Shared Decision Making in Colorectal Cancer Screening: A Scoping Review

Sarina Schrager; Lashika Yogendran; Hunter Wakefield; Leslie Christensen

doi:10.3122/jabfm.2024.240424R1

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Table 1.

Inclusion and Exclusion Criteria

Inclusion Criteria	Exclusion Criteria
Adults (45 to 75)	Older adults (>75 years old)
Average risk	High risk individuals (i.e. family history of colon cancer, history of inflammatory bowel disease, presence of high risk genetic mutations)
English language	Outside of US or Canada
US or Canada	Study about treatment of colon cancer or high risk polyps
Study focused on screening for CRC	Editorials, commentaries, dissertations, conference abstracts
Peer reviewed publication
Discussed the process of decision making

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Table 2.

List of Papers Included in the Scoping Review

Author	Title	Description of the Study	Results	Themes
Brenner 2014¹⁴	Comparing 3 values clarification methods for colorectal cancer screening decision-making:	Online survey of participants from the US and Australia after reviewing screening info and being assigned to a values clarification method (a ranking activity) N = 920 total (451 from the US)	Risk reduction was the most important attribute across all groups. Participants who had not been screened in the past were less likely to choose risk reduction as an attribute compared to those who had been screened. FOBT was the most popular test across all respondents (55.9%)	Importance of knowing test attributes
Brittain 2012⁴⁰	Family Support and Colorectal Cancer Screening Among Urban African Americans	Survey to examine the correlations between family support and influence, cultural identity, CRC beliefs, and their relationship to an informed decision about CRC screening among African Americans and to test the model of an informed decision. N = 129	Participants self-ranked social/family support in 5 domains (emotional, informational, tangible, affectionate support, and positive social interactions): Significant positive correlates (P < .01) of an informed decision were seen with family support and CRC beliefs.	External factors that influence decision making
Dolan 2013¹⁵	Patients' preferences and priorities regarding colorectal cancer screening	Interview consisting of: a) an overview of current colorectal cancer screening recommendations; b) a multi-criteria decision analysis using the Analytic Hierarchy Process (AHP); c) collection of information about the participant including demographics, knowledge of colorectal cancer screening, literacy and numeracy; and d) an evaluation of the AHP-based priority assessment procedure. Participants compared the screening options and judged the relative priorities of the 4 major decision criteria: – Preventing Cancer – Avoiding Side Effects – Minimizing False – Logistics. Logistics was further divided into three sub-criteria: Screening Frequency, Preparation for Screening, and the Screening Procedure. N = 484	Most important criteria priorities for tests: Prevent Cancer (54%), avoid side effects (18%), minimizing false positives (15%), logistics (12%) Logistical priorities: screening procedure (44%), screening frequency (32%), preparation for screening (24%)	Importance of knowing test attributes
Dyer 2019¹⁶	Patient-Reported Needs Following a referral for colorectal cancer screening	Focus groups about (1) patient narratives about their recent experience obtaining a physician recommendation for CRC screening, (2) information needs and barriers to screening following receipt of the recommendation, (3) perspectives on using an electronic patient portal for health-related decision support (both general and CRC screening specific), and (4) reactions to sample program content/messaging N = 45 (7 focus groups)	Participants expressed a desire to know exactly what to expect from a procedure (including the preparation required), alternatives to colonoscopy and their advantages/disadvantages. Also, they wanted simple and clear explanations. Participants wanted to understand the reasoning behind a physician's recommendation (when one is given). They were divided on the willingness to depend on clinician recommendations: half were okay, other half wanted info on all tests. Time restraints for screening discussions: patients desire dedicated time to discuss this.	Importance of knowing test attributes. Impact of relationship with the clinician. Acknowledgment of real emotions surrounding screening.
Ellison, 2011³⁶	Colonoscopy screening information preferences among urban Hispanics	Cross sectional survey and face-to-face interviews to identify preferred sources of CRC screening information among Hispanic urban men and women, the majority of whom are immigrants, low income, and prefer Spanish as their spoken language N = 400	Participants wanted to get information from the following sources: doctor (99%), brochure (84%), TV (80%), someone who speaks their language (80%), family (78%) or another healthcare clinician (76%)	Impact of relationship with the clinician.
