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Health literacy assessment in adults with neurofibromatosis: electronic and short-form measurement using FCCHL and Health LiTT

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Abstract

Determining health literacy level is an important prerequisite for effective patient education. We assessed multiple dimensions of health literacy and sociodemographic predictors of health literacy in patients with neurofibromatosis. In 86 individuals with a confirmed diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis, we assessed health literacy status using two HL tools—the adapted functional, communicative, and critical health literacy scale (adapted FCCHL) and health literacy assessment using talking touchscreen technology (Health LiTT). Factor analyses of the adapted FCCHL in NF patients showed factor structure and psychometric properties similar to pilot work in other patient populations. As a group, patients with NF had moderate scores on the Health LiTT and moderate to high scores on the adapted FCCHL, with the highest score on the functional health literacy subscale. Patients with NF1, those with lower education and those with learning disabilities had lower scores on Health LiTT; in multivariate analysis, learning disability and education remained significant predictors of HealthLiTT scores. Only lower education was associated with lower adapted FCCHL scores. Results suggest utilizing health literacy tools in NF patients is feasible and could provide physicians with valuable information to tailor health communication to subpopulations with lower health literacy levels.

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References

  1. Insitute of Medicine (2004) What is health literacy. In: Nielsen-Bohlman L, Panzer AM, Kindig DA (eds) Health literacy: a prescription to end confusion. Washington, DC. https://doi.org/10.17226/10883

  2. Services USDoHaH (2000) Healthy people 2010: understanding and improving health, vol chapter 11. Government Printing Office, Washington, DC

  3. Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J (2002) Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. Am J Public Health 92(8):1278–1283

    Article  PubMed  PubMed Central  Google Scholar 

  4. Schillinger D, Bindman A, Wang F, Stewart A, Piette J (2004) Functional health literacy and the quality of physician-patient communication among diabetes patients. Patient Educ Couns 52(3):315–323. https://doi.org/10.1016/S0738-3991(03)00107-1

    Article  PubMed  Google Scholar 

  5. Howard DH, Gazmararian J, Parker RM (2005) The impact of low health literacy on the medical costs of Medicare managed care enrollees. Am J Med 118(4):371–377. https://doi.org/10.1016/j.amjmed.2005.01.010

    Article  PubMed  Google Scholar 

  6. Baker DW (2006) The meaning and the measure of health literacy. J Gen Intern Med 21(8):878–883. https://doi.org/10.1111/j.1525-1497.2006.00540.x

    Article  PubMed  PubMed Central  Google Scholar 

  7. Dewalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP (2004) Literacy and health outcomes: a systematic review of the literature. J Gen Intern Med 19(12):1228–1239. https://doi.org/10.1111/j.1525-1497.2004.40153.x

    Article  PubMed  PubMed Central  Google Scholar 

  8. Merriman B, Ades T, Seffrin JR (2002) Health literacy in the information age: communicating cancer information to patients and families. CA Cancer J Clin 52(3):130–133

    Article  PubMed  Google Scholar 

  9. Nutbeam D (2000) Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int 15:259–267

    Article  Google Scholar 

  10. Ishikawa H, Takeuchi T, Yano E (2008) Measuring functional, communicative, and critical health literacy among diabetic patients. Diabetes Care 31(5):874–879. https://doi.org/10.2337/dc07-1932

    Article  PubMed  Google Scholar 

  11. Suka M, Odajima T, Kasai M, Igarashi A, Ishikawa H, Kusama M, Nakayama T, Sumitani M, Sugimori H (2013) The 14-item health literacy scale for Japanese adults (HLS-14). Environ Health Prev Med 18(5):407–415. https://doi.org/10.1007/s12199-013-0340-z

    Article  PubMed  PubMed Central  Google Scholar 

  12. Heijmans M, Waverijn G, Rademakers J, van der Vaart R, Rijken M (2015) Functional, communicative and critical health literacy of chronic disease patients and their importance for self-management. Patient Educ Couns 98(1):41–48. https://doi.org/10.1016/j.pec.2014.10.006

    Article  PubMed  Google Scholar 

  13. Yost KJ, Webster K, Baker DW, Choi SW, Bode RK, Hahn EA (2009) Bilingual health literacy assessment using the Talking Touchscreen/la Pantalla Parlanchina: Development and pilot testing. Patient Educ Couns 75(3):295–301. https://doi.org/10.1016/j.pec.2009.02.020

    Article  PubMed  PubMed Central  Google Scholar 

  14. Riklin E, Talaei-Kheoi M, Merker VL, Sheridan MR, Jordan JT, Plotkin SR, Vranceanu AM (2017) First report of factors associated with satisfaction in patients with neurofibromatosis. Am J Med Genet A 173(3):671–677. https://doi.org/10.1002/ajmg.a.38079

    Article  PubMed  Google Scholar 

  15. Acosta MT, Gioia GA, Silva AJ (2006) Neurofibromatosis type 1: new insights into neurocognitive issues. Curr Neurol Neurosci Rep 6(2):136–143

