Are cancer-related decision aids appropriate for socially disadvantaged patients? A systematic review of US randomized controlled trials

BMC Medical Informatics and Decision Making, Jun 2016

Background Shared decision-making (SDM) is considered a key component of high quality cancer care and may be supported by patient decision aids (PtDAs). Many patients, however, face multiple social disadvantages that may influence their ability to fully participate in SDM or to use PtDAs; additionally, these social disadvantages are among the determinants of health associated with greater cancer risk, unwarranted variations in care and worse outcomes. The purpose of this systematic review is to describe the extent to which disadvantaged social groups in the United States (US) have been included in trials of cancer-related PtDAs and to highlight strategies, lessons learned and future opportunities for developing and evaluating PtDAs that are appropriate for disadvantaged populations. Methods We selected cancer-related US studies from the Cochrane 2014 review of PtDAs and added RCTs meeting Cochrane criteria from searches of PubMed, CINAHL, PsycINFO (January 2010 to December 2013); and reference lists. Two reviewers independently screened titles/abstracts; three reviewers independently screened full text articles, performed data extraction and assessed: 1) inclusion of participants based on seven indicators of social disadvantage (limited education; female gender; uninsured or Medicaid status; non-U.S. nativity; non-White race or Hispanic ethnicity; limited English proficiency; low-literacy), and 2) attention to social disadvantage in the development or evaluation of PtDAs. Results Twenty-three of 39 eligible RCTs included participants from at least one disadvantaged subgroup, most frequently racial/ethnic minorities or individuals with limited education and/or low-literacy. Seventeen studies discussed strategies and lessons learned in attending to the needs of disadvantaged social groups in PtDA development; 14 studies targeted disadvantaged groups or addressed subgroup differences in PtDA evaluation. Conclusions The diversity of the US population is represented in a majority of cancer-related PtDA RCTs, but fewer studies have tailored PtDAs to address the multiple social disadvantages that may impact patients’ participation in SDM. More detailed attention to the comprehensive range of social factors that determine cancer risk, variations in care and outcomes is needed in the development and evaluation of PtDAs for disadvantaged populations. Trial registration Registered 24 October 2014 in PROSPERO International prospective register of systematic reviews (CRD42014014470).

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Are cancer-related decision aids appropriate for socially disadvantaged patients? A systematic review of US randomized controlled trials

Enard et al. BMC Medical Informatics and Decision Making Are cancer-related decision aids appropriate for socially disadvantaged patients? A systematic review of US randomized controlled trials Kimberly R. Enard 0 Patricia Dolan Mullen 2 Geetanjali R. Kamath 1 Nickell M. Dixon 3 Robert J. Volk 1 0 Department of Health Management and Policy, Saint Louis University , 3545 Lafayette Avenue, Saint Louis, MO , USA 1 Department of Health Services Research, The University of Texas MD Anderson Cancer Center , P.O. Box 301402, Unit 1444, Houston, TX , USA 2 Department of Health Promotion and Behavioral Sciences, The University of Texas School of Public Health , 7000 Fannin Street, UCT Suite 2522, Houston, TX 77030 , USA 3 Michigan Department of Health and Human Services , 201 Townsend Street, Lansing MI 48913 , USA Background: Shared decision-making (SDM) is considered a key component of high quality cancer care and may be supported by patient decision aids (PtDAs). Many patients, however, face multiple social disadvantages that may influence their ability to fully participate in SDM or to use PtDAs; additionally, these social disadvantages are among the determinants of health associated with greater cancer risk, unwarranted variations in care and worse outcomes. The purpose of this systematic review is to describe the extent to which disadvantaged social groups in the United States (US) have been included in trials of cancer-related PtDAs and to highlight strategies, lessons learned and future opportunities for developing and evaluating PtDAs that are appropriate for disadvantaged populations. Methods: We selected cancer-related US studies from the Cochrane 2014 review of PtDAs and added RCTs meeting Cochrane criteria from searches of PubMed, CINAHL, PsycINFO (January 2010 to December 2013); and reference lists. Two reviewers independently screened titles/abstracts; three reviewers independently screened full text articles, performed data extraction and assessed: 1) inclusion of participants based on seven indicators of social disadvantage (limited education; female gender; uninsured or Medicaid status; non-U.S. nativity; non-White race or Hispanic ethnicity; limited English proficiency; low-literacy), and 2) attention to social disadvantage in the development or evaluation of PtDAs. Results: Twenty-three of 39 eligible RCTs included participants from at least one disadvantaged subgroup, most frequently racial/ethnic minorities or individuals with limited education and/or low-literacy. Seventeen studies discussed strategies and lessons learned in attending to the needs of disadvantaged social groups in PtDA development; 14 studies targeted disadvantaged groups or addressed subgroup differences in PtDA evaluation. Conclusions: The diversity of the US population is represented in a majority of cancer-related PtDA RCTs, but fewer studies have tailored PtDAs to address the multiple social disadvantages that may impact patients' participation in SDM. More detailed attention to the comprehensive range of social factors that determine cancer risk, variations in care and outcomes is needed in the development and evaluation of PtDAs for disadvantaged populations. Cancer; Decision aids; Decision-making; Disparities; Social disadvantage - Trial registration: Registered 24 October 2014 in PROSPERO International prospective register of systematic reviews (CRD42014014470). Background The social determinants of health (SDH) are conditions in which people live, learn, work and play that interact with individual-level characteristics (e.g., age, gender, genetics, behavior) to affect a wide range of health risks and outcomes [ 1–3 ]. In the cancer care continuum, rates of incidence and death for the most common cancer types vary considerably within and across socioeconomic groups [ 4 ]. However, patients in the United States (US) who are members of certain disadvantaged subgroups (e.g., racial/ ethnic minorities, the uninsured or underinsured and individuals with limited education, low income or unhealthy living conditions) are more likely than those in advantaged groups to be diagnosed with cancer at later stages [ 4–9 ], undergo greater variation in screenings and treatments received [ 4, 5, 8–11 ], and experience higher rates of morbidity and mortality [ 4, 5, 8, 9, 12, 13 ]. Compared to those in advantaged groups, cancer patients in disadvantaged subgroups are also more likely to report worse patientprovider communication and quality of care [14]. In recent years, the call to address SDH as key drivers of health inequities has gained momentum among health system leaders and policymakers in the US. Objectives outlined in Healthy People 2020 emphasize the importance of addressing SDH as one of four overarching goals for the decade [ 2 ]. New research also identifies the need to move beyond simply recognizing the fundamental role upstream SDH play in influencing health toward using this knowledge to develop and (...truncated)


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Kimberly Enard, Patricia Dolan Mullen, Geetanjali Kamath, Nickell Dixon, Robert Volk. Are cancer-related decision aids appropriate for socially disadvantaged patients? A systematic review of US randomized controlled trials, BMC Medical Informatics and Decision Making, 2016, pp. 64, 16, DOI: 10.1186/s12911-016-0303-6