Abstract
BackgroundShared 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.MethodsWe 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.ResultsTwenty-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.ConclusionsThe 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 registrationRegistered 24 October 2014 in PROSPERO International prospective register of systematic reviews (CRD42014014470).Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0303-6) contains supplementary material, which is available to authorized users.
Highlights
Shared decision-making (SDM) is considered a key component of high quality cancer care and may be supported by patient decision aids (PtDAs)
We argue that PtDAs for disadvantaged patients should be tailored to address social determinants of health (SDH) because such tools can help them think through and, importantly, share with their clinicians concerns about how SDH-related barriers influence their preferences for treatment
Eligibility criteria, search methods, study selection and data extraction We examined all randomized controlled trial (RCT) of PtDAs that were found in the 2014 updated Cochrane systematic review of patient decision aids [20] plus 6 other trials identified in an independent search of PubMed, CINAHL and PsycINFO (January 2010 through December 2013) using terms similar to the Cochrane protocol (Additional file 1)
Summary
Shared decision-making (SDM) is considered a key component of high quality cancer care and may be supported by patient decision aids (PtDAs). 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 [4,5,6,7,8,9], undergo greater variation in screenings and treatments received [4, 5, 8,9,10,11], 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 more likely to report worse patientprovider communication and quality of care [14]. Interventions involving patient decision aids (PtDAs), developed with attention to SDH, represent important opportunities to influence patient-provider communication and shared decision making (SDM) processes
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