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Literacy assessment of preimplantation genetic patient education materials exceed national reading levels

  • Assisted Reproduction Technologies
  • Published:
Journal of Assisted Reproduction and Genetics Aims and scope Submit manuscript

Abstract

Purpose

In vitro fertilization with preimplantation genetic testing (IVF+PGT-M) reduces the risk of having a child affected by a heritable condition, yet only one-third of eligible patients are aware of this reproductive option. Access to education materials written at appropriate literacy levels could raise patients’ awareness, but there is a mismatch between patient reading ability and the literacy demand of most materials. This study aimed to systematically identify written education materials on IVF+PGT-M and evaluate their literacy levels. We hypothesized that materials would fail to meet standards set by the Joint Commission and Centers for Disease Control and Prevention (CDC).

Methods

To identify patient education materials about IVF+PGT-M from academic databases and public-facing sources, an environmental scan was performed. Materials were analyzed using three validated scales: Simple Measure of Gobbledygook, Patient Education Materials Assessment Tool, and Clear Communication Index.

Results

Seventeen patient education materials about IVF+PGT-M were identified from patient education databases, a consumer search engine, and professional organizations. The median reading level was 14.5 grade, median understandability was 74.2%, and median comprehensibility was 73.3%.

Conclusions

For most American adults, materials about IVF+PGT-M are not readable, understandable, or clear. The Joint Commission requires patient education materials be written at or below 5th grade reading level and the CDC recommends a 90% minimum score for comprehensibility. No evaluated material met these guidelines. Patient education materials that exceed average American literacy skills may perpetuate disparities in the utilization of IVF+PGT-M. Materials that communicate this complicated subject at an understandable level are needed.

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Abbreviations

AHRQ:

Agency for Healthcare Research and Quality

CDC:

Centers for Disease Control and Prevention

Index:

CDC Clear Communication Index

IVF:

In vitro fertilization

PEM:

Patient education material

PEMAT:

Patient Education Materials Assessment Tool

PGD:

Preimplantation genetic diagnosis

PGT-M:

Preimplantation genetic testing, monogenic

PND:

Prenatal diagnosis

SMOG:

Simple Measure of Gobbledygook

References

  1. Findlay I, Quirke P, Hall J, Rutherford A. Fluorescent PCR: a new technique for PGD of sex and single-gene defects. J Assist Reprod Genet. 1996;13(2):96–103.

    CAS  PubMed  Google Scholar 

  2. Dreesen J, Destouni A, Kourlaba G, Degn B, Christensen Mette W, Carvalho F, et al. Evaluation of PCR-based preimplantation genetic diagnosis applied to monogenic diseases: a collaborative ESHRE PGD consortium study. Eur J Hum Genet. 2014;22(8):1012–8.

    CAS  PubMed  Google Scholar 

  3. Imudia AN, Plosker S. The past, present, and future of preimplantation genetic testing. Clin Lab Med. 2016;36(2):385–99.

    PubMed  Google Scholar 

  4. Chang J, Boulet SL, Jeng G, Flowers L, Kissin DM. Outcomes of in vitro fertilization with preimplantation genetic diagnosis: an analysis of the United States Assisted Reproductive Technology Surveillance Data, 2011-2012. Fertil Steril. 2016;105(2):394–400.

    PubMed  Google Scholar 

  5. Ginsburg ES, Baker VL, Racowsky C, Wantman E, Goldfarb J, Stern JE. Use of preimplantation genetic diagnosis and preimplantation genetic screening in the United States: a Society for Assisted Reproductive Technology Writing Group paper. Fertil Steril. 2011;96(4):865–8.

    PubMed  Google Scholar 

  6. Oyewo A, Salubi-Udu J, Khalaf Y, Braude P, Renwick P, Lashwood A, et al. Preimplantation genetic diagnosis for the prevention of sickle cell disease: current trends and barriers to uptake in a London teaching hospital. Hum Fertil (Camb). 2009;12(3):153–9.

    Google Scholar 

  7. Cunningham J, Goldsmith L, Skirton H. The evidence base regarding the experiences of and attitudes to preimplantation genetic diagnosis in prospective parents. Midwifery. 2015;31(2):288–96.

