[Trends in the lifetime risk to be diagnosed with cancer in the Netherlands]. / Ontwikkeling van de kans op kanker in 1990-2019.

OBJECTIVE: To describe for the Dutch population the lifetime risk to be diagnosed with or to die from cancer. DESIGN: The cancer incidence and death rates of 1990-2019 were analyzed by 5-year periods. METHOD: For the calculations cancer incidence rates were used from the Netherlands Cancer Registry. Population and mortality data were obtained from Statistics Netherlands. All rates were stratified according to gender and age groups. Using these rates, the lifetime risk of cancer or of dying from cancer were calculated using the software program DevCan. RESULTS: Compared to 1990, probabilities of being diagnosed with cancer increased by over ten percent points, to 54% for men and 47% for women. In the most recent period, the highest probabilities were for prostate cancer in men (13%), and breast cancer in women (14%). The lifetime risk of dying from cancer was comparably stable for all age groups combined, but decreased under 75 years (males) and 65 years (females), while it increased in the elderly. CONCLUSION: During their lifetime, roughly half of all Dutch residents are diagnosed with cancer. The sharp increase in lifetime risk of diagnosis with cancer shows the need for additional efforts to aim at prevention of cancer.

Counselees' Expressed Level of Understanding of the Risk Estimate and Surveillance Recommendation are Not Associated with Breast Cancer Surveillance Adherence.

We studied counselees' expressed understanding of the risk estimate and surveillance recommendation in the final consultation for breast cancer genetic counseling in relation with their risk perception, worry and cancer surveillance adherence 1 year post-counseling. Consecutive counselees were included from 2008 to 2010. Counselees with an indication for diagnostic DNA-testing for themselves or a breast cancer affected relative were requested to complete online questionnaires before and after counseling and one year after counseling (N = 152-124). Self-reported surveillance was compared to surveillance recommendations. Consultations were videotaped. Counselees' reactions to the risks and recommendations were coded. Statements about the risk perception and surveillance intentions of breast cancer unaffected counselees were transcribed. Associations with outcomes were explored. Almost all breast cancer unaffected counselees (>90 %) reacted to their risk estimate with an utterance indicating understanding and this reaction was not significantly associated with their post-visit risk perception alignment. Over one-third (38.6 %) overestimated their risk post-counseling. Few counselees (5.8 %) expressed surveillance intentions. One year after counseling, about three-quarters (74.0 %) of the breast cancer unaffected counselees had adhered to the surveillance recommendation. Almost one-quarter (23.3 %) had performed more mammograms/MRI scans than recommended, which was associated with prior mammography uptake (n = 47; X (2) = 5.2; p = .02). Counselees' post-counseling overestimation of their risk, high levels of worry and high surveillance uptake were not reflected in their reactions to the counselor's information during the final visit.

Follow-up effects of a tailored pre-counseling website with question prompt in breast cancer genetic counseling.

OBJECTIVE: Pre-counseling education helps counselees to prepare for breast cancer genetic counseling and might subsequently result in more positive experiences, improved cognitive outcomes and more experienced control. This study assessed the effects of a website with tailored information and a blank sheet to fill in questions (question prompt; QP), at 1 week and 1 year post-counseling. METHODS: Consecutive counselees were randomized to the usual care group (UC) or the intervention group (UC+website+QP). Counselees completed questionnaires pre- and post-counseling and 1 year follow-up. We conducted multilevel regression analyses corrected for time. RESULTS: Intervention group counselees (n = 103) were more satisfied about their final visit (ß = .35; CI: .06-.65; P = .02; n = 156) than UC group counselees (n = 94). Intervention group counselees also reported more positive experiences with the counseling (ß = .32; CI: .06-.59; P = .02; n = 188) and higher perceived personal control 1 year post-counseling (ß = .51; CI: .18-.84; P = .002; n = 193). No significant effects were found on recall, knowledge, anxiety, cancer worry, risk perception alignment and adherence to breast surveillance advice. CONCLUSION: This study shows that pre-counseling education providing tailored information and QP, might lead to improvements in experiences with the counseling and perceived personal control 1 year post-counseling. PRACTICE IMPLICATIONS: Online pre-visit information is a feasible tool to enhance counselees' experiences.

