Literature DB >> 25591627

Cancer patient decision making related to clinical trial participation: an integrative review with implications for patients' relational autonomy.

Jennifer A H Bell1, Lynda G Balneaves.   

Abstract

PURPOSE: Oncology clinical trials are necessary for the improvement of patient care as they have the ability to confirm the efficacy and safety of novel cancer treatments and in so doing, contribute to a solid evidence base on which practitioners and patients can make informed treatment decisions. However, only 3-5 % of adult cancer patients enroll in clinical trials. Lack of participation compromises the success of clinical trials and squanders an opportunity for improving patient outcomes. This literature review summarizes the factors and contexts that influence cancer patient decision making related to clinical trial participation.
METHODS: An integrative review was undertaken within PubMed, CINAHL, and EMBASE databases for articles written between 1995 and 2012 and archived under relevant keywords. Articles selected were data-based, written in English, and limited to adult cancer patients.
RESULTS: In the 51 articles reviewed, three main types of factors were identified that influence cancer patients' decision making about participation in clinical trials: personal, social, and system factors. Subthemes included patients' trust in their physician and the research process, undue influence within the patient-physician relationship, and systemic social inequalities. How these factors interact and influence patients' decision-making process and relational autonomy, however, is insufficiently understood.
CONCLUSIONS: Future research is needed to further elucidate the sociopolitical barriers and facilitators of clinical trial participation and to enhance ethical practice within clinical trial enrolment. This research will inform targeted education and support interventions to foster patients' relational autonomy in the decision-making process and potentially improve clinical trial participation rates.

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Mesh:

Year:  2015        PMID: 25591627     DOI: 10.1007/s00520-014-2581-9

Source DB:  PubMed          Journal:  Support Care Cancer        ISSN: 0941-4355            Impact factor:   3.603


  73 in total

1.  Willingness to participate in clinical treatment research among older African Americans and Whites.

Authors:  Diane R Brown; Meral Topcu
Journal:  Gerontologist       Date:  2003-02

2.  Barriers to the participation of African-American patients with cancer in clinical trials: a pilot study.

Authors:  Anjali S Advani; Benjamin Atkeson; Carrie L Brown; Bercedis L Peterson; Laura Fish; Jeffrey L Johnson; Jon P Gockerman; Marc Gautier
Journal:  Cancer       Date:  2003-03-15       Impact factor: 6.860

3.  Patients' willingness to enter clinical trials: measuring the association with perceived benefit and preference for decision participation.

Authors:  H A Llewellyn-Thomas; M J McGreal; E C Thiel; S Fine; C Erlichman
Journal:  Soc Sci Med       Date:  1991       Impact factor: 4.634

Review 4.  Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors.

Authors:  Edward J Mills; Dugald Seely; Beth Rachlis; Lauren Griffith; Ping Wu; Kumanan Wilson; Peter Ellis; James R Wright
Journal:  Lancet Oncol       Date:  2006-02       Impact factor: 41.316

5.  How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials.

Authors:  Warren B Sateren; Edward L Trimble; Jeffrey Abrams; Otis Brawley; Nancy Breen; Leslie Ford; Mary McCabe; Richard Kaplan; Malcolm Smith; Richard Ungerleider; Michaele C Christian
Journal:  J Clin Oncol       Date:  2002-04-15       Impact factor: 44.544

6.  Attitudes, knowledge and barriers to participation in cancer clinical trials among rural and remote patients.

Authors:  Sabe Sabesan; Bjourn Burgher; Petra Buettner; Peter Piliouras; Zulfiquer Otty; Suresh Varma; Darshit Thaker
Journal:  Asia Pac J Clin Oncol       Date:  2010-11-03       Impact factor: 2.601

7.  Barriers to cancer clinical trial participation among Native elders.

Authors:  Donna L LaVallie; Fredric M Wolf; Clemma Jacobsen; Dedra Buchwald
Journal:  Ethn Dis       Date:  2008       Impact factor: 1.847

8.  Representation of African-Americans, Hispanics, and whites in National Cancer Institute cancer treatment trials.

Authors:  H A Tejeda; S B Green; E L Trimble; L Ford; J L High; R S Ungerleider; M A Friedman; O W Brawley
Journal:  J Natl Cancer Inst       Date:  1996-06-19       Impact factor: 13.506

Review 9.  Relational autonomy or undue pressure? Family's role in medical decision-making.