    PubMed  Google Scholar 

  8. Drazba KT, Kelley MA, Hershberger PE. A qualitative inquiry of the financial concerns of couples opting to use preimplantation genetic diagnosis to prevent the transmission of known genetic disorders. J Genet Couns. 2014;23(2):202–11.

    PubMed  Google Scholar 

  9. Quinn GP, Vadaparampil ST, King LM, Miree CA, Friedman S. Conflict between values and technology: perceptions of preimplantation genetic diagnosis among women at increased risk for hereditary breast and ovarian cancer. Familial Cancer. 2009;8(4):441–9.

    PubMed  Google Scholar 

  10. Quinn GP, Vadaparampil ST, Miree CA, Lee JH, Zhao X, Friedman S, et al. High risk men’s perceptions of pre-implantation genetic diagnosis for hereditary breast and ovarian cancer. Hum Reprod. 2010;25(10):2543–50.

    CAS  PubMed  Google Scholar 

  11. Darbari I, O’Brien JE, Hardy SJ, Speller-Brown B, Thaniel L, Martin B, et al. Views of parents of children with sickle cell disease on pre-implantation genetic diagnosis. Pediatr Blood Cancer. 2018;65(8):e27102.

    PubMed  Google Scholar 

  12. Musters AM, Twisk M, Leschot NJ, Oosterwijk C, Korevaar JC, Repping S, et al. Perspectives of couples with high risk of transmitting genetic disorders. Fertil Steril. 2010;94(4):1239–43.

    PubMed  Google Scholar 

  13. Kutner M, Greensberg E, Jin Y, Paulsen C. The health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). National Center for Education Statistics: Washington, D.C; 2006.

    Google Scholar 

  14. McClure E, Ng J, Vitzthum K, Rudd R. A mismatch between patient education materials about sickle cell disease and the literacy level of their intended audience. Prev Chronic Dis. 2016;13:E64.

    PubMed  PubMed Central  Google Scholar 

  15. Martin A, Stewart JR, Gaskins J, Medlin E. A systematic assessment of Google search queries and readability of online gynecologic oncology patient education materials. J Cancer Educ. 2019;34(3):435–40.

    PubMed  Google Scholar 

  16. Balakrishnan V, Chandy Z, Hseih A, Bui T, Verma SP. Readability and understandability of online vocal cord paralysis materials. Otolaryngol Head Neck Surg. 2016;154(3):460–4.

    PubMed  Google Scholar 

  17. Balakrishnan V, Chandy Z, Verma SP. Are online Zenker’s diverticulum materials readable and understandable? Otolaryngol Head Neck Surg. 2016;155(5):758–63.

    PubMed  Google Scholar 

  18. Lopez Ramos C, Williams JE, Babebekov YJ, Chang David C, Carter BS, Jones PS. Assessing the understandability and actionability of online neurosurgical patient education materials. World Neurosurgery. 2019.

  19. Bonner C, Patel P, Fajardo MA, Zhuang R, Trevena L. Online decision aids for primary cardiovascular disease prevention: systematic search, evaluation of quality and suitability for low health literacy patients. BMJ Open. 2019;9(3):e025173.

    PubMed  PubMed Central  Google Scholar 

  20. Wong K, Gilad A, Cohen MB, Kirke DN, Jalisi SM. Patient Education Materials Assessment Tool for laryngectomy health information. Head Neck. 2017;39(11):2256–63.

    PubMed  Google Scholar 

  21. Clancy AA, Hickling D, Didomizio L, Sanaee M, Shehata F, Zee R, et al. Patient-targeted websites on overactive bladder: what are our patients reading? Neurourol Urodyn. 2018;37(2):832–41.

    PubMed  Google Scholar 

  22. Murphy J, Vaughn J, Gelber K, Geller A, Zakowski M. Readability, content, quality and accuracy assessment of internet-based patient education materials relating to labor analgesia. Int J Obstet Anesth. 2019;39:82–7.

    CAS  PubMed  Google Scholar 

  23. Fahimuddin FZ, Sidhu SDO, Agrawal A. Reading level of online patient education materials from major obstetrics and gynecology societies. Obstet Gynecol. 2019;133(5):987–93.

    PubMed  Google Scholar 

  24. Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, et al. The health care experience of patients with low literacy. Arch Fam Med. 1996;5(6):329–34.

    CAS  PubMed  Google Scholar 

  25. McLaughlin G. SMOG grading: a new readability formula. J Read. 1969;12(8):639–46.

    Google Scholar 

  26. Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns. 2014;96(3):395–403.

