References for Module 2

This training is based on the best available research evidence and peer-reviewed literature.

  1. Acquati C, Hibbard JH, Miller-Sonet E, Zhang A, Ionescu E. Patient activation and treatment decision-making in the context of cancer: examining the contribution of informal caregivers’ involvement. J Cancer Surviv. 2022;16(5):929-939. doi:10.1007/s11764-021-01085-9
  2. Altomare I, Wang X, Kaur M, et al. Are community oncology practices with or without clinical research programs different? A comparison of patient and practice characteristics. JNCI Cancer Spectrum. 2024;8(4):pkae060. doi:10.1093/jncics/pkae060
  3. American Association for Cancer Research. Cancer Disparities Progress Report: 2024. Philadelphia: American Association for Cancer Research; 2024. Available from http://www.CancerDisparitiesProgressReport.org/
  4. Bennett C, Graham ID, Kristjansson E, Kearing SA, Clay KF, O’Connor AM. Validation of a preparation for decision making scale. Patient Educ Couns. 2010;78(1):130-133. doi:10.1016/j.pec.2009.05.012
  5. Braddock CH 3rd, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA. 1999;282(24):2313-2320. doi:10.1001/jama.282.24.2313
  6. Byrne MM, Tannenbaum SL, Glück S, Hurley J, Antoni M. Participation in cancer clinical trials: why are patients not participating? Med Decis Making. 2014;34(1):116-126. doi:10.1177/0272989X13497264
  7. Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol. 2012;30(11):1160-1177. doi:10.1200/JCO.2011.39.5509
  8. Casey M, Odhiambo L, Aggarwal N, Shoukier M, Islam KM, Cortes J. Representation of the population in need for pivotal clinical trials in lymphomas. Blood. 2023;142(9):846-855. doi:10.1182/blood.2023020052
  9. Durant RW, Wenzel JA, Scarinci IC, et al. Perspectives on barriers and facilitators to minority recruitment for clinical trials among cancer center leaders, investigators, research staff, and referring clinicians: Enhancing Minority Participation in Clinical Trials (EMPaCT). Cancer. 2014;120(S7):1097-1105. doi:10.1002/cncr.28574
  10. Ellis S, Geana M, Griebling T, et al. Development, acceptability, appropriateness and appeal of a cancer clinical trials implementation intervention for rural- and minority-serving urology practices. Trials. 2019;20(1):578. Published 2019 Oct 7. doi:10.1186/s13063-019-3658-z
  11. Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361-1367. doi:10.1007/s11606-012-2077-6
  12. Elwyn G, O’Connor A, Stacey D, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ. 2006;333(7565):417. doi:10.1136/bmj.38926.629329.AE
  13. Evans KR, Lewis MJ, Hudson SV. The role of health literacy on African American and Hispanic/Latino perspectives on cancer clinical trials. J Canc Educ. 2012;27(2):299-305. doi:10.1007/s13187-011-0300-5
  14. American Cancer Society Cancer Action Network. Factors Influencing Cancer Disparities. January 11, 2024. https://www.fightcancer.org/policy-resources/factors-influencing-cancer-disparities
  15. Fouad MN, Acemgil A, Bae S, et al. Patient navigation as a model to increase participation of African Americans in cancer clinical trials. JOP. 2016;12(6):556-563. doi:10.1200/JOP.2015.008946
  16. Gouveia R, Cruz VT, Almeida L. Sociodemographic and psychological characteristics influencing patients’ willingness to participate in clinical trials. BMJ Open Qual. 2022;11(4):e002044. doi:10.1136/bmjoq-2022-002044
  17. Gross CP, Filardo G, Mayne ST, Krumholz HM. The impact of socioeconomic status and race on trial participation for older women with breast cancer. Cancer. 2005;103(3):483-491. doi:10.1002/cncr.20792
  18. HealthViewX. 5 Steps to Implementing a Successful Referral Management System. https://www.healthviewx.com/5-steps-to-implementing-a-successful-referral-management-system-a-practical-guide-for-healthcare-organizations/
  19. Hibbard J. Patient Activation and Health Literacy: What’s the Difference? How Do Each Contribute to Health Outcomes. Stud Health Technol Inform. 2017;240:251-262.
