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Am J Prev Med. 2018 Feb;54(2):237-247. doi: 10.1016/j.amepre.2017.10.027. Epub 2017 Dec 11.

Engaging Patients in Decisions About Cancer Screening: Exploring the Decision Journey Through the Use of a Patient Portal.

Author information

1
Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, Virginia. Electronic address: swoolf@vcu.edu.
2
Department of Family Medicine and Population Health, Virginia Commonwealth University, Richmond, Virginia.
3
Department of Health Behavior and Policy, Lineberger Comprehensive Cancer Center and Eshelman School of Pharmacy, University of North Carolina, Chapel Hill, North Carolina.
4
Department of Epidemiology and Biostatistics, Temple University, Philadelphia, Pennsylvania.
5
United Network for Organ Sharing, Richmond, Virgina.
6
Department of Biostatistics, Virginia Commonwealth University, Richmond, Virginia.
7
Palo Alto Medical Foundation Research Institute, Palo Alto, California.
8
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, Michigan.

Abstract

INTRODUCTION:

Engaging patients to make informed choices is paramount but difficult in busy practices. This study sought to engage patients outside the clinical setting to better understand how they approach cancer screening decisions, including their primary concerns and their preferences for finalizing their decision.

METHODS:

Twelve primary care practices offering patients an online personal health record invited eligible patients to complete a 17-item online interactive module. Among 11,458 registered users, invitations to complete the module were sent to adults aged 50-74 years who were overdue for colorectal cancer screening and to women aged 40-49 years and men aged 55-69 who had not undergone a recent mammogram or prostate-specific antigen test, respectively.

RESULTS:

The module was started by 2,355 patients and completed by 903 patients. Most respondents (76.8%) knew they were eligible for screening. Preferred next steps were talking to the clinician (76.6%), reading/research (28.6%), and consulting trusted friends/family (16.4%). Priority topics included how much screening improves life expectancy, comparative test performance, and the prevalence/health risks of the cancer. Leading fears were getting cancer/delayed detection (79.2%), abnormal results (40.5%), and testing complications (39.1%), the last referring to false test results, medical complications, or unnecessary treatments. Men eligible for prostate-specific antigen screening were more likely than women eligible for mammography to express concerns about testing complications and to prioritize weighing pros and cons over gut feelings (p<0.05).

CONCLUSIONS:

Although this sample was predisposed to screening, most patients wanted help in finalizing their decision. Many wanted to weigh the pros and cons and expressed fears of potential harms from screening. Understanding how patients approach decisions may help design more effective engagement strategies.

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