Counselee participation in follow-up breast cancer genetic counselling visits and associations with achievement of the preferred role, cognitive outcomes, risk perception alignment and perceived personal control.

The purpose of the study was to assess the counselee participation in the follow-up visits, compared to the first visits, for breast cancer genetic counselling and to explore associations with counselees' achievement of their preferred role in decision making, information recall, knowledge, risk perception alignment and perceived personal control. First and follow-up visits for breast cancer genetic counselling of 96 counselees of a Dutch genetics center were videotaped (2008-2010). Counselees completed questionnaires before counselling (T1), after the follow-up visit (T2) and one year after the follow-up visit (T3). Consultations were rated with the Roter Interaction Analysis System (RIAS). Counselee participation was measured as the percentage of counselee utterances, the percentage of counselee questions and the interactivity (number of turns per minute). Follow-up visits had higher levels of counselee participation than first visits as assessed by the percentage of counselee talk, the interactivity and counselee questions. More counselee talk in the follow-up visit was related to higher achievement of the preferred role (T2) and higher perceived personal control (T3). Higher interactivity in the follow-up visit was related to lower achievement of the preferred role in decision making and lower information recall (T2). There were no significant associations with the percentage of questions asked and none of the participation measures was related to knowledge, risk perception alignment and perceived personal control (T2). In line with the interviewing admonishment 'talk less and listen more', the only assessment of counselee participation associated to better outcomes is the percentage of counselee talk. High interactivity might be associated with lower recall in breast cancer genetic counselees who are generally highly educated. However, this study was limited by a small sample size and a heterogeneous group of counselees. Research is needed on the interactions causing interactivity and its relationships with involvement in decision making and recall.

Does and should breast cancer genetic counselling include lifestyle advice?

To optimally inform counselees about their and their relatives' risks, information about lifestyle risk factors, e.g. physical activity and alcohol consumption, might be discussed in breast cancer genetic counselling. This study explored whether lifestyle was discussed, on whose initiative, whether information and/or advice was given, and whether discussion of lifestyle was related to counselees' characteristics and their causal attributions. First and follow-up consultations with 192 consecutive counselees for breast cancer genetic counselling were videotaped and coded for discussion of lifestyle topics. Counselees completed web-based questionnaires before the initial and after the final consultation. With 52 (27%) counselees lifestyle was discussed, either in the first, or the final consultation, or both. Counselees mostly raised the topic (60%). Counsellors provided information about lifestyle risk factors to 19% and lifestyle advice to 6% of the counselees. Discussion of lifestyle was not associated with counselees' characteristics or causal attributions. Post-counselling, more affected counselees considered lifestyle as a cause of their breast cancer (29%) compared to pre-counselling (15%; p = 0.003). Information and advice about lifestyle risk factors was infrequently provided, both with breast cancer unaffected and affected counselees and with those who did and did not consider their lifestyle as a cause of their breast cancer. Modifiable lifestyle factors could be discussed more frequently to optimally inform counselees about possible ways to reduce their risk. Counsellors should be educated about effects of lifestyle and research should be conducted on how to best integrate lifestyle information in breast cancer genetic counselling.

Barriers and facilitators to effective communication experienced by patients with malignant lymphoma at all stages after diagnosis.

OBJECTIVE: This study aims to gain insight into patient-perceived communication barriers and facilitators at different stages after the diagnosis of malignant lymphoma. We have detected patterns to explain when these factors influence communication predominantly. METHOD: A qualitative approach was applied, derived from the context mapping framework. A total of 28 patients completed a set of assignments about their experiences with provider-patient communication during medical consultations. Subsequently, these patients and nine companions shared their experiences during a semistructured (group) interview, which was recorded on audiotape. The audiotapes and assignments were analysed with MAXQDA software. RESULTS: From the patients' viewpoint, communicating effectively appears to depend on their own attributes (e.g. emotions), the health care professionals' attributes (e.g. attitude) and external factors (e.g. time pressure). Three patient communication states were identified: (i) overwhelmed, passive; (ii) pro-active, self-motivated; and (iii) proficient, empowered. Patients seem to behave differently in the three communication states. CONCLUSIONS: This study lists patient-perceived communication barriers and facilitators and identifies three different communication states, which indicate when certain barriers and facilitators are encountered. PRACTICAL IMPLICATIONS: These findings may support health care professionals to tailor the provision of support and information and remove communication barriers accordingly. Additionally, they provide input for interventions to support patients in effective communication.

