Top

Published in:

01-06-2012

Cancer Patients' Fears Related to Clinical Trial Participation: A Qualitative Study

Authors: Gwendolyn P. Quinn, Alexis Koskan, Kristen J. Wells, Luis E. Gonzalez, Cathy D. Meade, Christie L. Pratt Pozo, Paul B. Jacobsen

Published in: Journal of Cancer Education | Issue 2/2012

Abstract

Patient-related barriers have hindered cancer patients' abilities to participate in the decision-making processes to participate in clinical trials. However, little is known about patients' emotional barrier of fear and how physicians influence this barrier. We conducted 48 in-depth interviews with cancer patients to determine their knowledge and attitudes about participating in clinical trials, transcribed interviews verbatim, and qualitatively analyzed the transcripts using content analysis. For the purpose of this manuscript, we focused on findings related to the role of the emotional barrier of fear in cancer patients' perceptions of participating in clinical trials. The majority of cancer patients (n = 40, 83.3%) discussed fears surrounding clinical trials, particularly as it related to cancer diagnosis, clinical trial participation, and fear of the unknown. In conclusion, providers might consider addressing the role of fear in patients' considering participating in a clinical trial.

Quinn GP, Bell BA, Bell MY, Caraway VD, Conforte D, Graci LB, Linda B, Powell-Stafford VL, Sapp AL, Shimizu CO, Vaughn EJ, Williams C, Bepler G (2007) The guinea pig syndrome: improving clinical trial participation among thoracic patients. J Thorac Oncol 2(3):191–196PubMedCrossRef

Lara PN, Higdon R, Lim N, Kwan K, Tanaka M, Lau DHM, Wun T, Welcorn J, Meyers FJ, Christensen S, O'Donnell R, Richman C, Scudder SA, Tuscano J, Gandara DR, Lam KS (2001) Prospective evaluation of cancer clinical trial accrual patterns: identifying potential barriers to enrollment. J Clin Oncol 19(6):1728–1733PubMed

Waljee JF, Rogers MAM, Alderman AK (2007) Decision aids and breast cancer: do they influence choice for surgery and knowledge of treatment options? J Clin Oncol 25(9):1067–1073PubMedCrossRef

Wright JR, Whelan TJ, Schiff S, Dubois S, Crooks D, Haines PT, DeRosa D, Robers RS, Gafni A, Prtichard K, Levine MN (2004) Why cancer patients enter randomized clinical trials: exploring the factors that influence their decision. J Clin Oncol 22(21):4312–4318PubMedCrossRef

Meropol NJ, Buzaglo JS, Millard J, Damjanov N, Miller SM, Ridgway C, Ross EA, Sprandio JD, Watts P (2007) Barriers to clinical trial participation as perceived by oncologists and patients. J Natl Compr Canc Netw 5(8):753–762

Erblich J, Montgomery GH, Valdimarsdottir HB, Cloitre M, Bovbjerg DH (2003) Biased cognitive processing of cancer-related information among women with family histories of breast cancer: evidence from a cancer Stroop task. Health Psychol 22(3):235–244PubMedCrossRef

Wagener D (2000) Communication with the cancer patient: patient-physician communication: a clinician's view. Ann Oncol 11(suppl 3):57–51CrossRef

McWilliam CL, Brown JB, Stewart M (2000) Breast cancer patients' experiences of patient-doctor communication: a working relationship. Patient Educ Couns 39(2–3):191–204PubMedCrossRef

Quinn GP, Pratt CL, Bryant-George K, Caraway VD, Paternoster B, Roldan T, Shaffer A, Shimizu CO, Vaughn EJ, Williams C, Bepler G (2010) Lung cancer patients' decisions about clinical trials and the theory of planned behavior. J Cancer Educ 26:641–648CrossRef

10.

Beaver K, Jones D, Susnerwala S, Craven O, Tomlinson M, Witham G, Luker KA (2005) Exploring the decision making preferences of people with colorectal cancer. Health Expect 8(2):103–113PubMedCrossRef

11.

De Haes H (2006) Dilemmas in patient centeredness and shared decision making: a case for vulnerability. Patient Educ Couns 62(3):291–298PubMedCrossRef

12.