Flocke, 2011¹⁷	Patient-rated importance and receipt of information for colorectal cancer screening	Completion of a pre-visit telephone survey, audio-recording of the scheduled office visit and completion of a brief post-visit survey. Participants ranked different components. N = 415 patients and 64 primary care clinicians	Screening purpose (88.7%), test accuracy (85.3%), testing alternatives (83.4%), testing pros/cons (85.8%), and testing process (77.8%) were rated very important by patients. Questions raised by patients (%) in the visit: Logistics (45%, included scheduling, location, needing driver), Screening process (29%, test process, prep, frequency, results / follow-up/next steps), Purpose (9%), alternatives (4%), screening risk/benefits (2%, risk of getting CRC and risk of procedure)	Importance of knowing test attributes.
Hawley, 2014¹⁸	Managed care patients' preferences, physician recommendations, and colon cancer screening	Audio recordings of periodic health exams were reviewed for physician recommendation. Pre-visit survey: patients rated 7 different attributes of screening tests (test accuracy, preparation required, complications/side effects, need for sedation, frequency of the test, degree of pain/discomfort associated with the test, and whether a stool sample was necessary) and indicated which of the attributes listed was the first, second, and third most important when deciding which screening test to use. N = 415	Accuracy was chosen as the most important screening attribute 47% of the time. Followed by risk of complications (16.2%). Test prep (3.7%) and stool collection at home (1.7%).	Importance of knowing test attributes.
Heidenreich 2022¹⁹	Colorectal cancer screening preferences among physicians	Cross-sectional online survey that included discrete choice experiment to elicit preferences of individuals at average risk and physicians. N = 1,249 patients and 400 physicians (200 PCPs and 200 gastroenterologists)	Participants preferred blood tests and at home stool tests over colonoscopy. They also valued regular screening (every year or 3 years). True negative and true positive rates were important for patients, with true negative rates being rated lower between the two. Screening precision was considered more important that frequency of screening and the test type. Older aged individuals in this cohort rated true positive and true negative rates to be more important more often than younger participants. Trade-offs: participants were willing to accept a reduction of the true-positive rate from 100% to 90% (−10.6%) if that was compensated by an increase in the true-negative rate from 80% to 100% (+16.0%). Similarly, they were willing to accept a reduction in the true-negative rate from 90% to 80% (−8.6%) and screening frequency from every year to every 3 years (−1.6%), if the true-positive rate was increased from 80% to 90% (−10.8%)	Importance of knowing test attributes.
Hennelly 2015²⁰	Narrative message targets within the decision-making process to undergo screening colonoscopy among Latinos: a qualitative study	Patient interviews based on grounded theory to assess screening colonoscopy decision-making and storytelling. Participants were asked about their personal beliefs, beliefs of other people in their community, and factual information about CRC and colonoscopy, as knowledge has been associated with completion of colonoscopy in our prior studies. N = 12	Barriers: - Lack of knowledge regarding details of colonoscopy: procedure, if it hurts, its use/purpose - Fear of pain during colonoscopy - Fear of positive test - Other more pressing health issues Facilitators: - physician stating that there should be no pain due to using sedation - benefit of early diagnosis - peace of mind - health seeking behaviors - narratives/stories of others who have completed screening Physician recommendation: All participants agreed that having a physician’s recommendation was essential: most participants said that having a colonoscopy was their physician’s idea, and they would not have independently initiated conversation about CRC screening, citing unfamiliarity with screening	Importance of knowing test attributes. Impact of relationship with the clinician. Acknowledgment of real emotions surrounding screening.
Hoffman 2010²³	Decision-making processes for breast, colorectal, and prostate cancer screening: the DECISIONS survey	Telephone survey. Participants answered a variety of questions about nine common types of medical decisions, including screening for breast, colorectal, and prostate cancer. Participants answered a variety of questions about their knowledge of basic facts about the particular cancer, the importance of various sources of information used in making screening decisions, the processes used in making screening decisions, the communications with their health care clinicians, and the outcomes of the decision-making process. N = 1,082	Sources of information regarding cancer screening: -Health care clinicians, the media, and family members were ranked highly as important sources of information about cancer screening.	Importance of knowing test attributes. Impact of relationship with the clinician.
Hoffman 2014²¹	Lack of shared decision making in cancer screening discussions: results from a national survey	A 2011 national Internet survey of adults aged 50+ years who made cancer screening decisions (breast, colorectal, and prostate) within the previous 2 years. Participants were asked about their perceived cancer risk; how informed they felt about cancer tests; whether their healthcare clinician addressed pros/cons of testing, presented the option of no testing, and elicited their input; whether they were tested; and their confidence in the screening decision. N = 1,134	Reported responses from patients (separated by gender): - Most clinicians discussed reasons to have a test (59% F, 67% M) - Most clinicians did not discuss cons of testing (87% for both) - Most clinicians explained a choice on whether or not to be tested (68% F, 76% M) - Clinicianss also asked if they wanted the test most of the time - Clinicians often expressed opinions about test (77% F, 85% M) - Clinicians often recommended testing (75% F, 81% M) - Around 55% of the respondents report making the decision “mainly on their own” while 38% reported making the decision with their clinician	Importance of knowing test attributes. Impact of relationship with the clinician.
