Introduction We aimed to describe clinician-patient communication in the diagnostic process of memory clinics, specifically clinician behavior known to facilitate knowledgeable participation of patients during consultations. Methods In this multicenter, observational study, we audio-recorded routine diagnostic consultations of 41 clinicians and 136 patients/caregivers at eight memory clinics. Patients/caregivers completed surveys after each audiotaped consultation. We used a study-specific coding scheme to categorize communication behavior. Results Clinicians often provided information on (results of) diagnostic testing. They infrequently invited questions and/or checked understanding. Clinician behavior to involve patients in decision-making about diagnostic testing was limited. Of note, patients/caregivers rarely expressed their information or involvement preferences. Yet, approximately, one quarter of them would have liked to receive more information. Discussion Involving patients more explicitly by means of shared decision-making could benefit the quality of care provided in memory clinics because it enables clinicians to attune the diagnostic workup to the individual patient's needs.

Multigene panel testing is mainly used to improve identification of genetic causes in families with characteristics fitting multiple possible cancer syndromes. This technique may yield uncertainty, for example when variants of unknown significance are identified. This study explores counsellors’ and counselees’ experiences with uncertainty, and how they discuss uncertainties and decide about multigene panel testing. Six focus groups were conducted including 38 counsellors. Twelve counselees who had received genetic counselling about a multigene panel test were interviewed. The focus group sessions and interviews were audio-recorded and transcribed verbatim. Transcripts were analysed inductively by two independent coders and data were examined to obtain a comprehensive list of themes. Counsellors identified several uncertainties, e.g. finding a variant of unknown significance, or detecting an unsolicited finding. Most difficulty was experienced in deciding what uncertain information to communicate to counselees and how to do so. The extent and manner of providing uncertain information differed between centres and between counsellors. Counsellors attached more value to counselees’ preferences in decision making compared to less extended tests. Counselees experienced difficulty in recalling which uncertainties had been discussed during genetic counselling. They primarily reported to have experienced uncertainty about their own and their relatives’ risk of developing cancer. Counselees felt they had had a say in the decision. This study showed that counsellors need more guidance on whether and how to convey uncertainty. Undesirable practice variation in the communication of uncertainty may be prevented by determining what information should minimally be discussed to enable informed decision making.

Insights in the challenges that healthcare providers encounter in serving low health literate patients is lagging behind. This study explored challenges perceived by healthcare providers and provides strategies in communication with low health literate patients. Primary and secondary healthcare providers (N = 396) filled in an online survey. We assessed the frequency of challenges prior to, during and following a consultation, and which strategies were used and recommended. Survey outcomes were validated in in-depth interviews with healthcare providers (N = 7). Providers (76%) reported one or more challenges that were subscribed to patients’ difficulties in comprehending or applying health-related information, in communicating with professionals, or in taking responsibility for their health. Providers (31%) perceived difficulties in recognizing low health literate patients, and 50% rarely used health literacy specific materials. Providers expressed needs for support to recognize and discuss low health literacy, to adapt communication and to assess patient’s comprehension. Future research should focus on developing strategies for providers to ensure patients’ understanding (e.g. applying teach-back method), to recognize low health literate patients, and to support patients’ in taking responsibility for their health (e.g. motivational interviewing).

Counselors should address scientific uncertainties during genetic counseling to increase awareness and understanding in counselees.

BackgroundLynch Syndrome (LS) mutation carriers are at high risk for various cancer types, particularly colorectal cancer. Adherence to lifestyle and body weight recommendations for cancer prevention may lower this risk. To promote adherence to these recommendations, knowledge on determinants of adherence in LS mutation carriers is needed. Therefore, this study aimed to identify determinants of adherence to lifestyle recommendations for cancer prevention in LS mutation carriers.MethodsFive focus groups were conducted with DNA confirmed LS mutation carriers (n = 29). Transcripts were analyzed by thematic analysis, using the Health Belief Model (HBM) as a theoretical framework.ResultsTolerance of an unhealthy lifestyle because of the desire to enjoy life and avoidance of LS dominating their life were most frequently reported as important barriers of adherence to the recommendations. Most important facilitators of adherence to the recommendations were enhancement of wellbeing and intolerance of unhealthy foods due to colon surgery.ConclusionsThis study provided a comprehensive overview of determinants of adherence to recommendations for cancer prevention. These determinants, of which some are typically and unique for LS mutation carriers, can be used to design a lifestyle intervention that meets the needs of LS mutation carriers.

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Shared decision-making requires adequate functional health literacy (HL) skills from clients to understand information, as well as interactive and critical HL skills to obtain, appraise and apply information about available options. This study aimed to explore women’s HL skills and needs for support regarding shared decision-making in maternity care. In-depth interviews were held among women in Dutch maternity care who scored low (n = 10) and high (n = 13) on basic health literacy screening test(s). HL skills and perceived needs for support were identified through thematic analysis. Women appeared to be highly engaged in the decision-making process. They mentioned searching and selecting general information about pregnancy and labor, constructing their preferences based on their own pre-existing knowledge and experiences and by discussions with partners and significant others. However, women with low basic skills and primigravida perceived difficulties in finding reliable information, understanding probabilistic information, constructing preferences based on benefit/harm information and preparing for consultations. Women also emphasized dealing with uncertainties, changing circumstances of pregnancy and labor, and emotions. Maternity care professionals could further support clients by guiding them towards reliable information. To facilitate participation in decision-making, preparing women for consultations (e.g., agenda setting) and supporting them in a timely manner to understand benefit/harm information seem important.

BackgroundWomen from lower socioeconomic groups tend to be at greater risk of adverse perinatal outcomes, but are less likely to participate in preconception counselling compared to higher socioeconomic groups. This could be partly because of their limited skills to assess, understand and use health related information in ways that promote and maintain good health (health literacy skills). In this study we explored determinants of participation in preconception counselling among women with low health literacy in The Netherlands.MethodsPotential determinants of participation in preconception counselling were derived from the literature, and mapped onto a theoretical framework, which was tested for perceived relevance and completeness in an expert review (n = 20). The framework was used to prepare face-to-face interviews with women with low health literacy and a wish to conceive (n = 139). In the interviews we explored preconception counselling awareness, knowledge, considerations, subjective norms, self-efficacy, attitude, and intention. Linear regression analyses were used to test associations with intention to participate in preconception counselling.ResultsMost women (75%) were unaware of the concept of preconception counselling and the provision of counselling, even if they lived in areas where written invitations had been disseminated. Common considerations for participation were: preparation for pregnancy; perceived lack of information; and problems in a previous pregnancy. Considerations not to participate were mostly related to perceived sufficient knowledge and perceived low risk of perinatal problems. Respondents generally had a positive attitude towards participation in preconception counselling for themselves, and 41% reported that they would participate in preconception counselling.ConclusionWomen with low health literacy were generally unaware of the concept and provision of preconception counselling, but seemed to be interested in participation. Further research should investigate how to effectively reach and inform this group about preconception counselling. This knowledge is essential for evidence-based development of interventions to increase the accessibility and understanding of preconception counselling.Electronic supplementary materialThe online version of this article (10.1186/s12978-018-0617-1) contains supplementary material, which is available to authorized users.