Leydon GM, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M, McPherson K (2000) Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 320(7239):909–913PubMedCrossRef

13.

Fraenkel L, McGraw S (2007) What are the essential elements to enable patient participation in medical decision making? J Gen Intern Med 22(5):614–619PubMedCrossRef

14.

Roter DL, Erby LH, Larson S, Ellington L (2007) Assessing oral literacy demand in genetic counseling dialogue: preliminary test of a conceptual framework. Soc Sci Med 65(7):1442–1457PubMedCrossRef

15.

Venetis MK, Robinson JD, Turkiewicz KLP, Allen M (2009) An evidence base for patient-centered cancer care: a meta-analysis of studies of observed communication between cancer specialists and their patients. Patient Educ Couns 77(3):379–383PubMedCrossRef

16.

Strauss AL, Corbin JM (1998) Basics of qualitative research: techniques and procedures for developing grounded theory. Sage Publications, Inc., Thousand Oaks

17.

Dubayova T, van Dijk JP, Nagyova I, Rosenberger J, Havlikova E, Gdovinova Z, Middel B, Groothoff JW (2010) The impact of the intensity of fear on patient's delay regarding health care seeking behavior: a systematic review. Int J Public Health 55(5):459–468PubMedCrossRef

18.

Ellis PM, Butow PN, Tattersall MHN, Dunn SM, Houssami N (2001) Randomized clinical trials in oncology: understanding and attitudes predict willingness to participate. J Clin Oncol 19(15):3554–3561PubMed

19.

McCann SK, Campbell MK, Entwistle VA (2010) Reasons for participating in randomised controlled trials: conditional altruism and considerations for self. Trials 11(1):31PubMedCrossRef

20.

Schaefer KM, Ladd E, Gergits M, Gyauch L (2001) Backing and forthing: the process of decision making by women considering participation in a breast cancer prevention trial. Oncol Nurs Forum 28(4):703–709PubMed

21.

Schwartz B (2004) The tyranny of choice. Sci Am Mind 14(5):44–49

22.

Comis RL, Miller JD, Aldigé CR, Krebs L, Stoval E (2003) Public attitudes toward participation in cancer clinical trials. J Clin Oncol 21(5):830–835PubMedCrossRef

23.

Whitney SN, McGuire AL, McCullough LB (2004) A typology of shared decision making, informed consent, and simple consent. Ann Intern Med 140(1):54–60PubMed

24.

Kenny P, Quine S, Shiell A, Cameron S (1999) Participation in treatment decision making by women with early stage breast cancer. Health Expect 2(3):159–168PubMedCrossRef

25.

Roussi P, Sherman KA, Miller S, Buzaglo J, Daly M, Taylor A, Ross E, Godwin A (2010) Enhanced counselling for women undergoing BRCA1/2 testing: impact on knowledge and psychological distress–results from a randomised clinical trial. Psychol Health 25(4):401–415PubMedCrossRef

Title: Cancer Patients' Fears Related to Clinical Trial Participation: A Qualitative Study
Authors: Gwendolyn P. Quinn
Alexis Koskan
Kristen J. Wells
Luis E. Gonzalez
Cathy D. Meade
Christie L. Pratt Pozo
Paul B. Jacobsen
Publication date: 01-06-2012
Publisher: Springer-Verlag
Published in: Journal of Cancer Education / Issue 2/2012
Print ISSN: 0885-8195
Electronic ISSN: 1543-0154
DOI: https://doi.org/10.1007/s13187-012-0310-y

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Please log in to get access to this content

Other articles of this Issue 2/2012

Readers’ Theatre: A Communication Tool for Colorectal Cancer Screening

Patients’ View of Their Preoperative Education for Radical Prostatectomy: Does It Change After Surgery?

High Knowledge About Obesity and its Health Risks, with the Exception of Cancer, Among Mexican Individuals

Oncologists’ Confidence in Knowledge of Fertility Issues for Young Women with Cancer

Brief Report: Ultraviolet Radiation Exposure, Considering Acculturation Among Hispanics (Project URECAH)

Can You See What They Are Saying? Breast Cancer Images and Text in Canadian Women’s and Fashion Magazines

Keynote webinar | Spotlight on antibody–drug conjugates in cancer