Nonverbal communication and conversational contribution in breast cancer genetic counseling: are counselors' nonverbal communication and conversational contribution associated with counselees' satisfaction, needs fulfillment and state anxiety in breast cancer genetic counseling?

OBJECTIVE: The current study aimed to examine how counselors' nonverbal communication (i.e. nonverbal encouragements and counselee-directed eye gaze) and conversational contribution (i.e. verbal dominance and interactivity) during the final visit within breast cancer genetic counseling relate to counselee satisfaction, needs fulfillment and anxiety. METHODS: Breast cancer counselees (N=85) completed questionnaires measuring satisfaction, needs fulfillment and anxiety after the final consultation and anxiety before the initial visit. Consultations were videotaped. Counselor nonverbal encouragements and counselee-directed eye gaze were coded. Verbal dominance and interactivity were measured using the Roter Interaction Analysis System (RIAS). RESULTS: More counselor nonverbal encouragements and higher counselor verbal dominance were both significantly related to higher post-visit anxiety. Furthermore, counselor verbal dominance was associated with lower perceived needs fulfillment. No significant associations with eye gaze and interactivity were found. CONCLUSION: More research is needed on the relationship between nonverbal encouragements and anxiety. Given the unfavorable association of counselor verbal dominance with anxiety and needs fulfillment, more effort could be devoted to involve counselees in the dialog and reduce the counselor's verbal contribution during the consultation. PRACTICE IMPLICATIONS: Interventions focused on increasing counselees' contribution in the consultation may be beneficial to counselees.

The validity of using analogue patients in practitioner-patient communication research: systematic review and meta-analysis.

When studying the patient perspective on communication, some studies rely on analogue patients (patients and healthy subjects) who rate videotaped medical consultations while putting themselves in the shoes of the video-patient. To describe the rationales, methodology, and outcomes of studies using video-vignette designs in which videotaped medical consultations are watched and judged by analogue patients. Pubmed, Embase, Psychinfo and CINAHL databases were systematically searched up to February 2012. Data was extracted on: study characteristics and quality, design, rationales, internal and external validity, limitations and analogue patients' perceptions of studied communication. A meta-analysis was conducted on the distribution of analogue patients' evaluations of communication. Thirty-four studies were included, comprising both scripted and clinical studies, of average-to-superior quality. Studies provided unspecific, ethical as well as methodological rationales for conducting video-vignette studies with analogue patients. Scripted studies provided the most specific methodological rationales and tried the most to increase and test internal validity (e.g. by performing manipulation checks) and external validity (e.g. by determining identification with video-patient). Analogue patients' perceptions of communication largely overlap with clinical patients' perceptions. The meta-analysis revealed that analogue patients' evaluations of practitioners' communication are not subject to ceiling effects. Analogue patients' evaluations of communication equaled clinical patients' perceptions, while overcoming ceiling effects. This implies that analogue patients can be included as proxies for clinical patients in studies on communication, taken some described precautions into account. Insights from this review may ease decisions about including analogue patients in video-vignette studies, improve the quality of these studies and increase knowledge on communication from the patient perspective.

Effects of a pre-visit educational website on information recall and needs fulfilment in breast cancer genetic counselling, a randomized controlled trial.