    Article  CAS  PubMed  Google Scholar 

  16. Ferner RE, Hughes RA, Weinman J (1996) Intellectual impairment in neurofibromatosis 1. J Neurol Sci 138(1–2):125–133

    Article  CAS  PubMed  Google Scholar 

  17. Pride NA, Crawford H, Payne JM, North KN (2013) Social functioning in adults with neurofibromatosis type 1. Res Dev Disabil 34(10):3393–3399. https://doi.org/10.1016/j.ridd.2013.07.011

    Article  PubMed  Google Scholar 

  18. Neary WJ, Hillier VF, Flute T, Stephens D, Ramsden RT, Evans DG (2010) Use of a closed set questionnaire to measure primary and secondary effects of neurofibromatosis type 2. J Laryngol Otol 124(7):720–728. https://doi.org/10.1017/S0022215110000460

    Article  CAS  PubMed  Google Scholar 

  19. Talaei-Khoei M, Riklin E, Merker VL, Sheridan MR, Jordan JT, Plotkin SR, Vranceanu AM (2017) First use of patient reported outcomes measurement information system (PROMIS) measures in adults with neurofibromatosis. J Neurooncol 131(2):413–419. https://doi.org/10.1007/s11060-016-2314-7

    Article  PubMed  Google Scholar 

  20. Yost KJ, Webster K, Baker DW, Jacobs EA, Anderson A, Hahn EA (2010) Acceptability of the talking touchscreen for health literacy assessment. J Health Commun 15(Suppl 2):80–92. https://doi.org/10.1080/10810730.2010.500713

    Article  PubMed  PubMed Central  Google Scholar 

  21. Hahn EA, Choi SW, Griffith JW, Yost KJ, Baker DW (2011) Health literacy assessment using talking touchscreen technology (Health LiTT): a new item response theory-based measure of health literacy. J Health Commun 16(Suppl 3):150–162. https://doi.org/10.1080/10810730.2011.605434

    Article  PubMed  PubMed Central  Google Scholar 

  22. Hair JF, Black WC, Babin BJ, Anderson RE (2013) Multivariate data analysis. Pearson Education Limited, New York

    Google Scholar 

  23. Bennett IM, Chen J, Soroui JS, White S (2009) The contribution of health literacy to disparities in self-rated health status and preventive health behaviors in older adults. Ann Fam Med 7(3):204–211. https://doi.org/10.1370/afm.940

    Article  PubMed  PubMed Central  Google Scholar 

  24. Ishikawa H, Yano E (2008) Patient health literacy and participation in the health-care process. Health Expect 11(2):113–122. https://doi.org/10.1111/j.1369-7625.2008.00497.x

    Article  PubMed  PubMed Central  Google Scholar 

  25. Yost KJ, DeWalt DA, Lindquist LA, Hahn EA (2013) The association between health literacy and indicators of cognitive impairment in a diverse sample of primary care patients. Patient Educ Couns 93(2):319–326. https://doi.org/10.1016/j.pec.2013.07.006

    Article  PubMed  PubMed Central  Google Scholar 

  26. Lea DH, Kaphingst KA, Bowen D, Lipkus I, Hadley DW (2011) Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics 14(4–5):279–289

    Article  CAS  PubMed  Google Scholar 

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Acknowledgements

Vanessa Merker is supported by the Program in Cancer Outcomes Research Training (NCI R25CA92203) and a Young Investigator Award from the Children’s Tumor Foundation. Ana-Maria Vranceanu is supported by 2 clinical trial awards from the Children’s Tumor Foundation and one Clinical trial award from the Department of Defense Neurofibromatosis Research Program.

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Author notes

  1. Vanessa L. Merker and Sarah McDannold are co-first authors of this work.

  2. Scott R. Plotkin and Ana-Maria Vranceanu are co-senior authors of this work.

Authors and Affiliations

  1. Department of Neurology and Cancer Center, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Vanessa L. Merker, Monica R. Sheridan, Justin T. Jordan & Scott R. Plotkin

  2. Department of Health Law, Policy and Management, Boston University School of Public Health, Boston, MA, USA

    Vanessa L. Merker & Sarah McDannold

  3. Edith Nourse Rogers Memorial VA Hospital, Bedford, MA, USA

    Sarah McDannold

  4. Department of Psychology, Fordham University, Bronx, NY, USA

    Eric Riklin

  5. Hand and Upper Extremity Service, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Mojtaba Talaei-Khoei

  6. Department of Psychiatry, Behavioral Medicine Service, Massachusetts General Hospital, Harvard Medical School, One Bowdoin Square, 7th floor, Suite 758, Boston, MA, 02114, USA

    Ana-Maria Vranceanu

Authors
  1. Vanessa L. Merker
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  2. Sarah McDannold
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  8. Ana-Maria Vranceanu
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Corresponding author

Correspondence to Ana-Maria Vranceanu.

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Merker, V.L., McDannold, S., Riklin, E. et al. Health literacy assessment in adults with neurofibromatosis: electronic and short-form measurement using FCCHL and Health LiTT. J Neurooncol 136, 335–342 (2018). https://doi.org/10.1007/s11060-017-2657-8

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  • DOI: https://doi.org/10.1007/s11060-017-2657-8

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