Development and pilot-testing of a colorectal cancer screening decision aid for individuals with varying health literacy levels

Objective: Making an informed decision about colorectal cancer screening requires health literacy. Our aim was to develop and pilot-test a computer-based decision aid to support informed decision making about whether or not to participate in colorectal cancer screening for individuals with varying health literacy levels in the Netherlands. Methods: First, we designed and adapted the decision aid prototype among 25 individuals with low (n = 10) and adequate (n = 15) health literacy. Second, we used a before/after study to assess changes in knowledge, attitude, intention, decisional conflict, deliberation, anxiety and risk perception in an online survey among 81 individuals eligible for colorectal cancer screening with low (n = 35) and adequate (n = 46) health literacy. Results: The decision aid was acceptable, comprehensible, reduced decisional conflict, increased deliberation and improved knowledge about colorectal cancer screening, but not about colorectal cancer, among individuals with adequate and low health literacy. Usability was slightly higher for participants with adequate health literacy compared to those with low health literacy. Conclusion: The decision aid is promising in supporting informed decision making about colorectal cancer screening, also among individuals with lower health literacy. Practice implications: Further refinement of interactive features, such as videos, animations and the values clarification exercise, is needed to increase the usability of the decision aid

Views of patients and parents of children with genetic disorders on population-based expanded carrier screening

Objective Faster and cheaper next generation sequencing technologies have enabled expansion of carrier screening for recessive disorders, potentially facilitating population-based implementation regardless of ancestry or family history. Little is known, however, about the attitudes regarding population-based carrier screening among families with genetic disorders. This study assessed views among parents and patients with a recessive disorder and parents of children with Down syndrome (DS) on expanded carrier screening (ECS). Method In total, 85 patients with various recessive disorders, 110 parents of a child with a recessive disorder and 89 parents of a child with DS participated in an online survey in the Netherlands. Severity of recessive disorders was classified as mild/moderate or severe/profound. Results The majority of the (parents of) patients with a recessive disorder had a positive attitude towards population-based ECS, including screening for their own or their child's disorder. DS parents were significantly less positive towards ECS. Subgroup analyses showed that the severity of the disorder, rather than being a patient or parent, influences the attitudes, beliefs and intention to participate in ECS. Conclusion Our findings have important implications for future implementation initiatives as they demonstrate the different perspectives from people with experiential knowledge with genetic disorders

What can We Learn From High-Performing Screening Programs to Increase Bowel Cancer Screening Participation in Australia?

Funding Information: This work was supported by the University of Melbourne, Melbourne School of Population and Global Health, Human Ethics Advisory Group. Project title: “Consultation to understand international differences in bowel cancer screening participation,” ID 2057312.1 Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by Engagement Research Funding from the Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Australia. Publisher Copyright: © The Author(s) 2022.Background: Colorectal cancer (CRC) is the second most diagnosed cancer in men and women and second most common cause of cancer death in Australia; Australia’s CRC incidence and mortality are among the world’s highest. The Australian National Bowel Cancer Screening Program began in 2006; however, only 33% of those approached for the first time by the Program between 2018 and 2019 returned the kit. Of the 5.7 million kits sent during this period, only 44% were returned. Our aim was to identify practices and features of national bowel cancer screening programs in countries with similar programs but higher screening participation, to identify potential interventions for optimising Australian CRC screening participation. Methods: We searched published and grey literature for CRC screening programs reporting at least 50% screening participation using postal invitation and free return of iFOBT home kits. Interviews were conducted with cancer registry staff and academic researchers, focused on participant and practitioner engagement in screening. Results: National programs in Netherlands, Scotland, Denmark, and Finland reported over 50% screening participation rates for all invitation rounds. Shared characteristics include small populations within small geographic areas relative to Australia; relatively high literacy; a one-sample iFOBT kit; national registration systems for population cancer screening research; and screening program research including randomised trials of program features. Conclusions: Apart from the one-sample kit, we identified no single solution to persistent Australian low uptake of screening. Research including randomised trials within the program promises to increase participation. Impact: This screening program comparison suggests that within-program intervention trials will lead to increased Australian screening participation.Peer reviewe