Hoffman 2016²²	Knowledge and values for cancer screening decisions: Results from a national survey	Conducted a national, population-based Internet survey of adults aged 40+ to characterize perceptions about cancer screening, the importance of information sources, cancer screening knowledge, values and preferences for screening, and the most influential drivers of decisions. N = 1,452	Respondents CRC screening values and preferences: - Finding cancer early (F 68%, M 60%) - Knowing whether you have cancer or not (F 75%, M 66%) - importance of choosing a test that does not require annual testing (F 39%, M 28) Reasons for undergoing screening: - Health care clinicians recommendation (F 51%, M 58%) - Personal preference (F 32%, M 31%) Would make same decision again?: - 91% of women and 94% men	Importance of knowing test attributes. Impact of relationship with the clinician.
Honein-AbouHaidar 2016²⁴	Systematic Review and Meta-study Synthesis of Qualitative Studies Evaluating Facilitators and Barriers to Participation in Colorectal Cancer Screening	Review the qualitative literature and explore factors that determine the decision to participate in colorectal cancer screening. Also explored factors influencing screening in groups with previously reported low colorectal cancer screening participation (ethnic minorities, patients with low SES) and in men and women. N = 94 studies included	Facilitators: - awareness of CRC risk and importance of screening - purpose of screening - clinician recommendation - Positive attitude toward screening is related to peace of mind, comfort/ease of some tests - motivators for screening include having a friend or family member diagnosed with CRC Barriers: - Lack of awareness or recommendation - fear of cancer and treatment; “it's inevitable” - embarrassment of test (ex. colonoscopy scoping, handling stool) - logistics - scheduling, other health concerns, transport - cultural/SES- health literacy, health beliefs, language barrier, getting off work, other Modifiers: - education - physician recommendation and explanation	External factors that influence decision making. Importance of knowing test attributes. Impact of relationship with clinician. Acknowledgment of real emotions surrounding screening.
Hyams 2021²⁵	Evaluating preferences for colorectal cancer screening in individuals under age 50 using the Analytic Hierarchy Process	Survey with hierarchy choices to identify preferences for CRC screening strategies and to assess preferences for key characteristics of screening modalities. N = 247	Criteria ranking: test effectiveness was more important than features of the test (complications, convenience, procedure, prep) which was more important than screening plan (follow-up, frequency) Frequency of the test and follow up needed were nearly equal in importance. Test ratings: - colonoscopy had best effectiveness and screening plan ratings - FIT had favored test features (easy to do prep/procedure/convenience wise)	Importance of knowing test attributes.
Imaeda 2010²⁶	What is most important to patients when deciding about colorectal screening?	Survey to assess patient experiences with a Maximum Differences Scaling (MDS) tool for eliciting values about CRC screening test characteristics and determine whether patients vary in how they prioritize test characteristics and whether this variation relates to test preferences. N = 92	Top 3 attributes: sensitivity of the test, risk of a tear, need for a second test Older individuals concerned with sedation. Other considerations: sedation, pain risk, colon prep, stool handling, rectal exam / insertion, scheduling (ride, work) Colonoscopy was an overwhelming favorite (62%), colon capsule (23%), CT colonography (10%), FOBT (4%). Those choosing colonoscopy assigned greater importance to sensitivity of screening test.	Importance of knowing test attributes.
Kiviniemi 2018³⁴	Decision-making and socioeconomic disparities in colonoscopy screening in African Americans	Surveyed participants regarding perceived benefits and barriers to colonoscopy, attitudes, self-efficacy, fear of colonoscopy, CRC knowledge, SES, and screening behavior. N = 1,841	Higher education and income was associated with perceived benefits to screening and greater knowledge of CRC/screening.	Importance of knowing test attributes. External factors that influence decision making.
Ko 2014²⁷	Cultural and linguistic adaptation of a multimedia colorectal cancer screening decision aid for Spanish-speaking Latinos	Using focus groups, researchers sought to describe the adaptation of a current CRC decision aid into Spanish. N = 30 in 4 focus groups	Barriers: - fear/embarrassment: language barriers, colonoscopy invasiveness - machismo/masculinity: homosexual connotation with some men regarding colonoscopy Facilitators: - participants preferred to see the person in the video (not narrated) and liked personalism in those explaining test choices - family members being viewed in the decision aid to show that patients perform the screening to be around for their families - seeing individuals who were Hispanic in the aid (who look like you) Participants also desired knowing the costs of tests and needed follow-up.	External factors that influence decision making. Importance of knowing test attributes. Acknowledgment of real emotions surrounding screening.