INTRODUCTION: Pre-visit education which helps counselees to prepare for their first visit for breast cancer genetic counseling might enhance information recall and needs fulfilment. This study assessed the effects of a pre-visit website with tailored information and question prompt sheet (QPS), named E-info geneca. METHODS: A total of 197 counselees were randomized to receive usual care (UC) or UC plus E-info geneca. All counselees completed a pre- and post-visit questionnaire and visits were videotaped. We studied effects on counselees' information recall, knowledge about breast cancer and heredity, fulfillment of needs, risk perception alignment, anxiety and perceived personal control, using multilevel regression analyses. RESULTS: Intent-to-treat analysis showed that counselees in the intervention group (n = 103) had higher levels of recall of information from the consultation (ß = .32; confidence interval (CI): .04 to .60; P = .02; d = .17) and post-visit knowledge of breast cancer and heredity (ß = .30; CI: .03 to .57; P = .03) than counselees in the UC group (n = 94). Also, intervention group counselees reported better fulfilment of information needs (ß = .31; CI: .03 to .60; P = .03). The effects of the intervention were strongest for those counselees who did not receive an indication for DNA testing. Their recall scores showed a larger increase (ß = .95; CI: .32 to 1.59; P = .003; d = .30) and their anxiety levels dropped more in the intervention compared to the UC group (ß = -.60; CI: -1.12 to -.09; P = .02). No intervention effects were found after the first visit on risk perception alignment or perceived personal control. CONCLUSIONS: This study shows that pre-counseling education, using tailored information technology, leads to more effective first visits for breast cancer genetic counseling, in particular for counselees who received no indication for DNA testing and, therefore, had no indication for a second visit. Future study should focus on the effects of a pre-visit website on the outcomes after a complete series of visits. TRIAL REGISTRATION: Dutch Trial Register ISRCTN82643064.

A pre-visit website with question prompt sheet for counselees facilitates communication in the first consultation for breast cancer genetic counseling: findings from a randomized controlled trial.

PURPOSE: The initial breast cancer genetic counseling visit is mainly educational, with large amounts of relatively standard information and little counselee participation. Counselors might provide more counselee-specific information if counselees would participate more. A pre-visit website providing computer-tailored information and a question prompt sheet (QPS) might help counselees to pursue a more active role. METHODS: Counselees were randomized to receive usual care (UC) or UC plus the pre-visit website. The QPS questions were sent to the counselor before the visit. All counselees completed a baseline questionnaire, and visits were videotaped. RESULTS: Intervention-group counselees (n = 102) did not ask more questions than UC-group counselees (n = 90). However, counselees in the intervention group more often shared their agenda (B = 10.37; confidence interval (CI) 2.68-18.06; P = 0.01), directed the communication (B = 0.41; CI 0.28-0.53; P = 0.01), and paraphrased the counselors' words (B = 5.18; CI 0.43-9.92; P = 0.03). Counselors introduced and answered the QPS questions. As a result, they provided more information about the topics of these questions, and the information provided was more specific to whether there was an indication for DNA testing. CONCLUSION: A pre-visit website with QPS helped counselees to communicate more assertively. As a result, the information provided was more counselee specific, without affecting the visit duration.

A pre-visit tailored website enhances counselees' realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling.

Counselees who are the first in their family to request breast cancer genetic counselling often don't know what to expect or have unrealistic expectations of genetic counselling. Receiving tailored information might help them to prepare for their first visit. We conducted a study of the effects of a pre-visit website providing computer-tailored information (E-info gene(ca)), on counselees' expectations, knowledge about breast cancer and heredity and information needs. Counselees were randomized to receive usual care (UC) or UC plus website. All counselees completed a baseline questionnaire and those randomized to the intervention group also completed a questionnaire after having viewed the website. After having accessed E-info gene(ca) counselees (n = 101) better knew what to expect of their first visit (χ(2) = 4.43; P = .04) and less often showed unrealistic expectations about possibilities for DNA-testing (χ(2) = 4.84; P = .03) than counselees in the UC group (n = 89). In addition, the website increased counselees' knowledge of breast cancer and heredity (B = .23; P = .003) and lowered their information needs (B = -.16; P = .000) compared to the UC group. Especially, information concerning procedural aspects and emotional consequences of genetic counselling was considered less important. This study showed that counselees know more and need less when they are provided with extended pre-visit information through a tailored website and counselees enter the visit with more realistic expectations of genetic counselling. This might facilitate and focus communication within the subsequent consultation.

