Skip to main content
SpringerLink
Log in

Initial Validation of IBD KNOW-IT: Measuring Patient and Caregiver Knowledge of a Child’s Disease and Treatment Regimen

  • Published:
Journal of Clinical Psychology in Medical Settings Aims and scope Submit manuscript

Abstract

The present study describes the development and initial validation of a newly developed measure of child and caregiver knowledge of the child’s own IBD and treatment, called IBD KNOW-IT. One hundred and fifty-five children and their caregivers completed the IBD KNOW-IT as well as a scale designed to compare each dyad’s perceived knowledge to their actual knowledge. Initial psychometric evaluation of IBD KNOW-IT was completed by conducting factor analysis and determining internal consistency, convergent validity, and associations with demographic and medical characteristics. Results supported the validity of a 12-item measure with 4 subscales including Symptoms, Medication Regimen, Disease Monitoring, and Medical Team. Support for the internal consistency of IBD KNOW-IT was obtained. Evidence of validity was demonstrated by significant correlations between child and caregiver scales, and high congruence between perceived and actual knowledge across all subscales. The reliability of the measure was demonstrated by good internal consistency and test–retest reliability. Preliminary psychometric evaluation suggests that IBD KNOW-IT is reliable and valid.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Abraham, B. P., & Kahn, S. A. (2014). Transition of care in inflammatory bowel disease. Gastroenterology and Hepatology, 10, 633–640.

    PubMed  Google Scholar 

  • Benchimol, E. I., Walters, T. D., Kaufman, M., Frost, K., Fiedler, K., Chinea, Z., & Zachos, M. (2011). Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool. Inflammatory Bowel Diseases, 17, 1131–1137. https://doi.org/10.1002/ibd.21464.

    Article  PubMed  Google Scholar 

  • Crandall, W. V., Margolis, P. A., Kappelman, M. D., King, E. C., Pratt, J. M., Boyle, B. M., …, ImproveCareNow, C. (2012). Improved outcomes in a quality improvement collaborative for pediatric inflammatory bowel disease. Pediatrics, 129, e1030–e1041. https://doi.org/10.1542/peds.2011-1700.

  • Fishman, L. N., Houtman, D., van Groningen, J., Arnold, J., & Ziniel, S. (2011). Medication knowledge: An initial step in self-management for youth with inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 53, 641–645. https://doi.org/10.1097/MPG.0b013e3182285316.

    Article  PubMed  Google Scholar 

  • Gray, W. N., Holbrook, E., Morgan, P. J., Saeed, S. A., Denson, L. A., & Hommel, K. A. (2015). Transition readiness skills acquisition in adolescents and young adults with inflammatory bowel disease: Findings from integrating assessment into clinical practice. Inflammatory Bowel Diseases, 21, 1125–1131. https://doi.org/10.1097/MIB.0000000000000352.

    Article  PubMed  Google Scholar 

  • Greenley, R. N., Doughty, A., Stephens, M., & Kugathasan, S. (2010). Brief report: Development of the inflammatory bowel disease family responsibility questionnaire. Journal of Pediatric Psychology, 35, 183–187. https://doi.org/10.1093/jpepsy/jsp052.

    Article  PubMed  Google Scholar 

  • Greenley, R. N., Stephens, K. A., Nguyen, E. U., Kunz, J. H., Janas, L., Goday, P., & Schurman, J. V. (2013). Vitamin and mineral supplement adherence in pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 38, 883–892. https://doi.org/10.1093/jpepsy/jst037.

    Article  PubMed  Google Scholar 

  • Gudas, L. J., Koocher, G. P., & Wypij, D. (1991). Perceptions of medical compliance in children and adolescents with cystic fibrosis. Journal of Developmental and Behavioral Pediatrics, 12, 236–242.

    Article  CAS  Google Scholar 

  • Gumidyala, A. P., Greenley, R. N., Plevinsky, J. M., Poulopoulos, N., Cabrera, J., Lerner, D., …, Kahn, S. A. (2018). Moving on: Transition readiness in adolescents and young adults with IBD. Inflammatory Bowel Disease, 24, 482–489. https://doi.org/10.1093/ibd/izx051.

