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.

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 health literacy domains for informed decision making about colorectal cancer screening using classical test theory and item response theory.

OBJECTIVE: To construct and validate a computer-based and performance-based instrument to assess health literacy skills for informed decision making in colorectal cancer screening among screening invitees. METHODS: An instrument was constructed based on a conceptual framework of health literacy skills in colorectal cancer screening and findings from an expert survey. The instrument was field-tested among individuals with low health literacy (n = 28). Its validity and reliability was assessed using classical test theory and item response theory approaches in an online panel of colorectal cancer screening invitees (n = 696). RESULTS: Confirmatory factor analysis confirmed four separate factors: Comprehension, Application, Numeracy and Communication. A fifth domain (Appraisal) demonstrated poor reliability and validity and was omitted in further analyses. Internal consistency (Cronbach's alpha > 0.6 for the four scales) was acceptable and test-retest reliability was moderate. The four factors were measurement invariant for age, sex and educational level. CONCLUSION: The computer-based measures were acceptable for self-administration. The constructed multidimensional health literacy instrument showed acceptable measurement properties. PRACTICE IMPLICATIONS: Our findings imply that the computer-based instrument can be used for the development of interventions to support informed decision making about colorectal cancer screening among individuals with varying health literacy levels. Further research is needed for optimizing performance-based measurement of the Appraisal and Communication domains.

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 = 15) and adequate (n = 10) 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.

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

BACKGROUND: 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. METHODS: We conducted 3 focus groups with individuals eligible for CRC screening (n = 22) and 2 focus groups with experts in the field of health literacy, oncology and decision making, including scientific researchers and health-care professionals (n = 17). We used framework analysis to analyse our data. RESULTS: We identified and specified ten health literacy skills, which varied from the ability to read and understand CRC screening information to the ability to weigh up pros and cons of screening for personal relevance. The skills were linked to 8 decision-making stages in CRC screening within a conceptual framework. We found differences in perceptions between screening invitees and experts, especially in the perceived importance of CRC screening information for IDM. CONCLUSIONS: This study provides insight into the decision-making stages and health literacy skills that are essential for IDM in CRC screening. The proposed conceptual framework can be used to inform the development of context-based measurement of health literacy and interventions to support IDM in cancer screening.

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

BACKGROUND: 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. OBJECTIVE: To explore knowledge, attitudes and beliefs regarding CRC and CRC screening among ethnic minority groups in the Netherlands. DESIGN: 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. RESULTS: 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. CONCLUSION: 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 screening.