Molokwu 2017⁴¹	Decision-Making Preferences Among Older Hispanics Participating in a Colorectal Cancer (CRC) Screening Program	Decision making style was assessed using the Control Preferences Scale. Questions addressed general beliefs about the patients’ preferences. N = 780	Less acculturated individuals (more Spanish speaking at home) were less likely to prefer an active role. Those recruited in a clinic setting were more likely to prefer a collaborative role than those recruited from community. Married individuals were more likely to prefer active/collaborative role compared to those that are unmarried. No significant results for preferred role for educational differences, health status, regular doctor, gender, or income level.	External factors influence decision making.
Nagelhout 2017²⁸	Barriers to Colorectal Cancer Screening in a Racially Diverse Population Served by a Safety-Net Clinic	Participants were asked to complete a self-report questionnaire assessing barriers to, awareness of, and occurrence of clinician recommendation for CRC screening. Barriers were assessed using a list of potential barriers (operationalized as yes/no responses) for colonoscopy and blood stool test, separately. N = 197	Barriers to colonoscopy: - Fear of results (28%) - unable to leave work for appt (27%) - being unaware of the need of colonoscopy (25%) - no clinician recommendation (25%) - Hispanics: lack of clinician trust (51%); also reported more barriers than White Individuals.; also less likely to be aware of what colonoscopy and FIT testing are - Pacific Islanders were less likely than white individuals. to be aware of what colonoscopy is and were less likely to have family members who have had CRC Clinician recommendation: - 16.2% report ever receiving a clinician recommendation - Hispanics 76% less likely to receive a recommendation compared to white participants - recommendation was associated w/ greater completion rates of screening	External factors that influence decision making. Importance of knowing test attributes. Impact of relationship with clinician. Acknowledgment of real emotions surrounding screening.
Pignone 2012²⁹	Conjoint analysis versus rating and ranking for values elicitation and clarification in colorectal cancer screening	Eligible participants were given basic information about CRC screening and six attributes of CRC screening tests, then randomized to complete either a choice-based conjoint analysis with 16 discrete choice tasks or a rating and ranking task. N = 104	Conjoint analysis group rankings: - most important attributes in order of importance were ability to reduce CRC incidence/mortality, the nature and frequency of the test, potential complications and cost. Rating and ranking group: Overall, ability to reduce CRC incidence/mortality was most important feature, followed by costs and discomfort.	Importance of knowing test attributes.
Redwood 2019³⁰	Alaska Native Patient and Clinician Perspectives on the Multitarget Stool DNA Test Compared with Colonoscopy for Colorectal Cancer Screening	Survey to determine the feasibility and application of MT-sDNA; patient and clinician barriers to MT-sDNA and colonoscopy. N = 1,616 patients and 87 clinicians	42% of patients stated they had never been screened, reasons: - never thought about it 46% - no symptoms 28% - did not know they needed it 21% - no doctor suggestion 25% - 7% embarrassment; about the same for “haven't gotten to it” Barriers to colonoscopy (have had it done): - Prep with laxatives 51% - travel 47% - fear of injury 36% - discomfort 34% - fear of pain 32% Barriers to colonoscopy (haven't had it done): - fear of pain 65% - discomfort 63% - travel 60% - colon prep 57% - fear of injury 49% The top colonoscopy barriers overall included travel (44%), preparation for colonoscopy (40%), fear of pain (35%), discomfort with a tube in their rectum (34%), and fear of injury (30%). Other barriers were anesthesia, needing to take off work, and finding a ride. MT-sDNA had fewer barriers to completion: - belief that colonoscopy was better (56%) - discomfort collecting stool (32%) - needing private place to perform test (29%) - having to perform test every 3 years (27%) - embarrassment (18%) Unscreened patients and younger patients were more likely to prefer MT-sDNA.	External factors that influence decision making. Importance of knowing test attributes. Impact of relationship with clinician. Acknowledgment of real emotions surrounding screening.
Rogers 2022³⁹	Psychosocial determinants of colorectal Cancer screening uptake among African-American men: understanding the role of masculine role norms, medical mistrust, and normative support	Focus groups led by principal investigators. Recruited participants through ads and community partners. N = 84 (11 focus groups)	2 greatest barriers: masculine norms and medical mistrust. - masculine norms: stigma of homosexuality from scoping, invasiveness (rectal exam); needing to be a clinician for the family; and fear of a positive test - medical mistrust: historical malpractice, lack of a strong patient-clinician relationship Greatest facilitator of screening: Support via family or social groups. - family and community groups who discuss screening, share experience, and recommendation	External factors that influence decision making. Acknowledgment of real emotions surrounding screening.