    PubMed  PubMed Central  Google Scholar 

  27. Shoemaker SJ, Wolf MS, Brach C. The Patient Education Materials Assessment Tool (PEMAT) and user’s guide (prepared by Abt Associates, Inc. under contract no. HHSA290200900012I, TO 4). Rockville, MD: 2013.

  28. Centers for Disease Control and Prevention. CDC Clear Communications Index: user guide. 2014;1–33.

  29. Baur C, Prue C. The CDC Clear Communication Index is a new evidence-based tool to prepare and review health information. Health Promot Pract. 2014;15(5):629–37.

    PubMed  Google Scholar 

  30. The Joint Commission Health Care Literacy Expert Roundtable. What did the doctor say?: improving health literacy to protect patient safety. IL: Oakbrook Terrace; 2007.

    Google Scholar 

  31. Committee on Health Literacy. Health literacy: a prescription to end confusion. Washington, D.C.: The National Academies Press; 2004.

    Google Scholar 

  32. The Joint Commission. Advancing effective communication, cultural competence, and patient- and family-centered care: a roadmap for hospitals. Oakbrook Terrace, IL: The Joint Commission; 2010.

    Google Scholar 

  33. Hatch T, Pearson T. Using environmental scans in educational needs assessments. J Contin Educ Heal Prof. 1998;18:179–84.

    Google Scholar 

  34. Fajardo MA, Weir KR, Bonner C, Gnjidic D, Jansen J. Availability and readability of patient education materials for deprescribing: an environmental scan. Br J Clin Pharmacol. 2019;85(7):1396–406.

    PubMed  PubMed Central  Google Scholar 

  35. Aslakson RA, Schuster ALR, Miller J, Weiss M, Volandes AE, Bridges JFP. An environmental scan of advance care planning decision aids for patients undergoing major surgery: a study protocol. Patient - Patient-Centered Outcomes Res. 2014;7(2):207–17.

    Google Scholar 

  36. Donnelly KZ, Thompson R. Medical versus surgical methods of early abortion: protocol for a systematic review and environmental scan of patient decision aids. BMJ Open. 2015;5(7):e007966.

    PubMed  PubMed Central  Google Scholar 

  37. Saunders CH, Elwyn G, Kirkland K, Durand M. Serious choices: a protocol for an environmental scan of patient decision aids for seriously ill people at risk of death facing choices about life-sustaining treatments. Patient - Patient-Centered Outcomes Res. 2018;11(1):97–106.

    Google Scholar 

  38. NHS Commissioning Board Clinical Reference Group for Genetics. Clinical commissioning policy: pre-implantation genetic diagnosis (PGD). NHSCB/E01/P/a. 2013.

  39. Jansen BJ, Spink A. How are we searching the World Wide Web? A comparison of nine search engine transaction logs. Inf Process Manag. 2006;42(1):248–63.

    Google Scholar 

  40. The Practice Committee of the American Society of Reproductive Medicine. Preimplantation genetic diagnosis. Fertil Steril. 2004;82(SUPPL1):S120–2.

    Google Scholar 

  41. The SMOG Readability Formula [Internet]. [cited June 25, 2019]. Available from: https://library.med.utah.edu/Patient_Ed/workshop/handouts/module4.pdf.

  42. Assessing Materials: SMOG - assessing the reading level of prose [Internet]. [cited June 25, 2019]. Available from: https://www.hsph.harvard.edu/healthliteracy/assessing-and-developing-materials/.

  43. Given L. Trustworthiness. The SAGE encyclopedia of qualitative research methods. 2008.

  44. Frey BB. Spearman correlation coefficient. The SAGE encyclopedia of educational research, measurement, and evaluation. 2018.

  45. Salkind N. Cohen’s kappa. Encyclopedia of measurement and statistics. 2007.

  46. Kelly A. The neglected majority: what Americans without a college degree think about higher education. Forbes. 2015.

  47. Ernst MM, Chen D, Kennedy K, Jewell T, Sajwani A, Foley C, et al. Disorders of sex development (DSD) web-based information: quality survey of DSD team websites. Int J Pediatr Endocrinol. 2019;2019(1):1.