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

Counselees from different countries may differ in demographic and medical characteristics and this could affect their pre-counselling cognitions and psychosocial variables. Research outcomes may therefore not be easily transferable between countries. To examine this, a cross-national comparison of UK (West Midlands: WM) and Dutch (Middle Netherlands: MN) counselees in breast cancer genetic counselling was conducted. Two hundred thirty-eight WM and 156 MN proband counselees were compared on demographics, breast cancer history and referral pathways. Multivariate logistic regression analyses were performed to check whether national differences in knowledge of breast cancer and heredity, risk perception, worry and information needs persisted when corrected for the background characteristics. About half of the Dutch compared to 8% of UK counselees were affected by breast cancer. More UK than Dutch counselees were at high risk from hereditary breast cancer. UK counselees had higher risk perceptions and more knowledge about breast cancer prevalence, but these differences lost significance when corrected for counselees' risk levels and other background characteristics. Counselees from the UK might report higher levels of worry than Dutch counselees and this could not be explained by their background characteristics. Comparisons of findings between the UK and the Netherlands show that the UK seems to have a higher percentage of high-risk referrals and these counselees seem to have higher risk perceptions. Irrespective of their actual risk level, UK counselees might be more worried. Comparing findings between the different countries raises questions about how transferable research findings are from one culture to another.

Use and evaluation of an individually tailored website for counselees prior to breast cancer genetic counseling.

This article explores the use and evaluation of a pre-visit website which aims to prepare counselees who are the first in their family to request breast cancer genetic counseling. This website E-info gene(ca) provides computer-tailored information and a blank question prompt sheet (QPS) on which counselees can formulate their questions for the consultation. The objectives of this study are: first, to assess which factors influence the use of E-info gene(ca), including the duration of site and page views, the influence of topic sequence in the menu bar on the sequence of page views, and the relation between website use and the use of the QPS; second, to explore counselees' evaluations of E-info gene(ca) and relations with counselee characteristics. User statistics were analyzed to describe duration of site and page views. Multivariate analyses were used to predict duration of web and page views, sequence of page views, QPS use, and site evaluations. Independent variables were sociodemographic background, disease status, psychological functioning, and information needs. All 101 counselees who were provided with a login accessed the website and spent, on average, 21 min viewing the website. Counselees affected with breast cancer spent more time on the website than unaffected counselees. Half of all page views were within the sequence of topics in the menu and older counselees, and those who made less use of the internet more often navigated according to the menu sequence than others. Having viewed information about why it is important to ask questions increased QPS use. Counselees who had higher information needs considered the information more helpful. This hospital-provided website for breast cancer genetic counselees was accessible and was evaluated positively, even concerning older counselees and those who had not searched the internet for information about hereditary cancer. Counselees might navigate hospital-provided websites more in line with the sequence of topics in the menu bar, than generally accessible health websites.

Enhancing international collaboration among early career researchers.

OBJECTIVE: The European Association of Communication in Healthcare (EACH) Early Career Researchers Network (ECRN) aims are to (1) promote international collaboration among young investigators and (2) provide a support network for future innovative communication research projects. In October 2009, Miami, USA at a workshop facilitated by the ECRN at the International Conference on Communication in Healthcare (ICCH) hosted by the American Academy of Communication in Healthcare we explored common facilitators and challenges faced by early career researchers in health communication research. METHODS: Attendees introduced themselves, their research area(s) of interest, and listed one facilitator and one barrier for their career development. EACH ECRN members then led a discussion of facilitators and challenges encountered in communication research projects and career development. We discussed potential collaboration opportunities, future goals, and activities. RESULTS: Having supportive collegial relationships, institutional support, job security, and funding are critical facilitators for early career investigators. Key challenges include difficulty with time management and prioritizing, limited resources, and contacts. CONCLUSION: International collaboration among early career researchers is a feasible and effective means to address important challenges, by increasing opportunities for professional support and networking, problem-solving, discussion of data, and ultimately publishing. PRACTICE IMPLICATIONS: Future AACH-EACH Early Career Researcher Networks should continue to build collaborations by developing shared research projects, papers, and other scholarly products.

Development of E-info gene(ca): a website providing computer-tailored information and question prompt prior to breast cancer genetic counseling.

This article describes the stepwise development of the website 'E-info gene(ca)'. The website provides counselees in breast cancer genetic counseling with computer-tailored information and a question prompt prior to their first consultation. Counselees generally do not know what to expect from genetic counseling and they tend to have a passive role, receiving large amounts of relatively standard information. Using the "intervention mapping approach," we developed E-info gene(ca) aiming to enhance counselees' realistic expectations and participation during genetic counseling. The information on this website is tailored to counselees' individual situation (e.g., the counselee's age and cancer history). The website covers the topics of the genetic counseling process, breast cancer risk, meaning of being a carrier of a cancer gene mutation, emotional consequences and hereditary breast cancer. Finally, a question prompt encourages counselees to prepare questions for their genetic counseling visit.