Ruggieri 2013³¹	Perceived colonoscopy barriers and facilitators among urban African American patients and their medical residents	Surveyed patients and third-year resident physicians who received care or who worked in a general internal medicine clinic regarding beliefs, risks, benefits, and barriers they perceived to be associated with colonoscopy screening. N = 102 patients and 29 3^rd year residents.	Barriers to colonoscopy: - pain, fear, and concern for complication were all important - less important factors included cost, feeling other options were better, finding someone to care for family Facilitators for colonoscopy: - highly rated… colonoscopy is good for early detection, less frequent screening, accuracy, ability to remove polyps - another important factor for patients was peace of mind Other: - a trusted physician recommendation is important - some did not prefer screening because cancer is “God's will”	External factors that influence decision making. Importance of knowing test attributes. Impact of relationship with the clinician. Acknowledgment of real emotions surrounding screening.
SchroyIii 2011³²	The impact of a novel computer-based decision aid on shared decision making for colorectal cancer screening: A randomized trial	Before the visit, participants were given either a decision aid or decision aid plus personalized risk assessment or no information (control arm). Outcome measures were patient preferences, knowledge, and satisfaction with decision making process. Subsequently, clinicians discussed screening during the visit and recorded preferences. Satisfaction was recorded in post-visit surveys. N = 665	Colonoscopy was most often preferred (59%), with the most common reasoning being test accuracy (81%). FOBT was chosen by 26%, with patients identifying concerns about discomfort (31%), inconvenience (23%), and bowel preparation (18%) as reasons (to not choose colonoscopy).	Importance of knowing test attributes.
Schwartz 2019³⁵	Impact of including quantitative information in a decision aid for colorectal cancer screening: A randomized controlled trial	Participants viewed either a verbal decision aid or a quantitative decision aid. Baseline survey and post-intervention survey. Measures included perceived risk of CRC, benefits and barriers, screening intent, decision conflict and test choice. N = 668	Quantitative information did not affect patient attitudes.	Importance of knowing test attributes.
Wortley 2014³³	Assessing stated preferences for colorectal cancer screening: a critical systematic review of discrete choice experiments	Systematic review/meta-analysis. Studies screened evaluated stated preferences and choice experiments in decision making. N = 9 studies included.	Reported that the studies included were not all uniform in how they described attributes, but they tried to summarize. Important attributes from studies: - accuracy and clinical effectiveness are influential - screening interval - sensitivity more important than specificity - process and prep; pain - cost Least influential attributes from studies: - test interval - location of test - pain, specificity, cost	Importance of knowing test attributes.
Wunderlich 2010³⁷	Inconsistencies in patient perceptions and observer ratings of shared decision making: the case of colorectal cancer screening	Audio-recordings of primary care visits were observer-coded for elements of SDM. A post-visit patient survey assessed patient-reported decision-making processes and relational communication during the visit. Association of patient-reported SDM with observer-rated elements of SDM, as well as patient, physician and relational communication factors were evaluated using generalized estimating equations. N = 363	Pre-survey data: - 70% of patients preferred to share a decision with their clinician regarding preventative health decisions; 18% wanted to make a decision themselves after considering physician input Communication: - relational communication with their physician was positive more often for those who reported sharing the decision - patients who reported SDM reported that the following occurred more often in their discussions compared to patients who reported no SDM: clinician was interested in talking to me, seemed to care if I liked them, was sincere, willing to listen, honest, wanted to cooperate, was open to my ideas.	Impact of relationship with the clinician.
Zhu 2021³⁸	Barriers to utilization of three colorectal cancer screening options - Data from a national survey	Phone survey. Participants self-reported use of each of the CRC screening options. Participants who reported they had not completed screening using a particular CRC screening option were asked about the barriers to utilization of that screening option. N = 1,595	Those who had not been screened by any of the options: - most common barrier was lack of knowledge - lack of clinician recommendation was second most common, followed by lack of access Those who had performed colonoscopy, but no stool tests: - lack of clinician recommendation was most cited barrier - lack of knowledge was second most common Those who had never performed colonoscopy: - Top barrier was psychosocial burden, followed by lack of clinician recommendation - lack of knowledge and suboptimal access followed Stool tests were seemingly not affected by psychosocial barriers or access.	External factors that influence decision making. Importance of knowing test attributes. Impact of relationship with the clinician. Acknowledgment of real emotions surrounding screening.