    CAS  PubMed  PubMed Central  Google Scholar 

  48. Klitzman R, Abbate KJ, Chung WK, Ottman R, Leu C, Appelbaum PS. Views of preimplantation genetic diagnosis among psychiatrists and neurologists. J Reprod Med. 2014;59(7-8):385–92.

    PubMed  PubMed Central  Google Scholar 

  49. Klitzman R, Chung W, Marder K, Shanmugham A, Chin LJ, Stark M, et al. Views of internists towards uses of PGD. Reprod BioMed Online. 2013;26(2):142–7.

    PubMed  Google Scholar 

  50. Quinn M, Fujimoto V. Racial and ethnic disparities in assisted reproductive technology access and outcomes. Fertil Steril. 2016;105(5):1119–23.

    PubMed  Google Scholar 

  51. Childress KJ, Lawson AK, Ghant MS, Mendoza G, Cardozo ER, Confino E, et al. First contact: the intersection of demographics, knowledge, and appraisal of treatment at the initial infertility visit. Fertil Steril. 2015;104(1):180–7.

    PubMed  PubMed Central  Google Scholar 

  52. Loren AW, Senapati S. Fertility preservation in patients with hematologic malignancies and recipients of hematopoietic cell transplants. Blood. 2019;134(9):746–60.

    CAS  PubMed  Google Scholar 

  53. Moreau C, Bouyer J, Ducot B, Spira A, Slama R. When do involuntarily infertile couples choose to seek medical help? Fertil Steril. 2010;93(3):737–44.

    PubMed  Google Scholar 

  54. Hays DG, Wood C, Dahl H, Kirk-Jenkins A. Methodological rigor in Journal of Counseling & Development qualitative research articles: a 15-year review. J Couns Dev. 2016;94(2):172–83.

    Google Scholar 

  55. Madeira JL, Rehbein J, Christianson MS, Lee M, Parry JP, Pennings G, et al. Using the EngagedMD multimedia platform to improve informed consent for ovulation induction, intrauterine insemination, and in vitro fertilization. Fertil Steril. 2018;110(7):1338–46.

    PubMed  Google Scholar 

  56. Novak CB, Mak L, Chang M. Evaluation of written and video education tools after mallet finger injury. J Hand Ther. 2019;32(4):452–6.

    PubMed  Google Scholar 

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Acknowledgments

The authors thank Gail Geller and Joseph Carrese for mentorship in project design, Christina Mitchell for guidance and support, Christine Hertenstein and Weiyi Mu for providing references as key informants, Jaime Blanck for assistance in developing the search strategy, and Chelsea Moriarty for proofreading support.

Funding

LHP is supported by an American Society of Hematology Clinical Scholars Award and the Johns Hopkins University Building Interdisciplinary Research Careers in Women’s Health Program.

Author information

Author notes

  1. Dr. Pecker and Dr. Christianson contributed equally to this work.

Authors and Affiliations

  1. Johns Hopkins University School of Medicine, Baltimore, MD, USA

    Macy L. Early, Priyanka Kumar, Arik V. Marcell, Cathleen Lawson, Mindy Christianson & Lydia H. Pecker

  2. Division of General Pediatrics and Adolescent Medicine, Department of Pediatrics, Baltimore, MD, USA

    Arik V. Marcell

  3. Department of Gynecology and Obstetrics, Baltimore, MD, USA

    Cathleen Lawson, Mindy Christianson & Lydia H. Pecker

  4. Division of Reproductive Endocrinology/Infertility, Lutherville, MD, USA

    Mindy Christianson

  5. Division of Hematology, Department of Medicine, Baltimore, MD, USA

    Lydia H. Pecker

Authors
  1. Macy L. Early
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  2. Priyanka Kumar
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  4. Cathleen Lawson
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Corresponding author

Correspondence to Macy L. Early.

Ethics declarations

This study was considered exempt by the Johns Hopkins Institutional Review Board.

Conflict of interest

LHP is supported by an American Society of Hematology Clinical Scholars Award and the Johns Hopkins University Building Interdisciplinary Research Careers in Women’s Health Program. The authors report no conflicts of interest.

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Early, M.L., Kumar, P., Marcell, A.V. et al. Literacy assessment of preimplantation genetic patient education materials exceed national reading levels. J Assist Reprod Genet 37, 1913–1922 (2020). https://doi.org/10.1007/s10815-020-01837-z

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