How narratives influence colorectal cancer screening decision making and uptake: A realist review

Background: Although narratives have been found to affect decisions about preventive behaviours, including participation in cancer screening, the underlying mechanisms of narratives remain unclear. Objective: The purpose of this study was to summarize and synthesize existing literature on narrative interventions in the context of colorectal cancer screening. Our main research question was as follows: How, when and for whom do narratives work context of decision making about colorectal cancer screening participation?. Methods: We undertook a realist review to collect evidence on narratives in the context of colorectal cancer screening. A search of the literature was performed in Embase, MEDLINE/PubMed, Cinahl and PsycINFO. We included empirical evaluations (qualitative or quantitative) of narrative interventions. In total, 15 studies met the inclusion criteria. A content-based taxonomy of patient narrative types in decision aids formed the basis for our initial programme theory. Main result: We identified four mechanisms: (a) process narratives that address perceived barriers towards screening lead to improved affective forecasting, (b) experience narratives that demonstrate the screening procedure lead to increased self-efficacy, (c) experience narratives that depict experiences from similar others lead to more engagement and (d) outcome narratives that focus on outcomes of colorectal cancer (CRC) screening decision decrease or increase fear of colorectal cancer. The evidence was limited on which narrative type may facilitate or bias informed decision making in colorectal cancer screening. Discussion and conclusion: The findings indicate the importance of more detailed descriptions of narrative interventions in order to understand how mechanisms may facilitate or bias informed decision making in colorectal cancer screening

Knowledge, attitudes and beliefs regarding colorectal cancer screening among ethnic minority groups in the Netherlands - a qualitative study

Research has shown that ethnic minority groups are less likely to participate in colorectal cancer (CRC) screening than the majority population and hence less likely to be diagnosed at an early stage when treatment is potentially more successful. To explore knowledge, attitudes and beliefs regarding CRC and CRC screening among ethnic minority groups in the Netherlands. We conducted qualitative interviews with 30 first-generation immigrants born in Turkey, Morocco and Surinam. We based the topic guide on the health belief model. Framework analysis was used to analyse our data. Although knowledge of CRC and CRC screening was limited, all respondents felt susceptible to CRC. CRC screening was perceived to mainly benefit those individuals with poor health and symptoms. Although most respondents had a positive attitude towards CRC screening, knowledge about its potential harms was limited and self-efficacy to participate was low. Adult children acted as important mediators in providing access to information. The language barrier and low literacy formed serious barriers to informed participation in CRC screening. To ensure that all eligible individuals, including ethnic minority groups, have equal opportunities to informed participation in screening, targeted communication strategies should be developed, such as oral and visual channels, and face-to-face communication in the mother tongue. This will help ethnic minority groups to make an informed decision about participation in CRC screenin

Making the BEST decision-the BESTa project development, implementation and evaluation of a digital Decision Aid in Swedish cancer screening programmes- a description of a research project

BACKGROUND: Sweden has a long tradition of organized national population-based screening programmes. Participation rates differ between programmes and regions, being relatively high in some groups, but lower in others. To ensure an equity perspective on screening, it is desirable that individuals make an informed decision based on knowledge rather than ignorance, misconceptions, or fear. Decision Aids (DAs) are set to deliver information about different healthcare options and help individuals to visualize the values associated with each available option. DAs are not intended to guide individuals to choose one option over another. The advantage of an individual Decision Aid (iDA) is that individuals gain knowledge about cancer and screening by accessing one webpage with the possibility to communicate with health professionals and thereafter make their decision regarding participation. The objective is therefore to develop, implement and evaluate a digital iDA for individuals invited to cancer screening in Sweden. METHODS: This study encompasses a process-, implementation-, and outcome evaluation. Multiple methods will be applied including focus group discussions, individual interviews and the usage of the think aloud technique and self-reported questionnaire data. The project is based on The International Patient Decision Aid Standards (IPDAS) framework and the proposed model development process for DAs. Individuals aged 23-74, including women (the cervical-, breast- and CRC screening module) and men (the CRC screening module), will be included in the developmental process. Efforts will be made to recruit participants with self-reported physical and mental limitations, individuals without a permanent residence and ethnic minorities. DISCUSSION: To the best of our knowledge, the present study is the first attempt aimed at developing an iDA for use in the Swedish context. The iDA is intended to facilitate shared decision making about participation in screening. Furthermore, the iDA is expected to increase knowledge and raise awareness about cancer and cancer screening. PATIENT OR PUBLIC CONTRIBUTION: Lay people are involved throughout the whole development and implementation process of the digital DA. TRIAL REGISTRATION: NCT05512260