Authors:  Anita Ho
Journal:  Scand J Caring Sci       Date:  2008-03

10.  Barriers to clinical trial participation by older women with breast cancer.

Authors:  M Margaret Kemeny; Bercedis L Peterson; Alice B Kornblith; Hyman B Muss; Judith Wheeler; Ellis Levine; Nancy Bartlett; Gini Fleming; Harvey J Cohen
Journal:  J Clin Oncol       Date:  2003-06-15       Impact factor: 44.544

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  30 in total

1.  Unmet Needs in Severe Asthma Subtyping and Precision Medicine Trials. Bridging Clinical and Patient Perspectives.

Authors:  Salman Siddiqui; Loren C Denlinger; Stephen J Fowler; Praveen Akuthota; Dominick E Shaw; Liam G Heaney; Louise Brown; Mario Castro; Tonya A Winders; Monica Kraft; Scott Wagers; Michael C Peters; Ian D Pavord; Samantha Walker; Nizar N Jarjour
Journal:  Am J Respir Crit Care Med       Date:  2019-04-01       Impact factor: 21.405

2.  Balancing Confounding and Generalizability Using Observational, Real-world Data: 17-gene Genomic Prostate Score Assay Effect on Active Surveillance.

Authors:  Steven Canfield; Michael J Kemeter; Phillip G Febbo; John Hornberger
Journal:  Rev Urol       Date:  2018

3.  Aiming High--Changing the Trajectory for Cancer.

Authors:  Douglas R Lowy; Francis S Collins
Journal:  N Engl J Med       Date:  2016-04-04       Impact factor: 91.245

4.  A clinical trial for patients with acute myeloid leukemia or myelodysplastic syndromes not eligible for standard clinical trials.

Authors:  G Montalban-Bravo; X Huang; K Naqvi; E Jabbour; G Borthakur; C D DiNardo; N Pemmaraju; J Cortes; S Verstovsek; T Kadia; N Daver; W Wierda; Y Alvarado; M Konopleva; F Ravandi; Z Estrov; N Jain; A Alfonso; M Brandt; T Sneed; H-C Chen; H Yang; C Bueso-Ramos; S Pierce; E Estey; Z Bohannan; H M Kantarjian; G Garcia-Manero
Journal:  Leukemia       Date:  2016-10-31       Impact factor: 11.528

5.  Cancer-Related Internet Use and Online Social Networking Among Patients in an Early-Phase Clinical Trials Clinic at a Comprehensive Cancer Center.

Authors:  Goldy C George; Adrianna Buford; Kenneth Hess; Sarina A Piha-Paul; Ralph Zinner; Vivek Subbiah; Christina Hinojosa; Charles S Cleeland; Funda Meric-Bernstam; Elmer V Bernstam; David S Hong
Journal:  JCO Clin Cancer Inform       Date:  2018-12

6.  Characteristics of Participants Enrolled onto a Randomized Controlled Trial of Palliative Care for Patients on Phase I Studies.

Authors:  Betty R Ferrell; Carly L Paterson; Mark T Hughes; Vincent Chung; Marianna Koczywas; Thomas J Smith
Journal:  J Palliat Med       Date:  2017-06-13       Impact factor: 2.947

7.  Oncology clinical trials and insurance coverage: An update in a tenuous insurance landscape.

Authors:  Samilia Obeng-Gyasi; Sheetal M Kircher; Kelsey P Lipking; Benjamin J Keele; Al B Benson; Lynne I Wagner; Ruth C Carlos
Journal:  Cancer       Date:  2019-06-28       Impact factor: 6.860

Review 8.  Social Media and Myeloproliferative Neoplasms (MPN)--Focus on Twitter and the Development of a Disease-specific Community: #MPNSM.

Authors:  Naveen Pemmaraju; Vikas Gupta; Ruben Mesa; Michael A Thompson
Journal:  Curr Hematol Malig Rep       Date:  2015-12       Impact factor: 3.952

9.  Evaluating Adaptation of a Cancer Clinical Trial Decision Aid for Rural Cancer Patients: A Mixed-Methods Approach.

Authors:  Swati Pathak; Nerissa George; Denise Monti; Kathy Robinson; Mary C Politi
Journal:  J Cancer Educ       Date:  2019-08       Impact factor: 2.037

10.  Patient-Reported Out-of-Pocket Costs and Financial Toxicity During Early-Phase Oncology Clinical Trials.

Authors:  Ryan W Huey; Goldy C George; Penny Phillips; Revenda White; Siqing Fu; Filip Janku; Daniel D Karp; Aung Naing; Sarina Piha-Paul; Vivek Subbiah; Apostolia M Tsimberidou; Shubham Pant; Timothy A Yap; Jordi Rodon; Funda Meric-Bernstam; Ya-Chen Tina Shih; David S Hong
Journal:  Oncologist       Date:  2021-04-21
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