Abstract
Survivorship care plans (SCPs) serve to communicate critical information needed for cancer survivors’ long-term follow-up care. The extent to which SCPs are tailored to meet the specific needs of underserved patient populations is understudied. To fill this gap, this study aimed to assess the content and communication appropriateness of SCPs collected from diverse healthcare settings. We analyzed collected SCPs (n = 16) for concordance with Institute of Medicine (IOM) recommendations for SCP content and for communication appropriateness using the Suitability Assessment of Materials (SAM) instrument. All plans failed to incorporate all IOM criteria, with the majority of plans (n = 11) incorporating less than 60% of recommended content. The average reading grade level of all the plans was 14, and only one plan received a superior rating for cultural appropriateness. There is significant variation in the format and content of SCPs used in diverse hospital settings and most plans are not written at an appropriate reading grade level nor tailored for underserved and/or minority patient populations. Co-designing SCPs with diverse patient populations is crucial to ensure that these documents are meeting the needs and preferences of all cancer survivors.
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References
Miller KD, Siegel RL, Lin CC, Mariotto AB, Kramer JL, Rowland JH, Stein KD, Alteri R, Jemal A (2016) Cancer treatment and survivorship statistics. CA Cancer J Clin 66(4):271–289
Siegel RL, Miller KD, Jemal A (2019) Cancer statistics. CA Cancer J Clin 69:7–34
Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH (2011) Cancer survivors: a booming population. Cancer Epidemiology and Prevention Biomarkers 20(10):1996–2005
Pisu M, Kenzik KM, Oster RA, Drentea P, Ashing KT, Fouad M, Martin MY (2015) Economic hardship of minority and non-minority cancer survivors 1 year after diagnosis: another long-term effect of cancer? Cancer 121(8):1257–1264
Aziz NM, Rowland JH (2002) Cancer survivorship research among ethnic minority and medically underserved groups. Oncol Nurs Forum 29(5):789–806
Smedley BD, Haynes MA (1991) The unequal burden of cancer: an assessment of NIH research and programs for ethnic minorities and the medically underserved. The National Academies Press, Washington DC
N.R. Council (1995) From cancer patient to cancer survivor: lost in transition. The National Academies Press, Washington DC
Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB (2012) Survivorship care plans in research and practice. CA Cancer J Clin 62(2):101–117
Stricker CT, Jacobs LA, Risendal B, Jones A, Panzer S, Ganz PA, Syrjala KL, McCabe MS, Baker KS, Miller K (2011) Survivorship care planning after the institute of medicine recommendations: how are we faring? J Cancer Surviv 5(4):358–370
Palmer SC, Jacobs LA, DeMichele A, Risendal B, Jones AF, Stricker CT (2014) Metrics to evaluate treatment summaries and survivorship care plans: a scorecard. Support Care Cancer 22(6):1475–1483
Desmond RA, Jackson BE, Waterbor JW (2017) Disparities in cancer survivorship indicators in the deep south based on BRFSS data: recommendations for survivorship care plans. South Med J 110(3):181–187
Doak CC, Doak LG, Root JH (1985) Teaching patients with low literacy skills. Lippincott Williams and Wilkins, Pennsylvania
Ley P, Florio T (1996) The use of readability formulas in health care. Psychol Health Med 1(1):7–28
Weintraub D, Maliski SL, Fink A, Choe S, Litwin MS (2004) Suitability of prostate cancer education materials: applying a standardized assessment tool to currently available materials. Patient Educ Couns 55(2):275–280
Kaphingst KA, Zanfini CJ, Emmons KM (2006) Accessibility of web sites containing colorectal cancer information to adults with limited literacy (United States). Cancer Causes Control 17(2):147–151
Hoffmann T, McKenna K (2006) Analysis of stroke patients’ and carers’ reading ability and the content and design of written materials: recommendations for improving written stroke information. Patient Educ Couns 60(3):286–293
Daudt H, Van Mossel C, Dennis D, Leitz L, Watson H, Tanliao J (2014) Survivorship care plans: a work in progress. Curr Oncol 21(3):e466–e479
Mayer DK, Nekhlyudov L, Snyder CF, Merrill JK, Wollins DS, Shulman LN (2014) American Society of Clinical Oncology clinical expert statement on cancer survivorship care planning. J Oncol Pract 10(6):345–351
Weiss BD. 2007. Health literacy and patient safety: help patients understand. Manual for clinicians. American Medical Association Foundation
Burke NJ, Napoles TM, Banks PJ, Orenstein FS, Luce JA, Joseph G (2016) Survivorship care plan information needs: perspectives of safety-net breast cancer patients. PLoS One 11(12):1–15
Wen K-Y, Hu A, Ma GX, Fang CY, Daly MB (2014) Information and communication needs of Chinese American breast cancer patients: perspectives on survivorship care planning. J Commun Support Oncol 12(12):439–445
Hewitt ME, Bamundo A, Day R, Harvey C (2007) Perspectives on post-treatment cancer care: qualitative research with survivors, nurses, and physicians. J Clin Oncol 25(16):2270–2273
Ashing-Giwa K, Tapp C, Brown S, Fulcher G, Smith J, Mitchell E, Santifer RH, McDowell K, Martin V, Betts-Turner B (2013) Are survivorship care plans responsive to African-American breast cancer survivors?: voices of survivors and advocates. J Cancer Surviv 7(3):283–291
Freedman RA, Kouri EM, West DW, Keating NL (2015) Racial/ethnic disparities in knowledge about one's breast cancer characteristics. Cancer 121(5):724–732
Funding
This work was supported by the National Cancer Institute [grant numbers K24CA212294 and R01CA241128].
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All authors contributed to the study conception and design. Material preparation and data collection were performed by all authors. Data analysis was performed by Helena Lyson and Michael Bentz. The first draft of the manuscript was written by Helena Lyson, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Lyson, H.C., Haggstrom, D., Bentz, M. et al. Communicating Critical Information to Cancer Survivors: an Assessment of Survivorship Care Plans in Use in Diverse Healthcare Settings. J Canc Educ 36, 981–989 (2021). https://doi.org/10.1007/s13187-020-01725-1
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DOI: https://doi.org/10.1007/s13187-020-01725-1