Examining Uncertainty in Illness in Parents and Children With Chronic Kidney Disease and Systemic Lupus Erythematosus: A Mediational Model of Internalizing Symptoms and Health-Related Quality of Life
To examine if parent illness uncertainty is indirectly associated with child depression, anxiety, and HRQOL in the CKD/SLE population. Parent–child dyads (N = 31) from outpatient rheumatology and nephrology clinics included children (ages 9–18) diagnosed with CKD (Stage 1, 2, or nephrotic syndrome) or SLE. Parents completed demographic and uncertainty measures and children completed uncertainty, depression, anxiety, and HRQOL measures. This cross-sectional study examined mediational models using the percentile bootstrapping method. Parent uncertainty had an indirect effect on child depression, anxiety, and HRQOL through the mediator, child uncertainty. In other words, parents’ illness uncertainty regarding their child’s condition correlates to the child’s illness uncertainty, which then is associated with the child’s mental health and wellbeing. Reverse mediations illustrated that parent uncertainty did not mediate child uncertainty and outcome variables. Results extend previous research by examining parent and child illness uncertainty in understudied conditions (CKD/SLE) and the relationship to outcome variables commonly related to depression (e.g., anxiety and HRQOL). Findings allow health psychologists and medical personnel to understand the impact of uncertainty on the child’s wellbeing and HRQOL. Clinical implications, including using specialized interventions to address illness uncertainty, are discussed.
KeywordsChronic illness Depression Anxiety Health-related quality of life Uncertainty in illness
Compliance with Ethical Standards
Conflict of interest
Jennifer L. Petrongolo, Nataliya Zelikovsky, Rachel M. Keegan, Susan L. Furth, and Andrea Knight declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent and/or child assent was obtained from all individual participants included in this study.
- Al-Yateem, N., Docherty, C., Altawil, H., Al-Tamimi, M., & Ahmad, A. (2017). The quality of information received by parents of children with chronic ill health attending hospitals indicated by measures of illness uncertainty. Scandinavian Journal of Caring Sciences, 31, 839–849. https://doi.org/10.1111/scs.12405.CrossRefGoogle Scholar
- American College of Rheumatology. (2012). Systemic lupus erythematosus in children and teens. Retrieved from https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Systemic_Lupus_Erythematosus_in_Children_and_Teens/.
- American Kidney Fund. (2015). Nephrotic syndrome in children. Rockville, MD. Retrieved from http://www.kidneyfund.org/kidney-problems/nephrotic-syndrome/nephrotic-syndrome-in-children/.
- Bailey, D. E. Jr., Landerman, L., Barroso, J., Bixby, P., Mishel, M., Muir, A., …, Clipp, E. (2009). Uncertanity, sypmptoms, and quality of life in persons with chronic hepatitis C. Psychosomatics, 50(2), 138–146.Google Scholar
- Barberis, N., Costa, S., Gitto, L., Larcan, R., Buemi, M., & Santoro. D. (2016). Role of emotional intelligence as a mediating factor between uncertainty and anxiety hospital in chronic renal patients. Illness, Crisis, & Loss, 0, 1–16.Google Scholar
- Brunner, H. I., Bishnoi, A., Barron, A. C, Houk, L. J., Ware, A., Farhey, Y., …, Passo, M. H. (2006). Disease outcomes and ovarian function of childhood-onset systemic lupus erythematosus. Lupus, 15(4). 198–206.Google Scholar
- Calderon-Margalit, R., Golan, E., Twig, G., Leiba, A., Tzur, D., Afek, A., …, Vivante, A. (2018). History of childhood kidney disease and risk of adult end-stage renal disease. New England Journal of Medicine, 378(5), 428–438.Google Scholar
- Center for Disease Control and Prevention. (2016). Health-related quality of life (HRQOL). Retrieved from https://www.cdc.gov/hrqol/.
