What value structure underlies shared decision making? A qualitative synthesis of models of shared decision making.

OBJECTIVE: To construct the underlying value structure of shared decision making (SDM) models. METHOD: We included previously identified SDM models (n = 40) and 15 additional ones. Using a thematic analysis, we coded the data using Schwartz's value theory to define values in SDM and to investigate value relations. RESULTS: We identified and defined eight values and developed three themes based on their relations: shared control, a safe and supportive environment, and decisions tailored to patients. We constructed a value structure based on the value relations and themes: the interplay of healthcare professionals' (HCPs) and patients' skills [Achievement], support for a patient [Benevolence], and a good relationship between HCP and patient [Security] all facilitate patients' autonomy [Self-Direction]. These values enable a more balanced relationship between HCP and patient and tailored decision making [Universalism]. CONCLUSION: SDM can be realized by an interplay of values. The values Benevolence and Security deserve more explicit attention, and may especially increase vulnerable patients' Self-Direction. PRACTICE IMPLICATIONS: This value structure enables a comparison of values underlying SDM with those of specific populations, facilitating the incorporation of patients' values into treatment decision making. It may also inform the development of SDM measures, interventions, education programs, and HCPs when practicing.

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.

Consanguineous couples' experiences and views regarding expanded carrier screening: Barriers and facilitators in the decision-making process.

Expanded carrier screening (ECS) entails a screening offer for multiple recessive disorders at the same time, and allows testing of individuals or couples regardless of ancestry or geographic origin. Children of consanguineous couples have a higher-than-average risk of manifesting autosomal recessive disorders. This study aims to contribute to the responsible implementation of ECS for consanguineous couples. Seven semi-structured interviews were conducted with consanguineous couples who had recently participated in Whole Exome Sequencing (WES)-based ECS at Maastricht University Medical Center (MUMC+), the Netherlands. The test offered at MUMC+ covers a large number of disease-related genes (~2000), including severe, relatively mild, early- and late-onset disorders. Respondents were interviewed about their views on, and experiences with participation in WES-based ECS. Overall, participation was experienced as worthwhile: it enabled respondents to make informed choices with regard to family planning as well as to take on the presumed parental responsibility to deliver their children as healthy as possible. Furthermore, our findings suggest that (1) true consent for having this test requires timely information about the possible implications of a positive test result for specific categories of findings, as well as about the success rates of the available reproductive options; (2) the clinical geneticist can play a pivotal part in informing participants as well as providing clear information about autosomal recessive inheritance; (3) more research is needed to explore what type of genetic risk information is considered 'meaningful' by participants and actually contributes to reproductive decision-making.

Primary care professionals' views on population-based expanded carrier screening: an online focus group study.

BACKGROUND: Population-based expanded carrier screening (ECS) involves screening for multiple recessive diseases offered to all couples considering a pregnancy or during pregnancy. Previous research indicates that in some countries primary care professionals are perceived as suitable providers for ECS. However, little is known about their perspectives. We therefore aimed to explore primary care professionals' views on population-based ECS. METHODS: Four online focus groups with 14 general practitioners (GPs) and 16 community midwives were conducted in the Netherlands. RESULTS: Our findings highlight various perspectives on the desirability of population-based ECS. Participants agreed that ECS could enhance reproductive autonomy and thereby prevent suffering of the child and/or parents. However, they also raised several ethical, societal, and psychological concerns, including a tendency towards a perfect society, stigmatization, unequal access to screening and negative psychosocial consequences. Participants believed that provision of population-based ECS would be feasible if prerequisites regarding training and reimbursement for providers would be fulfilled. most GPs considered themselves less suitable or capable of providing ECS, in contrast to midwives who did consider themselves suitable. Nevertheless, participants believed that, if implemented, ECS should be offered in primary care or by public health services rather than as hospital-based specialized care, because they believed a primary care ECS offer increases access in terms of time and location. CONCLUSIONS: While participants believed that an ECS offer would be feasible, they questioned its desirability and priority. Studies on the desirability and feasibility of population-based ECS offered in primary care or public health settings are needed.

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

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.

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.

Stakeholder views on opportunistic genomic screening in the Netherlands: a qualitative study.

