Three sessions of a semi-structured focus group were conducted to gain patient feedback on personalized screening for colorectal cancer (CRC).
Individual preferences for how individuals would like to receive notice of their potential risk for colorectal cancer (CRC) varied so much during 3 sessions of a semi-structured focus group that investigators are emphasizing clinicians need to be careful in their communication and use a layered delivery mode for information when introducing personalized screening strategies.
Since 2014, the Netherlands has had a nationwide fecal immunochemical test (FIT)–based CRC screening program, with a measure of 47 mcg Hb/g indicating a positive result.1 Individuals who have a negative result are invited to undergo another test in 2 years, while those with positive results get a referral for a colonoscopy. The present study authors noted potential for a higher risk of CRC detection and of interval CRC if an individual’s fecal hemoglobin (f-Hb) comes in just below the 47 mcg Hb/g cutoff, and they have suggested potential for shorter and longer screening intervals (for those with undetectable levels) as a result.
“It is impossible to address everyone’s needs with respect to risk communication with a single approach,” the study authors wrote in Preventive Medicine Reports2 of the investigation from the Netherlands. “Transparency and public education is required for personalized screening strategies to be acceptable to the public.”
Their study is a subanalysis conducted as part of the PERFECT-FIT trial (Personalised CRC Screening: Effectiveness of Tailored Intervals Based on Prior f-Hb Concentration in a FIT-based Programme). Potential participants had to be aged 55 to 75 years, provide informed consent, have Dutch language proficiency, and have access to a laptop, computer, or iPad/Tablet with camera and microphone.
The study population comprised an equal balance of women and men, with a median (IQR) age of 69 (66-73) years. Their responses in the focus group emerged around 3 themes:
When asked about their views on CRC screening, most participants relayed that they knew it had important benefits—it can lead to early CRC detection and potentially prevent CRC—and of those who had a positive FIT and the follow-up colonoscopy, their experiences were well received. What they didn’t like about CRC screening was the “unpleasant” stool collection, having to pay their deductible, and age 75 being the cutoff for screening eligibility.
Target population engagement concerned the CRC screening information letter and communication channels. Participants expressed their wishes to have the initial letter, which is written in Dutch, to include a leaflet about the program’s website in several languages along with infographics to aid understanding of the program among migrant populations. However, they also considered this letter “insufficient to inform all individuals within the target population,” the authors noted. Suggestions for additional channels included social media videos (in several languages), public media campaigns, billboards, and interviews with community leaders.
Information needs the focus group participants expressed centered on risk communication, costs, presenting information, general practitioner’s role, and views on personalized screening. Some participants expressed their preference to receive detailed information on their risk and their level of f-Hb, and others preferred to know only their risk and their follow-up. Most were unaware that deciding to introduce personalized CRC screening was not cost driven, when debating the benefits of shorter vs longer follow-ups, necessitating more information on the program’s cost aims.
Participants also suggested that when they are getting their results to again use figures or infographics for the different risk profiles. In addition, some preferred to get their results in steps (or, layered delivery); for example, the amount of blood in their stool. Others recommended a public awareness campaign before implementing personalized screening in the country. Another option was to refer patients to their general practitioner, who can break down their results in an understandable way; however, there was a split in opinion on this, with some saying they would reach out and others expressing concern for the GPs’ limited time.
Lastly, for personalized screening, there was consensus on having a shorter follow-up for high-risk patients, but viewpoint differed on longer follow-ups for lower-risk patients. While all agreed that the stool test is not a burden, some saw harm in extending the screening interval because of the risks involved when participating in a screening program vs those who thought a longer follow-up was fine due to their good health.
“The variation is in line with findings of other studies which have shown that the presentation of risk in a single format is not optimal,” the study authors concluded. “Our findings reaffirm that it will be challenging to address everyone’s needs and a layered approach to deliver information on individual’s CRC risk is required. Different formats need to be designed and evaluated in larger cohorts.”
1. Toes-Zoutendijk E, van Leerdam ME, Dekker E, et al. Real-time monitoring of results during first year of Dutch colorectal cancer screening program and optimization by altering fecal immunochemical test cut-off levels. Gastroenterology. 2017;152(4):767-775.e2. doi:10.1053/j.gastro.2016.11.022
2. Toes-Zoutendijk E, de Jonge L, Breekveldt ECH, et al. Personalised colorectal cancer screening strategies: information needs of the target population. Prev Med Rep. 2023;35:102325. doi:10.1016/j.pmedr.2023.102325