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A review of clinical trials of advance care planning interventions adapted for limited health literacy

Published online by Cambridge University Press:  27 August 2021

Mary Clare K. Houlihan Open the ORCID record for Mary Clare K. Houlihan [Opens in a new window] ,
Masako Mayahara ,
Barbara Swanson  and
Louis Fogg
Mary Clare K. Houlihan*
Affiliation:
College of Nursing, Rush University, Chicago, IL
Masako Mayahara
Affiliation:
College of Nursing, Rush University, Chicago, IL
Barbara Swanson
Affiliation:
College of Nursing, Rush University, Chicago, IL
Louis Fogg
Affiliation:
College of Nursing, Rush University, Chicago, IL
*
Author for correspondence: Mary Clare Houlihan, Rush University, 600 S Paulina St., #1080, Chicago, IL 60612, USA. E-mail: maryclare_k_houlihan@rush.edu
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Abstract

Objectives

Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies.

Methods

This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool.

Results

The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses.

Significance of results

More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients’ health literacy levels to address their advance care planning needs.

Keywords

Advance care planningCritical appraisalHealth literacyRandomized controlled trialsReview
Type
Review Article
Information
Palliative & Supportive Care , Volume 20 , Issue 4 , August 2022 , pp. 593 - 599
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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References