  20. Hibbard JH, Greene J, Becker ER, et al. Racial/ethnic disparities and consumer activation in health. Health Affairs. 2008;27(5):1442-1453. doi:10.1377/hlthaff.27.5.1442
  21. Hibbard JH, Mahoney E, Sonet E. Does patient activation level affect the cancer patient journey? Patient Educ Couns. 2017;100(7):1276-1279. doi:10.1016/j.pec.2017.03.019
  22. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Services Research. 2004;39(4p1):1005-1026. doi:10.1111/j.1475-6773.2004.00269.x
  23. Hibbard JH, Tusler M. Assessing activation stage and employing a “next steps” approach to supporting patient self-management. J Ambul Care Manage. 2007;30(1):2-8. doi:10.1097/00004479-200701000-00002
  24. Knelson LP, Cukras AR, Savoie J, et al. Barriers to clinical trial accrual: perspectives of community-based providers. Clinical Breast Cancer. 2020;20(5):395-401.e3. doi:10.1016/j.clbc.2020.05.001
  25. Getz K. Rebooting the Statistic That 5% of Eligible Patients Participate in Clinical Trials. Applied Clinical Trials. 2023;32(3). https://www.appliedclinicaltrialsonline.com/view/rebooting-the-statistic-that-5-of-eligible-patients-participate-in-clinical-trials
  26. Krist AH, Tong ST, Aycock RA, Longo DR. Engaging Patients in Decision-Making and Behavior Change to Promote Prevention. Stud Health Technol Inform. 2017;240:284-302.
  27. Loree JM, Anand S, Dasari A, et al. Disparity of race reporting and representation in clinical trials leading to cancer drug approvals from 2008 to 2018. JAMA Oncol. 2019;5(10):e191870. doi:10.1001/jamaoncol.2019.1870
  28. Manne S, Kashy D, Albrecht T, et al. Knowledge, attitudes, and self-efficacy as predictors of preparedness for oncology clinical trials: a mediational model. Med Decis Making. 2014;34(4):454-463. doi:10.1177/0272989X13511704
  29. Miller SM, Hudson SV, Egleston BL, et al. The relationships among knowledge, self-efficacy, preparedness, decisional conflict, and decisions to participate in a cancer clinical trial. Psychooncology. 2013;22(3):481-489. doi:10.1002/pon.3043
  30. Minas TZ, Kiely M, Ajao A, Ambs S. An overview of cancer health disparities: new approaches and insights and why they matter. Carcinogenesis. 2021;42(1):2-13. doi:10.1093/carcin/bgaa121
  31. Mitchell E, Alese OB, Yates C, et al. Cancer healthcare disparities among African Americans in the United States. Journal of the National Medical Association. 2022;114(3):236-250. doi:10.1016/j.jnma.2022.01.004
  32. Nielsen BK, Mehlsen M, Jensen AB, Zachariae R. Cancer-related self-efficacy following a consultation with an oncologist. Psychooncology. 2013;22(9):2095-2101. doi:10.1002/pon.3261
  33. Ottawa Decision Support Tutorial. https://decisionaid.ohri.ca/odst/pdfs/odst.pdf
  34. Thota R, Hurley PA, Miller TM, et al. Improving access to patient-focused, decentralized clinical trials requires streamlined regulatory requirements: an ASCO research statement. JCO. 2024;42(33):3986-3995. doi:10.1200/JCO.24.00961
  35. Unger JM, Shulman LN, Facktor MA, Nelson H, Fleury ME. National estimates of the participation of patients with cancer in clinical research studies based on Commission on Cancer accreditation data. JCO. 2024;42(18):2139-2148. doi:10.1200/JCO.23.01030
  36. Unger JM, Vaidya R, Hershman DL, Minasian LM, Fleury ME. Systematic Review and Meta-Analysis of the Magnitude of Structural, Clinical, and Physician and Patient Barriers to Cancer Clinical Trial Participation. J Natl Cancer Inst. 2019;111(3):245-255. doi:10.1093/jnci/djy221
  37. Wendler D, Kington R, Madans J, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med. 2005;3(2):e19. doi:10.1371/journal.pmed.0030019