  • Haaland, D., Day, A. S., & Otley, A. (2014). Development and validation of a pediatric IBD knowledge inventory device: The IBD-KID. Journal of Pediatric Gastroenterology and Nutrition, 58, 313–319. https://doi.org/10.1097/MPG.0000000000000210.

    Article  PubMed  Google Scholar 

  • Hait, E. J., Barendse, R. M., Arnold, J. H., Valim, C., Sands, B. E., Korzenik, J. R., & Fishman, L. N. (2009). Transition of adolescents with inflammatory bowel disease from pediatric to adult care: A survey of adult gastroenterologists. Journal of Pediatric Gastroenterology and Nutrition, 48, 61–65. https://doi.org/10.1097/MPG.0b013e31816d71d8.

    Article  PubMed  Google Scholar 

  • Holmes, C. S., Chen, R., Streisand, R., Marschall, D. E., Souter, S., Swift, E. E., & Peterson, C. C. (2006). Predictors of youth diabetes care behaviors and metabolic control: A structural equation modeling approach. Journal of Pediatric Psychology, 31, 770–784. https://doi.org/10.1093/jpepsy/jsj083.

    Article  PubMed  Google Scholar 

  • Hommel, K. A., Davis, C. M., & Baldassano, R. N. (2008). Medication adherence and quality of life in pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 33, 867–874. https://doi.org/10.1093/jpepsy/jsn022.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hommel, K. A., Davis, C. M., & Baldassano, R. N. (2009). Objective versus subjective assessment of oral medication adherence in pediatric inflammatory bowel disease. Inflammatory Bowel Disease, 15, 589–593. https://doi.org/10.1002/ibd.20798.

    Article  Google Scholar 

  • Hommel, K. A., Greenley, R. N., Maddux, M. H., Gray, W. N., & Mackner, L. M. (2013). Self-management in pediatric inflammatory bowel disease: A clinical report of the North American society for pediatric gastroenterology, hepatology, and nutrition. Journal of Pediatric Gastroenterology and Nutrition, 57, 250–257. https://doi.org/10.1097/MPG.0b013e3182999b21.

    Article  PubMed  PubMed Central  Google Scholar 

  • Hommel, K. A., Herzer, M., Ingerski, L., Hente, E., & Denson, L. (2012). Individually-tailored treatment of medication nonadherence: A pilot study. Journal of Pediatric Gastroenterology and Nutrition, 53, 435–439. https://doi.org/10.1097/MPG.0b013e3182203a91.

    Article  Google Scholar 

  • Ievers, C. E., Brown, R. T., Drotar, D., Caplan, D., Pishevar, B. S., & Lambert, R. G. (1999). Knowledge of physician prescriptions and adherence to treatment among children with cystic fibrosis and their mothers. Journal of Developmental and Behavioral Pediatrics, 20, 335–343.

    Article  CAS  Google Scholar 

  • Ievers, C. E., & Drotar, D. (2000). Parental and child knowledge of the treatment regimen for childhood chronic illness: Related factors and adherence to treatment. In D. Drotar (Ed.), Promoting adherence to medical treatment in chronic childhood illness: Concepts, methods, and interventions (pp. 259–282). Mahwah, NJ: Lawrence Erlbaum Associates.

    Google Scholar 

  • Jensen, S. A., Elkin, T. D., Hilker, K., Jordan, S., Iyer, R., & Smith, M. G. (2005). Caregiver knowledge and adherence in children with sickle cell disease: Knowing is not doing. Journal of Clinical Psychology in Medical Settings, 12, 333–337. https://doi.org/10.1007/s10880-005-7819-8.

    Article  Google Scholar 

  • Kappelman, M. D., Crandall, W. V., Colletti, R. B., Goudie, A., Leibowitz, I. H., Duffy, L., …, Margolis, P. (2011). Short pediatric Crohn’s disease activity index for quality improvement and observational research. Inflammatory Bowel Disease, 17, 112–117. https://doi.org/10.1002/ibd.21452.

  • LaGreca, A. M., & Bearman, K. J. (2003). Adherence to prescribed medical regimens. In M. C. Roberts (Ed.), Handbook of pediatric psychology (3rd ed., pp. 119–140). New York: Guilford.

    Google Scholar 

  • Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174.