The role of health literacy in explaining the relation between educational level and decision making about colorectal cancer screening

Little is known about why educational inequalities exist in informed decision making in colorectal cancer (CRC) screening. Insight into the role and impact of health literacy is essential for intervention development. This study investigates associations between health literacy and informed decision making in CRC screening and explores to what extent health literacy mediates the association between education and informed decision making in CRC screening. In total, 696 individuals eligible for CRC screening (55–75 years of age) were recruited from online panels and filled in an online questionnaire at T0 (n = 696), T1 (n = 407) and T2 (n = 327). A hypothetical mediation model was tested using structural equation modelling. Outcomes included CRC knowledge, CRC screening knowledge, attitude, injunctive norm, descriptive norm, risk perception, self-efficacy, decisional conflict and decisional certainty. Health literacy domains included Comprehension, Application, Numeracy and Communication. Comprehension, Application and Numeracy, were found to mediate the association between education and knowledge about CRC and CRC screening, injunctive norm, descriptive norm, decisional conflict and decisional certainty. In light of these findings, targeting multiple health literacy domains in decision-support interventions is essential for facilitating informed decision making in CRC screening

Validation of the short assessment of health literacy (SAHL-D) and short-form development: Rasch analysis

Background: Accurate measurement of health literacy is essential to improve accessibility and effectiveness of health care and prevention. One measure frequently applied in international research is the Short Assessment of Health Literacy (SAHL). While the Dutch SAHL (SAHL-D) has proven to be valid and reliable, its administration is time consuming and burdensome for participants. Our aim was to further validate, strengthen and shorten the SAHL-D using Rasch analysis. Methods: Available cross-sectional SAHL-D data was used from adult samples (N = 1231) to assess unidimensionality, local independence, item fit, person fit, item hierarchy, scale targeting, precision (person reliability and person separation), and presence of differential item functioning (DIF) depending on age, gender, education and study sample. Results: Thirteen items for a short form were selected based on item fit and DIF, and scale properties were compared between the two forms. The long form had several items with DIF for age, gender, educational level and study sample. Both forms showed lower measurement precision at higher health literacy levels. Conclusions: The findings support the validity and reliability of the SAHL-D for the long form and the short form, which can be used for a rapid assessment of health literacy in research and clinical practice

Dutch citizens of Turkish origin who utilize healthcare services in Turkey: a qualitative study on motives and contextual factors

Background: Dutch residents of Turkish origin frequently utilize healthcare in Turkey. Methods: To investigate their motives for doing so, we conducted a qualitative study among these healthcare users using semi-structured interviews. We complemented this with informal conversations with Turkish healthcare providers and observations at the registration offices and waiting rooms of outpatient clinics in several Turkish hospitals. Results: Respondents believed their perceived needs for referral to specialist care and diagnostic assessments to quantify their health were not being met in the Netherlands. Conclusions: These mismatches in expectations of what constitutes "good care" led to dissatisfaction with Dutch primary care. Consequently, respondents utilized healthcare in Turkey if the opportunity arose, and were encouraged in this by their social networks. Establishing cross-border communication between healthcare providers is necessary, because there is currently no continuity of care for cross-border patients

Health literacy skills for informed decision making in colorectal cancer screening: Perceptions of screening invitees and experts.

The process of informed decision making (IDM) requires an adequate level of health literacy. To ensure that all individuals have equal opportunity to make an informed decision in colorectal cancer (CRC) screening, it is essential to gain more insight into which health literacy skills are needed for IDM. Our aims were (i) to explore how individuals make a decision about CRC screening and (ii) to explore which skills are needed for IDM in CRC screening and (iii) to integrate these findings within a conceptual framework