Are They Important? Patients' Communication Barriers to Discussing Online Health Information During Consultations.

A minority of the patients who search for online health information report discussing or having an intention to discuss this information with their healthcare provider. Not discussing online health information inhibits the provision of patient-centered care and limits the healthcare provider's possibility to tackle misinformation. Within the confines of the linguistic model of patient participation, we first provide an overview of barriers to discussing online health information during consultations. Second, we pinpoint which of these barriers indicate a need for improvement. Participants from the Netherlands (N = 300) completed a survey that measured the communication barriers (N = 15) as identified based on previous literature and interviews. Using the QUality Of Care Through the patient's Eyes (QUOTE) approach, we measured the extent to which a specific factor was a barrier ("importance") and assessed whether the barrier would withhold patients from discussing online health information ("performance"). Scores on importance and performance were multiplied to identify which barriers show the most significant room for improvement. Especially "preferring to discuss other matters" often occurred. Nine barriers showed a moderate need for improvement. We discuss the implications of these findings for healthcare providers in consultations. Future research should include observational data to analyze communication barriers to discussing online health information in consultations.

Patient values in patient-provider communication about participation in early phase clinical cancer trials: a qualitative analysis before and after implementation of an online value clarification tool intervention.

BACKGROUND: Patients with advanced cancer who no longer have standard treatment options available may decide to participate in early phase clinical trials (i.e. experimental treatments with uncertain outcomes). Shared decision-making (SDM) models help to understand considerations that influence patients' decision. Discussion of patient values is essential to SDM, but such communication is often limited in this context and may require new interventions. The OnVaCT intervention, consisting of a preparatory online value clarification tool (OnVaCT) for patients and communication training for oncologists, was previously developed to support SDM. This study aimed to qualitatively explore associations between patient values that are discussed between patients and oncologists during consultations about potential participation in early phase clinical trials before and after implementation of the OnVaCT intervention. METHODS: This study is part of a prospective multicentre nonrandomized controlled clinical trial and had a between-subjects design: pre-intervention patients received usual care, while post-intervention patients additionally received the OnVaCT. Oncologists participated in the communication training between study phases. Patients' initial consultation on potential early phase clinical trial participation was recorded and transcribed verbatim. Applying a directed approach, two independent coders analysed the transcripts using an initial codebook based on previous studies. Steps of continuous evaluation and revision were repeated until data saturation was reached. RESULTS: Data saturation was reached after 32 patient-oncologist consultations (i.e. 17 pre-intervention and 15 post-intervention). The analysis revealed the values: hope, perseverance, quality or quantity of life, risk tolerance, trust in the healthcare system/professionals, autonomy, social adherence, altruism, corporeality, acceptance of one's fate, and humanity. Patients in the pre-intervention phase tended to express values briefly and spontaneously. Oncologists acknowledged the importance of patients' values, but generally only gave 'contrasting' examples of why some accept and others refuse to participate in trials. In the post-intervention phase, many oncologists referred to the OnVaCT and/or asked follow-up questions, while patients used longer phrases that combined multiple values, sometimes clearly indicating their weighing. CONCLUSIONS: While all values were recognized in both study phases, our results have highlighted the different communication patterns around patient values in SDM for potential early phase clinical trial participation before and after implementation of the OnVaCT intervention. This study therefore provides a first (qualitative) indication that the OnVaCT intervention may support patients and oncologists in discussing their values. TRIAL REGISTRATION: Netherlands Trial Registry: NL7335, registered on July 17, 2018.

Profiling Cancer Patients Based on Their Motives for Seeking Informational and Emotional Support Online.

Understanding why patients seek informational and/or emotional support online is fundamental to providing patients with accurate and reliable support that is tailored to their needs, preferences, and personal situation. Based on the stress and coping theory and uses and gratifications theory (UGT), this study aimed to identify theoretically-founded profiles of cancer patients differing in their motives for seeking informational and/or emotional support online, and to compare the profiles in terms of patients' psychological and background characteristics, and perception of health care services. Hierarchical cluster analysis was conducted, using questionnaire data from patients visiting a large Dutch health website (N = 181). This revealed three distinctive profiles, i.e., overall seekers (n = 83, 46.0%), occasional information seekers (n = 83, 46.0%), and contact exchangers (n = 15, 8.0%). Patients across these profiles differed in their eHealth literacy, with the contact exchangers being more eHealth literate than the overall seekers and occasional information seekers. The results can be used to create awareness among health care providers, web designers, and patient organizations on different types of cancer patients with different motives for seeking informational and/or emotional support online, and help them to tailor recommendations to and development of (online) sources that fit patients' needs. Future research could further investigate the integration of stress and coping theory with UGT by acknowledging the interplay of different coping strategies and different gratifications.

Effects of a shared decision making intervention for older adults with multiple chronic conditions: the DICO study.

BACKGROUND: To evaluate the effects of a shared decision making (SDM) intervention for older adults with multiple chronic conditions (MCCs). METHODS: A pragmatic trial evaluated the effects of the SDMMCC intervention, existing of SDM training for nine geriatricians in two hospitals and a preparatory tool for patients. A prospective pre-intervention post-intervention multi-center clinical study was conducted in which an usual care group of older patients with MCC and their informal caregivers was included before the implementation of the intervention and a new cohort of patients and informal caregivers after the implementation of the intervention. SDM was observed using the OPTIONMCC during video-recorded consultations. Patient- and caregivers reported outcomes regarding their role in SDM, involvement, perceived SDM and decisional conflict were measured. The differences between groups regarding the level of observed SDM (OPTIONMCC) were analyzed with a mixed model analysis. Dichotomous patient-reported outcomes were analyzed with a logistic mixed model. RESULTS: From two outpatient geriatric clinics 216 patients with MCCs participated. The mean age was 77.3 years, and 56.3% of patients were female. No significant difference was found in the overall level of SDM as measured with the OPTIONMCC or in patient-reported outcomes. However, at item level the items discussing 'goals', 'options', and 'decision making' significantly improved after the intervention. The items discussing 'partnership' and 'evaluating the decision-making process' showed a significant decrease. Fifty-two percent of the patients completed the preparatory tool, but the results were only discussed in 12% of the consultations. CONCLUSION: This study provides scope for improvement of SDM in geriatrics. Engaging older adults with MCCs and informal caregivers in the decision making process should be an essential part of SDM training for geriatricians, beyond the SDM steps of explaining options, benefits and harms. More attention should be paid to the integration of preparatory work in the consultation.