- Centers for Disease Control and Prevention. (2017). National chronic kidney disease fact sheet, 2017. Atlanta, GA: US Department of Health and Human Services, Centers for Disease Control and Prevention.Google Scholar
- Gerson, A. C., Wentz, A., Abraham, A. G., Mendley, S. R., Hooper, S. R., Butler, R. W., …, Furth, S. L. (2010). Health-related quality of life children with mild to moderate chronic kidney disease. Pediatrics, 125(2), e349.Google Scholar
- Gipson, D. S., Selewski D. T., Massengill, S. F., Wickman, L., Messer, K. L., Herreshoff, E., …, DeWalt, D. A. (2013). Gaining the PROMIS perspective from children with nephrotic syndrome: A Midwest pediatric nephrology consortium study. Health and Quality of Life Outcomes, 30(11), 2–9.Google Scholar
- Ha Dinh, T. T., Bonner, A., Clark, R., Ramsbotham, J., & Hines, S. (2016). The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: A systematic review. JBI Database of Systematic Reviews and Implementation Reports, 14, 210–247.CrossRefGoogle Scholar
- Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomed Information, 42, 377–381.CrossRefGoogle Scholar
- Hayes, A. (2012). PROCESS: A versatile computational tool for observed variable mediation, moderation, and conditional process modeling [Statistical program]. Retrieved from http://www.afhayes.com/public/process2012.pdf.
- Hayes, A. (2013). Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Press.Google Scholar
- Heath, J., MacKinlay, D., Watson, A.R., Hames, A., Wirz, L., Scott, S., …, McHugh, K. (2010). Self-reported quality of life in children and young people with chronic kidney disease. Pediatric Nephrology, 26(5). 767–773. https://doi.org/10.1007/s00467-011-1784.
- Irwin, D. E., Stucky, B., Langer, M. M., Thissen, D., DeWitt, E. M., Lai, L., …, DeWalt, D. A. (2010). An item response analysis of the pediatric PROMIS anxiety and depression symptoms scales. Quality of LIfe Research. 19, 595–607.Google Scholar
- Kelly, M. M. (2016). Exploring the evidence: Children and adolescents with chronic kidney disease: A population at risk for more than just kidney disease. Nephrology Nursing Journal, 43, 67–70.Google Scholar
- Kilis-Pstrusiriska, K., Medyriska, A., Chmielewska, I. B., Grenda, R., Kluska-Jozwiak, A., Leszczynska, B., Niedomagata, J., …, Zwoliriska, D. (2013). Perception of health-related quality of life in children with chronic kidney disease by the patients and their caregivers: Multicentre national study results. Quality of Life Research, 22, 2989–2897.Google Scholar
- Knight, A., Weiss, P., Morales, K., Gerdes, M., Gutstein, A., Vickery, M., & Keren, R. (2014). Depression and anxiety and their association with healthcare utilization in pediatric lupus and mixed connective tissue disease patients: A cross-sectional study. Pediatric Rheumatology, 12, 42.CrossRefGoogle Scholar
- Krull, J. L., Cheong, J., Frtiz, M. S., & Mackinnon, D. P. (2015). Moderation and mediation in interindividual longitudinal analysis. In D. Cicchetti (Ed.), Developmental psychopathology, theory, and method (3rd ed., pp. 922–1144). Hoboken, NJ: Wiley.Google Scholar
- Maikranz, J. M., Steele, R. G., Dreyer, M. L., Stratman, A. C., & Bovaird, J. A. (2006). The relationship of hope and illness-related uncertainty to emotional adjustment and adherence among pediatric renal and liver transplant recipients. Journal of Pediatric Psychology, 32, 571–581.CrossRefGoogle Scholar
- Marciano, R. C., Bouissou Soares, C. M., Diniz, J. S. S., Lima, E. M., Silva, J. M. P., Canhestro, M. R., …, Oliveira, E. A. (2011). Behavioral disorders and low quality of life in children and adolescents with chronic kidney disease. Pediatric Nephrology, 26(2), 281–290.Google Scholar
- Marsolo, K., Shuman, K., Nix, J., Morrison, C., Mullins, L. L., & Pai, A. L. H. (2017). Reducing parental uncertainty around childhood cancer: Implementation decisions and design trade-offs in developing an electronic health record-linked mobile app. JMIR Publications, 6, e122. https://doi.org/10.2196/resprot.7523.Google Scholar
- Mishel, M. H. (1990). Reconceptualization of the uncertainty in illness theory. State of the Science, 22, 256–262.Google Scholar
- Mullins, L. L., Molzon, E., Suorsa, K. L., Tackett, A. P., Pai, A. L. H., & Chaney, J. A. (2015). Models of resilience: Developing psychosocial interventions for parents of children with chronic health conditions. Family Relations: Interdisciplinary Journal of Applied Family Studies, 64, 176–189.CrossRefGoogle Scholar
- National Kidney Foundation (2017a). About Chronic Kidney Disease. Retrieved from https://www.kidney.org/kidneydisease/aboutckd.
