172. https://doi.org/10.1186/s13023-024-03143-8
Ramalle-Gómara E, Domínguez-Garrido E, Gómez-Eguílaz M, Marzo-Sola ME, Ramón-Trapero JL, Gil-de-Gómez J. Education and information needs for physicians about rare diseases in Spain. Orphanet J Rare Dis. 2020 Jan;15(1):18. https://doi.org/10.1186/s13023-019-1285-0
Walkowiak D, Domaradzki J. Are rare diseases overlooked by medical education? Awareness of rare diseases among physicians in Poland: an explanatory study. Orphanet J Rare Dis. 2021 Sep;16(1):400. https://doi.org/10.1186/s13023-021-02023-9
Zhang H, Xiao Y, Zhao X, Tian Z, Zhang SY, Dong D. Physicians’ knowledge on specific rare diseases and its associated factors: a national cross-sectional study from China. Orphanet J Rare Dis. 2022 Mar;17(1):120. https://doi.org/10.1186/s13023-022-02243-7
Walkowiak D, Bokayeva K, Miraleyeva A, Domaradzki J. The Awareness of Rare Diseases Among Medical Students and Practicing Physicians in the Republic of Kazakhstan. An Exploratory Study. Front Public Health. 2022 Apr;10:872648. https://doi.org/10.3389/fpubh.2022.872648
Rohani-Montez SC, Bomberger J, Zhang C, Cohen J, McKay L, Evans WRH. Educational needs in diagnosing rare diseases: A multinational, multispecialty clinician survey. Genet Med Open. 2023 Apr;1(1):100808. https://doi.org/10.1016/j.gimo.2023.100808
Jo A, Larson S, Carek P, Peabody MR, Peterson LE, Mainous AG. Prevalence and practice for rare diseases in primary care: a national cross-sectional study in the USA. BMJ Open. 2019 Apr;9(4):e027248. https://doi.org/10.1136/bmjopen-2018-027248
Angelis A, Kanavos P, López-Bastida J, Linertová R, Oliva-Moreno J, Serrano-Aguilar P, et al. Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1(Suppl 1):31–42. https://doi.org/10.1007/s10198-016-0783-4
Chung CCY, Ng NYT, Ng YNC, Lui ACY, Fung JLF, Chan MCY, et al. Socio-economic costs of rare diseases and the risk of financial hardship: a cross-sectional study. Lancet Reg Health West Pac. 2023 Feb;34:100711. https://doi.org/10.1016/j.lanwpc.2023.100711
Andreu P, Karam J, Child C, Chiesi G, Cioffi G. The Burden of Rare Diseases: An Economic Evaluation. https://www.ultragenyx.com/wp-content/uploads/2024/05/Chiesi-EconomicBurdenofRareDiseasesFeb.-2022.pdf
Domaradzki J, Pospieszyńska-Martysiuk K, Dianow H, Węgrzyn J, Walkowiak D. Psychological and psychiatric service use among family caregivers of individuals with Angelman Syndrome: A cross-sectional study. Psychiatr Pol. 2025;1–16. https://doi.org/10.12740/PP/OnlineFirst/206031
Strzelczyk A, Schubert-Bast S, Bast T, Bettendorf U, Fiedler B, Hamer HM, et al. A multicenter, matched case-control analysis comparing burden-of-illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany. Epilepsia. 2019 Aug;60(8):1697–710. https://doi.org/10.1111/epi.16099
Consumer Financial Protection Bureau [Internet]. 2024 [cited 2 September 2025]. Measuring financial well-being: A guide to using the CFPB Financial Well-Being Scale. https://www.consumerfinance.gov/data-research/research-reports/financial-well-being-scale/
von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP, et al. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008 Aug;61(4):344–9. https://doi.org/10.1016/j.jclinepi.2007.11.008
Chiarotti F, Kodra Y, De Santis M, Bellenghi M, Taruscio D, Carè A, et al. Gender and burden differences in family caregivers of patients affected by ten rare diseases. Ann Ist Super Sanita. 2023 Apr-Jun;59(2):122–31. https://doi.org/10.4415/ANN_23_02_05
Chu SY, Wen CC, Weng CY. Gender Differences in Caring for Children with Genetic or Rare Diseases: A Mixed-Methods Study. Children (Basel). 2022 Apr;9(5):627. https://doi.org/10.3390/children9050627
R: The R Project for Statistical Computing [Internet]. [cited 14 September 2025]. https://www.r-project.org/
Yang G, Cintina I, Pariser A, Oehrlein E, Sullivan J, Kennedy A. The national economic burden of rare disease in the United States in 2019. Orphanet J Rare Dis. 2022 Apr;17(1):163. https://doi.org/10.1186/s13023-022-02299-5
Yu J, Chen S, Zhang H, Zhang S, Dong D. Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study. JMIR Public Health Surveill. 2024 Aug;10:e57353. https://doi.org/10.2196/57353