REFERENCES

Baker, DW, Williams, MV, Parker, RM, et al. (1999) Development of a brief test to measure functional health literacy. Patient Education and Counseling 38(1), 33–42. doi:10.1016/s0738-3991(98)00116-5CrossRefGoogle ScholarPubMed
Davis, TC, Long, SW, Jackson, RH, et al. (1993) Rapid estimate of adult literacy in medicine: A shortened screening instrument. Family Medicine 25(6), 391–395.Google Scholar
de Vries, K, Banister, E, Dening, KH, et al. (2019) Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy. Nursing Ethics 26(7–8), 1946–1954. doi:10.1177/0969733019833130CrossRefGoogle ScholarPubMed
Edmond, SN, Turk, DC, Williams, DA, et al. (2019) Considerations of trial design and conduct in behavioral interventions for the management of chronic pain in adults. PAIN Reports 4(3), e655. doi:10.1097/PR9.0000000000000655CrossRefGoogle ScholarPubMed
Eneanya, ND, Olaniran, K, Xu, D, et al. (2018) Health literacy mediates racial disparities in cardiopulmonary resuscitation knowledge among chronic kidney disease patients. Journal of Health Care for the Poor and Underserved 29(3), 1069–1082. doi:10.1353/hpu.2018.0080CrossRefGoogle ScholarPubMed
Gazarian, PK, Cronin, J, Dalto, JL, et al. (2019) A systematic evaluation of advance care planning patient educational resources. Geriatric Nursing (New York, N.Y.) 40(2), 174–180. doi:10.1016/j.gerinurse.2018.09.011CrossRefGoogle ScholarPubMed
Hamel, L, Wu, B and Brodie, M (2017) Views and Experiences with End-of-Life Medical Care in the U.S., p. 21.Google Scholar
Heale, R and Twycross, A (2015) Validity and reliability in quantitative studies. Evidence Based Nursing 18(3), 66–67. doi:10.1136/eb-2015-102129CrossRefGoogle ScholarPubMed
Hickman, SE, Unroe, KT, Ersek, M, et al. (2019) Systematic advance care planning and potentially avoidable hospitalizations of nursing facility residents. Journal of the American Geriatrics Society 67(8), 1649–1655. doi:10.1111/jgs.15927CrossRefGoogle ScholarPubMed
Hong, M, Yi, E-H, Johnson, KJ, et al. (2018) Facilitators and barriers for advance care planning among ethnic and racial minorities in the U.S.: A systematic review of the current literature. Journal of Immigrant and Minority Health 20(5), 1277–1287. doi:10.1007/s10903-017-0670-9CrossRefGoogle ScholarPubMed
Houben, CHM, Spruit, MA, Groenen, MTJ, et al. (2014) Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association 15(7), 477–489. doi:10.1016/j.jamda.2014.01.008CrossRefGoogle ScholarPubMed
Institute of Medicine (2015) Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. National Academies Press. doi:10.17226/18748Google Scholar
Jimenez, G, Tan, WS, Virk, AK, et al. (2018) Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. Journal of Pain and Symptom Management 56(3), 436–459.e25. doi:10.1016/j.jpainsymman.2018.05.016CrossRefGoogle ScholarPubMed
Kermel-Schiffman, I and Werner, P (2017) Knowledge regarding advance care planning: A systematic review. Archives of Gerontology and Geriatrics 73, 133–142. doi:10.1016/j.archger.2017.07.012CrossRefGoogle ScholarPubMed
Ladin, K, Buttafarro, K, Hahn, E, et al. (2018) “End-of-life care? I'm not going to worry about that yet.” Health literacy gaps and end-of-life planning Among elderly dialysis patients. The Gerontologist 58(2), 290–299. doi:10.1093/geront/gnw267CrossRefGoogle ScholarPubMed
Manuel, JI (2018) Racial/ethnic and gender disparities in health care use and access. Health Services Research 53(3), 1407–1429. doi:10.1111/1475-6773.12705CrossRefGoogle ScholarPubMed
Moher, D, Liberati, A, Tetzlaff, J, et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine 6(7), e1000097. doi:10.1371/journal.pmed.1000097CrossRefGoogle ScholarPubMed
Muvuka, B, Combs, RM, Ayangeakaa, SD, et al. (2020) Health literacy in African-American communities: Barriers and strategies. HLRP: Health Literacy Research and Practice 4(3), e138–e143. doi:10.3928/24748307-20200617-01Google ScholarPubMed
Nielsen-Bohlman, L, Panzer, A and Kindig, D (2004) Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press.CrossRefGoogle Scholar
Nouri, SS, Barnes, DE, Volow, AM, et al. (2019) Health literacy matters more than experience for advance care planning knowledge among older adults. Journal of the American Geriatrics Society 67(10), 2151–2156. doi:10.1111/jgs.16129CrossRefGoogle ScholarPubMed
Rhee, TG, Marottoli, RA, Van Ness, PH, et al. (2019) Impact of perceived racism on healthcare access among older minority adults. American Journal of Preventive Medicine 56(4), 580–585. doi:10.1016/j.amepre.2018.10.010CrossRefGoogle ScholarPubMed
RTI International (2011) Health Literacy Interventions and Outcomes: An Updated Systematic Review. Agency for Healthcare Research and Quality.Google Scholar
Stormacq, C, den Broucke, SV and Wosinski, J (2019) Does health literacy mediate the relationship between socioeconomic status and health disparities? Integrative review. Health Promotion International 34(5), e1–e17. doi:10.1093/heapro/day062CrossRefGoogle ScholarPubMed
Sudore, RL, Landefeld, CS, Barnes, DE, et al. (2007) An advance directive redesigned to meet the literacy level of most adults: A randomized trial. Patient Education and Counseling 69(1–3), 165–195. doi:10.1016/j.pec.2007.08.015CrossRefGoogle ScholarPubMed
Sudore, R, Le, GM, McMahon, R, et al. (2015) The advance care planning PREPARE study among older veterans with serious and chronic illness: Study protocol for a randomized controlled trial. Trials 16. doi:10.1186/s13063-015-1055-9CrossRefGoogle ScholarPubMed
Sudore, RL, Barnes, DE, Le, GM, et al. (2016) Improving advance care planning for English-speaking and Spanish-speaking older adults: Study protocol for the PREPARE randomised controlled trial. BMJ Open 6(7), e011705. doi:10.1136/bmjopen-2016-011705CrossRefGoogle ScholarPubMed
Sudore, RL, Boscardin, J, Feuz, MA, et al. (2017a) Effect of the PREPARE website vs an easy-to-read advance directive on advance care planning documentation and engagement among veterans: A randomized clinical trial. JAMA Internal Medicine 177(8), 1102–1109. doi:10.1001/jamainternmed.2017.1607CrossRefGoogle Scholar
Sudore, RL, Lum, HD, You, JJ, et al. (2017b) Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management 53(5), 821–832.e1. doi:10.1016/j.jpainsymman.2016.12.331CrossRefGoogle Scholar
Sudore, RL, Cuervo, IA, Tieu, L, et al. (2018a) Advance care planning for older homeless-experienced adults: Results from the health outcomes of people experiencing homelessness in older middle age study. Journal of the American Geriatrics Society 66(6), 1068–1074. doi:10.1111/jgs.15417CrossRefGoogle Scholar
Sudore, RL, Schillinger, D, Katen, MT, et al. (2018b) Engaging diverse English- and Spanish-speaking older adults in advance care planning: The PREPARE randomized clinical trial. JAMA Internal Medicine 178(12), 1616–1625. doi:10.1001/jamainternmed.2018.4657CrossRefGoogle Scholar
Tufanaru, C, Munn, Z, Aromataris, E, et al. (2020) Chapter 3: Systematic reviews of effectiveness. In Aromataris, E & Munn, Z (eds.), JBI Manual for Evidence Synthesis. JBI. Available at: https://synthesismanual.jbi.globalGoogle Scholar
Volandes, A, Paasche-Orlow, MK, Barry, MJ, et al. (2009) Video decision support tool for advance care planning in dementia: Randomised controlled trial. BMJ (Clinical Research Ed.) 338, b2159. doi:10.1136/bmj.b2159Google ScholarPubMed
Volandes, A, Ferguson, LA, Davis, AD, et al. (2011) Assessing end-of-life preferences for advanced dementia in rural patients using an educational video: A randomized controlled trial. Journal of Palliative Medicine 14(2), 169–177. doi:10.1089/jpm.2010.0299CrossRefGoogle ScholarPubMed
Weathers, E, O'Caoimh, R, Cornally, N, et al. (2016) Advance care planning: A systematic review of randomised controlled trials conducted with older adults. Maturitas 91, 101–109. doi:10.1016/j.maturitas.2016.06.016CrossRefGoogle ScholarPubMed