- National Kidney Foundation. (2017b). Nephrotic Syndrome. Retrieved from https://www.kidney.org/atoz/content/nephrotic.
- Page, M. C., Fedele, D. A., Pai, A. L. H., Anderson, J., Wolfe-Christensen, C., Ryan, J. L., & Mullins, L. L. (2012). The relationship of maternal and child Illness uncertainty to child depressive symptomotology: A mediational model. Journal of Pediatric Psychology, 37, 97–105.CrossRefGoogle Scholar
- Parker, A. P., Davis, W. J., Latini, D. M., Baum, G., Wang, X., Ward, J. F., …, Kim, J. (2015). Relationship between illness uncertainty, anxiety, fear of progression, and quality of life in men with favourable-risk prostate cancer undergoing active surveillance. Urological Oncology, 117. 469–477.Google Scholar
- Paz, Z., & Watcher, S. (2017). Systemic lupus erythematosus (Juvenile). The American College of Rheumatology. Retrieved from http://www.rheumatology.org/Practice/Clinical/Patients/Disease_And_Conditions/Systemic_Lupus_Erythematosus_in_Children_and_Teens.
- PROMIS. (2014). PROMIS pediatric profile instruments. Retrieved from https://www.assessmentcenter.net/Manuals.aspx.
- Sharkey, C., Bakula, D. M., Baraldi, A. N., Perez, M. N., Suorsa, K. I., Chaney, J. M., & Mullins, L. L. (2017). Grit, illness-related distress, and psychosocial outcomes in college students with a chronic medical condition: A path analysis. Journal of Pediatric Psychology, 23, 552–560.Google Scholar
- The Renal Association. (2018). Identifying patients with CKD stages G1 & G2. Retrieved from https://renal.org/information-resources/the-uk-eckd-guide/stages-1-2-ckd/.
- Tucker, L. B., Uribe, A. G., Fernandez, M., Vila, L. M., McGwin, G., Apte, M., & Alarcón, G. S. (2008). Adolescent onset of lupus results in more aggressive disease and worse outcomes: Results of a nested matched case-control study within LUMINA, a multiethnic US cohort (LUMINA LVII). Lupus, 17, 314–322.CrossRefGoogle Scholar
- Tunnicliffe, D., Singh-Grewal, D., Chaitow, J., Mackie, F., Manolios, N., Lin, M., …, Tong, A. (2016). Lupus means sacrifices: Perspectives of adolescents and young adults with Systemic Lupus Erythematosus. Arthritis Care and Research, 68(6), 828–837. https://doi.org/10.1002/acr.22749.
- Varni, J. W., Magnus, B., Stucky, B. D., Liu, Y., Quin, H., Thissen, D., …, DeWalt, D. A. (2014). Psychometric properties of the PROMIS® pediatric scales: Precision, stability, and comparison of different scoring and administration options. Quality of Life Research, 23, 1233–1243. https://doi.org/10.1007/s11136-013-0544-0.
- White, M. M., Chaney, J. M., Mullins, L. L., Wagner, J. L., Hommel, K. A., Andrews, N. R., & Jarvis, J. N. (2005). Children’s perceived illness uncertainty as a moderator in the parent-child distress relation in juvenile rheumatic diseases. Rehabilitation Psychology, 50(3), 224–231.CrossRefGoogle Scholar
- Zelko, F., Beebe, D., Baker, A., Nelson, S. M., Ali, A., Cedeno, A., …, Brunner, H. I. (2012). Academic outcomes in childhood-onset systemic lupus erythematosus. Arthritis Care & Research, 64, 1167–1174.Google Scholar