Tailored information about cancer risk and screening: a systematic review.

OBJECTIVE: To study interventions that provide people with information about cancer risk and about screening that is tailored to their personal characteristics. We assess the tailoring characteristics, theory base and effects on risk perception, knowledge and screening behavior of these interventions. METHODS: A systematic literature review in this field was performed. PubMed, EMBASE, PsychINFO, CINAHL and Cochrane databases were searched. Forty studies fulfilled all inclusion criteria. Methodological quality was assessed and a best evidence synthesis conducted for the 28 randomized controlled trials without co-intervention or with similar co-intervention in intervention and control group. RESULTS: Most included studies evaluated an intervention aiming to promote cancer screening. The majority of articles (30) evaluated information that was tailored based on variables related to behavior change, sometimes combined with cancer risk factors. Ten other articles described an intervention that tailored information based on risk factors only. CONCLUSION: Information that was tailored based on behavior change variables increased realistic perception of cancer risks and knowledge of cancer compared to generic information. Also, information tailored to individuals' risk factors increased realistic risk perception compared to generic information. PRACTICE IMPLICATIONS: To improve cancer risk perception and knowledge health providers could better give patients information about cancer risk and screening that is tailored to their personal characteristics than generic information.

Patients' priorities for ambulatory hospital care centres. A survey and discrete choice experiment among elderly and chronically ill patients of a Dutch hospital.

OBJECTIVE: This study established patients' preferences regarding the facilities in an adjacent centre for ambulatory hospital care. It also identified determinants of patients' choice to visit this centre instead of the regional hospital. METHODS: A questionnaire survey among 1477 elderly and chronically ill people (response 72%) assessed patients' expectations regarding (a) quality of hospital care, (b) facilities in centres for ambulatory hospital care, and (c) future use of these centres. Additionally, 75 patients participated in discrete choice experiments about their decision to visit a centre for ambulatory hospital care or the regional hospital. RESULTS: Respondents prioritized facilities for examination and medical consultations in the ambulatory care centres. Half of the respondents also valued paramedic care, information desks and pharmacies as centre facilities. Most patients living near a future centre for ambulatory care would rather visit this centre than the regional hospital. However, they favoured seeing their familiar physician, short waiting lists and appointments scheduled consecutively on 1 day. If these aspects were not guaranteed at the adjacent centres, more patients chose to visit the hospital. CONCLUSIONS: Although patients value most facilities, they set clear priorities. Furthermore, this study showed three important conditions in the decision to visit an ambulatory care centre; (1) the possibility to see their familiar physician, (2) to have consecutive appointments, and (3) a short waiting list. These three factors were more important to patients than proximity. Thus, when choosing between a hospital and an adjacent centre for ambulatory care, quality aspects matter.

Patient education in Western European hospitals: a comparison of the Netherlands, Flanders and England.

OBJECTIVE: This research describes the organization of patient education in hospitals and the conditions that influence this in the Netherlands, Flanders and England. METHODS: The research consists of document analysis and interviews. RESULTS: On the organizational level, there can be a patient information desk (England and the Netherlands) and/or a specialized officer on patient education (the Netherlands and England). In the three countries/regions, the organization of patient education on the program level, for patient groups, is characterized by consultations of specialized nurses, patient information materials and patient education policy. Expert centers stimulate patient education through training and quality projects. Lobbying by patient organizations is important for the setting up of patient education. Both expert centers and patient organizations are financially dependent on and respond to policy of the government. CONCLUSION: Patient education is mostly organized on the organizational level or the program level, or both. Patient organizations and expert centers are conditions that are dependent on the government. Government policy and subsidies are considered as the most important conditions for the organization of patient education in hospitals. PRACTICE IMPLICATIONS: Commitment of officers working in patient education to the Health Promoting Hospital project and the European Association for Communication in Healthcare could stimulate patient education.