Genome sequencing can be used to actively search for genetic variants unrelated to the initial clinical question. While such 'opportunistic genomic screening' (OGS) has been proposed in the USA, a European discussion on the ethics of OGS is only starting. Should testing for selected 'secondary findings' be offered to patients who need genetic sequencing? Using focus groups and interviews, we explored views on OGS in adults and minors from three perspectives: policy experts (n = 9), health professionals (n = 8) and patient representatives (n = 7). A thematic approach was used to analyze the data. There was consensus that OGS should be evaluated in terms of the classical 'screening' framework, rather than as a form of 'good patient care'. Accordingly, stakeholders agreed that professionals do not have a 'fiduciary duty' to look for secondary findings. Adding screening to clinical care was only conceivable with the patient's informed consent. In general, stakeholders were reluctant towards OGS. Arguments for regarding OGS being premature included lack of evidence regarding its clinical utility, also in view of uncertainties regarding general population penetrance, and concerns about both its psychosocial impact and respect for autonomy. All groups agreed that OGS means unequal access, which was seen as problematic. Yet, despite their concerns, stakeholders felt that offering screening for certain actionable pathogenic variants with known high penetrance could potentially be valuable in certain contexts for both adults and minors. Pharmacogenetic variants were regarded as a category by itself, for which OGS could potentially be beneficial.

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.

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.

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.

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.

Ethnic Differences in Health Literacy Among Young Adults in Amsterdam.

BACKGROUND: Ethnic differences in health commence early in life. Ethnic minority young adults have a greater prevalence of unhealthier lifestyles and poorer health outcomes than their peers. Variations in health literacy could contribute to these ethnic inequalities in health but have not yet been investigated in this group. OBJECTIVE: This study investigated ethnic differences in performance-based and self-reported health literacy in young adults and examined whether these differences are explained by educational level, language difficulties, or cultural distance. METHODS: Young adults (age 18-25 years) from Dutch, African Surinamese, South-Asian Surinamese, Ghanaian, Turkish, and Moroccan ethnic backgrounds (N = 2,215) participated in the HELIUS (HEalthy Life in an Urban Setting) study, a cohort study in Amsterdam, the Netherlands. Performance-based health literacy was measured by the Rapid Estimate of Adult Literacy in Medicine in Dutch (REALM-D). Self-reported health literacy was measured by the Chew's Set of Brief Screening Questions (SBSQ). The association between ethnicity and health literacy, and the role of background characteristics was assessed by linear regression analyses. KEY RESULTS: Performance-based health literacy was low (REALM-D <60; range, 0-66) among 17% of the participants. After adjustment for educational level, average levels of REALM-D were lower among participants from a Ghanaian, Turkish, and Moroccan background than those from a Dutch background, whereas the two Surinamese groups did not differ from the Dutch group. Additional adjustment for language difficulties and cultural distance did not explain the differences between the five ethnic minority groups. Self-reported health literacy was low (SBSQ <3; range, 0-4) among 3% of the participants. There were no differences in levels of SBSQ between the ethnic minority groups and the Dutch group. CONCLUSIONS: We found ethnic differences in performance-based health literacy, which largely remained after adjustment for educational level. Further research is needed to gain insight into how young adults from different ethnic groups appraise and apply health information in various contexts. [HLRP: Health Literacy Research and Practice. 2018;2(4):e192-e204.]. PLAIN LANGUAGE SUMMARY: We investigated ethnic differences in health literacy among young adults (age 18-25 years) living in the Netherlands. Compared to the Dutch group, some ethnic minority groups scored lower on performance-based health literacy, independent of educational level. Self-reported health literacy did not differ between Dutch and ethnic minority groups.

The interpreter as co-interviewer: the role of the interpreter during interviews in cross-language health research.

OBJECTIVE: Interviews with ethnic minority patients provide a rich source of data to understand their perspectives of disease and its management. Language barriers are, however, often a problem so interpreters need to be used. We explored the impact of the interpreter on cross-language interviews between researchers and respondents. METHODS: Secondary analysis of four interviews between researchers and patients involving professional interpreters. RESULTS: Interpreters were actively involved and influenced the interview in several ways: they assumed the interviewer's communicative role, edited information; initiated information-seeking, took over control of the interview, and took over the respondent's role. While the interpreter supported the interviewer, they posed risks to the quality of the interview. CONCLUSION: Researchers need to be aware of the influence of interpreters. Researchers should instruct interpreters carefully about their roles though they may benefit from interpreters' strategies to support them.

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.