Abstract
Background
Illness perceptions are the unique perspective individuals have on their illness, based on their context and experiences, and are associated with patient outcomes including coping and adherence. The purpose of this study was to explore characteristics that may be driving membership in illness perceptions cluster groups for adults with chronic kidney disease (CKD).
Methods
This study was conducted within the multicenter longitudinal Chronic Renal Insufficiency Cohort (CRIC) Study. Cross-sectional data were collected and combined with CRIC data. Illness perceptions were measured using the Revised Illness Perception Questionnaire. Clustering analysis was conducted in R, and bivariate analysis including linear regression was performed in STATA 16.
Results
The sample (n = 197) had a mean age of 68, was 52% women, 53% non-White, and mean estimated glomerular filtration rate (eGFR) 56 ml/min/1.73 m2. Three cluster groups were identified, labeled as “Disengaged” (n = 20), “Well-Resourced” (n = 108), and “Distressed” (n = 69). The “Disengaged” group was characterized by low CKD knowledge, many recent hospitalization days, and the lowest perceived CKD burden. The “Well-Resourced” group was characterized by the highest levels of education, CKD knowledge, optimism, and medication adherence. The “Distressed” group was characterized by the highest levels of depression scores, comorbidity burden, CKD burden, CKD symptoms, and lowest optimism. Group membership significantly predicted the number of hospitalization days in adjusted analyses.
Conclusions
Illness perceptions groups are associated with number of hospitalization days but are independent of many patient characteristics. Illness perceptions data could be used to tailor care for specific patients at risk for poor health outcomes.
Graphical Abstract
![](http://media.springernature.com/lw685/springer-static/image/art%3A10.1007%2Fs40620-024-01955-2/MediaObjects/40620_2024_1955_Figa_HTML.png)
![](http://media.springernature.com/m312/springer-static/image/art%3A10.1007%2Fs40620-024-01955-2/MediaObjects/40620_2024_1955_Fig1_HTML.png)
Similar content being viewed by others
References
United States Renal Data System. 2021 USRDS annual data report: epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD2021
Gunarathne T, Tang LY, Lim SK, Nanayakkara N, Damayanthi H, Abdullah KL (2022) Factors associated with symptom burden in adults with chronic kidney disease undergoing hemodialysis: a prospective study. Int J Environ Res Public Health. https://doi.org/10.3390/ijerph19095540
Engle RL, Mohr DC, Holmes SK, Seibert MN, Afable M, Leyson J et al (2019) Evidence-based practice and patient-centered care: doing both well. Health Care Manag Rev. https://doi.org/10.1097/HMR.0000000000000254
Grover S, Fitzpatrick A, Azim FT, Ariza-Vega P, Bellwood P, Burns J et al (2022) Defining and implementing patient-centered care: an umbrella review. Patient Educ Couns 105(7):1679–1688. https://doi.org/10.1016/j.pec.2021.11.004
Leventhal H, Nerenz DR, Steele DJ (1984) Illness representation and coping with health threats. In: Baum A, Taylor SE, Singer JE (eds) Social psychological aspects of health. L. Erlbaum Associates, Hillsdale, pp 219–252
Moss-Morris R, Weinman J, Petrie KJ, Horne R, Cameron LD, Buick D (2002) The Revised Illness Perception Questionnaire (IPQ-R). Psychol Health 17(1):1–16. https://doi.org/10.1080/08870440290001494
Nahlen Bose C, Elfstrom ML, Bjorling G, Persson H, Saboonchi F (2016) Patterns and the mediating role of avoidant coping style and illness perception on anxiety and depression in patients with chronic heart failure. Scand J Caring Sci 30(4):704–713. https://doi.org/10.1111/scs.12297
Muscat P, Weinman J, Farrugia E, Camilleri L, Chilcot J (2020) Illness perceptions predict mortality in patients with predialysis chronic kidney disease: a prospective observational study. BMC Nephrol 21(1):537. https://doi.org/10.1186/s12882-020-02189-7
Rivera E, Corte C, Steffen A, DeVon HA, Collins EG, McCabe P (2018) Illness representation and self-care ability in older adults with chronic disease. Geriatrics 3(3):45. https://doi.org/10.3390/geriatrics3030045
Denker M, Boyle S, Anderson AH, Appel LJ, Chen J, Fink JC et al (2015) Chronic Renal Insufficiency Cohort Study (CRIC): overview and summary of selected findings. Clin J Am Soc Nephrol 10(11):2073–2083. https://doi.org/10.2215/CJN.04260415
Teng EL, Chui HC (1987) The Modified Mini-Mental State (3MS) examination. J Clin Psychiatry 48(8):314–318
Rivera E, Levoy K, Clark-Cutaia MN, Schrauben S, Townsend RR, Rahman M et al (2022) Content Validity Assessment of the Revised Illness Perception Questionnaire in CKD using qualitative methods. Int J Environ Res Public Health. https://doi.org/10.3390/ijerph19148654
Rivera E, Clark-Cutaia MN, Schrauben SJ, Townsend RR, Lash JP, Hannan M et al (2022) Treatment adherence in CKD and support from health care providers: a qualitative study. Kidney Med. https://doi.org/10.1016/j.xkme.2022.100545