Leśniowska J. Economic Burden of Rare Diseases With Common Diseases as a Comorbidity in Poland. European Management Studies. 2020;18(89):103–20. https://doi.org/10.7172/1644-9584.89.6
Kopciuch D, Zaprutko T, Paczkowska A, Nowakowska E. Costs of treatment of adult patients with cystic fibrosis in Poland and internationally. Public Health. 2017 Jul;148:49–55. https://doi.org/10.1016/j.puhe.2017.03.003
Lagae L, Irwin J, Gibson E, Battersby A. Caregiver impact and health service use in high and low severity Dravet syndrome: A multinational cohort study. Seizure. 2019 Feb;65:72–9. https://doi.org/10.1016/j.seizure.2018.12.018
Schreiber-Katz O, Klug C, Thiele S, Schorling E, Zowe J, Reilich P, et al. Comparative cost of illness analysis and assessment of health care burden of Duchenne and Becker muscular dystrophies in Germany. Orphanet J Rare Dis. 2014 Dec;9:210. https://doi.org/10.1186/s13023-014-0210-9
Jarvis J, Chertavian E, Buessing M, Renteria T, Tu L, Hoffer L, et al. The economic impact of caregiving for individuals with Angelman syndrome in the United States: results from a caregiver survey. Orphanet J Rare Dis. 2025 Feb;20(1):82. https://doi.org/10.1186/s13023-025-03551-4
Nabbout R, Dirani M, Teng T, Bianic F, Martin M, Holland R, et al. Impact of childhood Dravet syndrome on care givers of patients with DS, a major impact on mothers. Epilepsy Behav. 2020 Jul;108:107094. https://doi.org/10.1016/j.yebeh.2020.107094
Rodríguez-Santana I, Mestre T, Squitieri F, Willock R, Arnesen A, Clarke A, et al. Economic burden of Huntington disease in Europe and the USA: Results from the Huntington’s Disease Burden of Illness study. Eur J Neurol. 2023 Apr;30(4):1109–17. https://doi.org/10.1111/ene.15645
Howat-Rodrigues ABC, Laks J, Marinho V. Translation, cross-cultural adaptation, and psychometric properties of the Brazilian Portuguese version of the Consumer Financial Protection Bureau Financial Well-Being scale. Trends Psychiatry Psychother. 2021 Apr-Jun;43(2):134–40. https://doi.org/10.47626/2237-6089-2020-0034
Evans E, Jacobs M. Diabetes and Financial Well-Being: Differential Hardship Among Vulnerable Populations. Sci Diabetes Self Manag Care. 2024 Aug;50(4):263–74. https://doi.org/10.1177/26350106241256324
Jardaly M, Antoun J, Sakr R, Doumiati H, Shaarani I. Financial Literacy and Wellbeing Among Medical Students, Residents, and Attending Physicians in Lebanon: Results From a Nationwide Multi-Centered Survey. Inquiry. 2024 Jan-Dec;61:469580241294135. https://doi.org/10.1177/00469580241294135
Ellwood S, Weathers J, DeMello J, Graves L, Antoun J, Soares N. Personal Financial Well-being of Family Medicine Residents and Residency Curricula: A CERA Study. PRiMER. 2023 Jan;7:415901. https://doi.org/10.22454/PRiMER.2023.415901
Noronha V, Tongaonkar A, Pillai A, Rao AR, Kumar A, Sehgal A, et al. Prevalence and impact of financial toxicity in older patients with cancer: a prospective observational study in India. Support Care Cancer. 2025 Apr;33(5):416. https://doi.org/10.1007/s00520-025-09252-9
Dosemane D, Khadilkar MN, Kanthila J, Mithra PP. Quality of life and perceived financial implications among otorhinolaryngologists during the COVID-19 pandemic across India. Acta Otorhinolaryngol Ital. 2021 Aug;41(4):289–95. https://doi.org/10.14639/0392-100X-N1229
Huang CHO, Leung RHL, Sit KY, Tsui TYN, Wong JYH, Fung HW. The Financial Well-Being Scale: Reliability, Validity, and Clinical Correlates Among Childhood Trauma Survivors. Research on Social Work Practice. 2025;10497315241312889. https://doi.org/10.1177/10497315241312889
Kempson E, Poppe C. Understanding Financial Well-Being and Capability [Internet]. Høgskolen i Oslo og Akershus; 2018. https://oda.oslomet.no/oda-xmlui/handle/20.500.12199/5357
Downloads
Published
Issue
Section
License
Copyright (c) 2025 The copyright to the submitted manuscript is held by the Author, who grants the Journal of Medical Science (JMS) a nonexclusive licence to use, reproduce, and distribute the work, including for commercial purposes.

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