    Article  CAS  Google Scholar 

  • Long, M. D., Crandall, W. V., Leibowitz, I. H., Duffy, L., del Rosario, F., Kim, S. C., …, ImproveCareNow Collaborative for Pediatric, I. B. D. (2011). Prevalence and epidemiology of overweight and obesity in children with inflammatory bowel disease. Inflammatory Bowel Disease, 17, 2162–2168. https://doi.org/10.1002/ibd.21585.

  • Mackner, L., & Crandall, W. (2005). Oral medication adherence in pediatric inflammatory bowel disease. Inflammatory Bowel Disease, 11, 1006–1012.

    Article  Google Scholar 

  • Markowitz, J., Grancher, K., Kohn, N., Lesser, M., & Daum, F. (2000). A multicenter trial of 6-mercaptopurine and prednisone in children with newly diagnosed Crohn’s disease. Gastroenterology, 119, 895–902. https://doi.org/10.1053/gast.2000.18144.

    Article  PubMed  CAS  Google Scholar 

  • Miles, C., Arden-Close, E., Thomas, M., Bruton, A., Yardley, L., Hankins, M., & Kirby, S. E. (2017). Barriers and facilitators of effective self-management in asthma: Systematic review and thematic synthesis of patient and healthcare professional views. NPJ Primary Care Respiratory Medicine, 27, 57. https://doi.org/10.1038/s41533-017-0056-4.

    Article  PubMed  PubMed Central  Google Scholar 

  • Oliva-Hemker, M. M., Abadom, V., Cuffari, C., & Thompson, R. E. (2007). Nonadherence with thiopurine immunomodulator and mesalamine medications in children with Crohn disease. Journal of Pediatric Gastroenterology and Nutrition, 44, 180–184. https://doi.org/10.1097/MPG.0b013e31802b320e.

    Article  PubMed  CAS  Google Scholar 

  • Trivedi, I., & Keefer, L. (2015). The emerging adult with inflammatory bowel disease: Challenges and recommendations for the adult gastroenterologist. Gastroenterology Research and Practice, 2015, 260807. https://doi.org/10.1155/2015/260807.

    Article  PubMed  PubMed Central  Google Scholar 

  • Turner, D., Hyams, J., Markowitz, J., Lerer, T., Mack, D. R., Evans, J., & Griffiths, A. M. (2009). Appraisal of the pediatric ulcerative colitis activity index (PUCAI). Inflammatory Bowel Disease, 15, 1218–1223. https://doi.org/10.1002/ibd.20867.

    Article  Google Scholar 

  • Wysocki, T., Lochrie, A., Antal, H., & Buckloh, L. M. (2011). Youth and parent knowledge and communication about major complications of type 1 diabetes: Associations with diabetes outcomes. Diabetes Care, 34, 1701–1705. https://doi.org/10.2337/dc11-0577.

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Funding

There are no funding sources to declare.

Author information

Authors and Affiliations

  1. Division of Developmental & Behavioral Sciences/Division of Gastroenterology, Children’s Mercy-Kansas City, 2401 Gillham Road, Kansas City, MO, 64108, USA

    Michele Maddux

  2. Division of Gastroenterology, Children’s Mercy-Kansas City, Kansas City, MO, USA

    Michele Maddux, Allison Gordy, Corey Schurman & Trevor Cole

  3. Division of Health Services and Outcomes Research, Children’s Mercy-Kansas City, Kansas City, MO, USA

    Vincent Staggs

Authors
  1. Michele Maddux
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Allison Gordy
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Corey Schurman
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Trevor Cole
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Vincent Staggs
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Michele Maddux.

Ethics declarations

Conflict of interest

Michele Maddux, Allison Gordy, Corey Schurman, Trevor Cole and Vincent Staggs declares that they have no conflict of interest.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Ethical Approval

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.

Research Involved in Human and Animal Rights

This article does not contain any studies with animals performed by any of the authors.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Maddux, M., Gordy, A., Schurman, C. et al. Initial Validation of IBD KNOW-IT: Measuring Patient and Caregiver Knowledge of a Child’s Disease and Treatment Regimen. J Clin Psychol Med Settings 27, 480–489 (2020). https://doi.org/10.1007/s10880-019-09636-0

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10880-019-09636-0

Keywords

Search

Navigation