Devins GM, Binik YM, Mandin H, Letourneau PK, Hollomby DJ, Barre PE et al (1990) The Kidney Disease Questionnaire: a test for measuring patient knowledge about end-stage renal disease. J Clin Epidemiol 43(3):297–307
Scheier MF, Carver CS, Bridges MW (1994) Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the Life Orientation Test. J Pers Soc Psychol 67(6):1063–1078
Cedillo-Couvert EA, Ricardo AC, Chen J, Cohan J, Fischer MJ, Krousel-Wood M et al (2018) Self-reported medication adherence and CKD progression. Kidney Int Rep 3(3):645–651. https://doi.org/10.1016/j.ekir.2018.01.007
Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J (1961) An inventory for measuring depression. Arch Gen Psychiatry 4:561–571. https://doi.org/10.1001/archpsyc.1961.01710120031004
Charlson ME, Pompei P, Ales KL, MacKenzie CR (1987) A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 40(5):373–383. https://doi.org/10.1016/0021-9681(87)90171-8
Hays RD et al (1997) Kidney Disease Quality of Life Short Form (KDQOL-SF™), version 1.3: a manual for use and scoring
Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J (1999) Development of a brief test to measure functional health literacy. Patient Educ Couns 38(1):33–42
Scrucca L, Fop M, Murphy TB, Raftery AE (2016) mclust 5: clustering, classification and density estimation using Gaussian finite mixture models. R J 8(1):289–317. https://doi.org/10.32614/RJ-2016-021
Li J, Qiu X, Yang X, Zhou J, Zhu X, Zhao E et al (2020) Relationship between illness perception and depressive symptoms among type 2 diabetes mellitus patients in China: a mediating role of coping style. J Diabetes Res 2020:3142495. https://doi.org/10.1155/2020/3142495
Baiardini I, Rogliani P, Santus P, Corsico AG, Contoli M, Scichilone N et al (2019) Disease awareness in patients with COPD: measurement and extent. Int J Chron Obstruct Pulmon Dis 14:1–11. https://doi.org/10.2147/COPD.S179784
Hurt CS, Burn DJ, Hindle J, Samuel M, Wilson K, Brown RG (2014) Thinking positively about chronic illness: an exploration of optimism, illness perceptions and well-being in patients with Parkinson’s disease. Br J Health Psychol 19(2):363–379. https://doi.org/10.1111/bjhp.12043
Meuleman Y, Chilcot J, Dekker FW, Halbesma N, van Dijk S (2017) Health-related quality of life trajectories during predialysis care and associated illness perceptions. Health Psychol 36(11):1083–1091. https://doi.org/10.1037/hea0000504
Wang Y, Veltkamp DMJ, van der Boog PJM, Hemmelder MH, Dekker FW, de Vries APJ et al (2022) Illness perceptions and medication nonadherence to immunosuppressants after successful kidney transplantation: a cross-sectional study. Transpl Int 35:10073. https://doi.org/10.3389/ti.2022.10073
Massey EK, Tielen M, Laging M, Timman R, Beck DK, Khemai R et al (2015) Discrepancies between beliefs and behavior: a prospective study into immunosuppressive medication adherence after kidney transplantation. Transplantation 99(2):375–380. https://doi.org/10.1097/TP.0000000000000608
Nah R, Robertson N, Niyi-Odumosu FA, Clarke AL, Bishop NC, Smith AC (2019) Relationships between illness representations, physical activity and depression in chronic kidney disease. J Ren Care 45(2):74–82. https://doi.org/10.1111/jorc.12274
Tsai YC, Chiu YW, Hung CC, Hwang SJ, Tsai JC, Wang SL et al (2012) Association of symptoms of depression with progression of CKD. Am J Kidney Dis 60(1):54–61. https://doi.org/10.1053/j.ajkd.2012.02.325
Plantinga LC, Tuot DS, Powe NR (2010) Awareness of chronic kidney disease among patients and providers. Adv Chronic Kidney Dis 17(3):225–236. https://doi.org/10.1053/j.ackd.2010.03.002
Funding
This research was funded by the National Institutes of Health (Grant numbers P30AG059302, T32NR009356, K24-DK092290).
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors have no competing interests to disclose. This dataset is available to be shared upon request, please contact the corresponding author.
Ethical approval
This study was conducted in accordance with the standards as laid down in the 1964 Declaration of Helsinki and its later amendments. All study participants gave informed consent to participate and for aggregate, deidentified results to be disseminated.
Human and animal rights
This study involving human subjects was approved by the University of Pennsylvania Institutional Review Board (IRB), approval #833179.
Informed consent
All study participants gave informed consent to participate and for aggregate, deidentified results to be disseminated.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Rivera, E., Tintle, N., Townsend, R.R. et al. Characterization of CKD illness representation profiles using patient-level factors. J Nephrol 37, 671–679 (2024). https://doi.org/10.1007/s40620-024-01955-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40620-024-01955-2