The Patient Navigator: Can a systematically developed online health information tool improve patient participation and outcomes related to the consultation in older patients newly diagnosed with colorectal cancer?

BACKGROUND: Older cancer patients may search for health information online to prepare for their consultations. However, seeking information online can have negative effects, for instance increased anxiety due to finding incorrect or unclear information. In addition, existing online cancer information is not necessarily adapted to the needs of older patients, even though cancer is a disease often found in older individuals. OBJECTIVE: The aim of this study was to systematically develop, implement and evaluate an online health information tool for older cancer patients, the Patient Navigator, providing information that complements the consultation with healthcare providers. METHOD: For the development and evaluation of the Patient Navigator, the four phases of the MRC framework were used. In the first and second phase the Patient Navigator was developed and pilot tested based on previous research and sub-studies. During the third phase the Patient Navigator was implemented in four Dutch hospitals. In the last phase, a pilot RCT was conducted to evaluate the Patient Navigator in terms of usage (observational tracking data), user experience (self-reported satisfaction, involvement, cognitive load, active control, perceived relevance of the tool), patient participation (observational data during consultation), and patient outcomes related to the consultation (questionnaire data regarding anxiety, satisfaction, and information recall). Recently diagnosed colorectal cancer patients (N = 45) were randomly assigned to the control condition (usual care) or the experimental condition (usual care + Patient Navigator). RESULTS: The Patient Navigator was well used and evaluated positively. Patients who received the Patient Navigator contributed less during the consultation by using less words than patients in the control condition and experienced less anxiety two days after the consultation than patients in the control condition. CONCLUSION: Since the Patient Navigator was evaluated positively and decreased anxiety after the consultation, this tool is potentially a valuable addition to the consultation for patients. Usage of the Patient Navigator resulted in patients using less words during consultations, without impairing patients' satisfaction, possibly because information needs might be fulfilled by usage of the Patient Navigator. This could create the possibility to personalize communication during consultations and respond to other patient needs.

Core values of patients with advanced cancer considering participation in an early-phase clinical trial: a qualitative study.

OBJECTIVE: This article identifies the core values that play a role in patients' decision-making process about participation in early-phase clinical cancer trials. METHODS: Face-to-face, semi-structured serial interviews (n = 22) were performed with thirteen patients with advanced cancer recruited in two Dutch specialized cancer centers. In a cyclic qualitative analysis process, open and axial coding of the interviews finally led to an overview of the values that are woven into patients' common language about cancer and clinical trials. RESULTS: Six core values were described, namely, acceptance creates room for reconsideration of values, reconciliation with one's fate, hope, autonomy, body preservation, and altruism. Previously found values in advanced cancer, such as acceptance, hope, autonomy, and altruism, were further qualified. Reconciliation with one's fate and body preservation were highlighted as new insights for early-phase clinical cancer trial literature. CONCLUSIONS: This article furthers the understanding of core values that play a role in the lives and decision-making of patients with advanced cancer who explore participation in early-phase clinical cancer trials. These values do not necessarily have to be compatible with one another, making tragic choices necessary. Understanding the role of core values can contribute to professional sensitivity regarding what motivates patients' emotions, thoughts, and decisions and help patients reflect on and give words to their values and preferences. It supports mutual understanding and dialog from which patients can make decisions according to their perspectives on a good life for themselves and their fellows in the context of participation in an early-phase clinical cancer trial.

Testing the effects on information use by older versus younger women of modality and narration style in a hospital report card.

BACKGROUND: Hospital report cards (HRCs) are usually presented in a textual and factual format, likely hampering information processing. OBJECTIVE: This study aimed to investigate the effects of audiovisual and narrative information in HRCs on user responses, and to test differences between older and younger women. DESIGN: A 2 (modality [textual vs. audiovisual]) × 3 (narration style [factual vs. process narrative vs. experience narrative]) online experiment was conducted. Information about breast cancer care was used as a case example. Age (younger [<65] vs. older [≥65]) was included as a potential effect modifier. SETTING AND PARTICIPANTS: A total of 631 disease-naïve women (Mage = 56.06) completed an online survey. The outcomes were perceived cognitive load, satisfaction, comprehension, information recall and decisional conflict. Data were analysed using AN(C)OVAs. RESULTS: Audiovisual (vs. textual) information resulted in higher information satisfaction across age groups, but was associated with lower comprehension in older women. An experience narrative (vs. factual information) increased satisfaction with attractiveness and emotional support of the information only in older women. A three-way interaction effect was found, suggesting that older women were most satisfied with the comprehensibility of audiovisual factual or textual process narrative information. Younger women were most satisfied with the comprehensibility of audiovisual process narrative or textual factual information. DISCUSSION AND CONCLUSION: Audiovisual and narrative information in an HRC showed beneficial effects on satisfaction measures. In particular, audiovisual information could be incorporated into HRCs to increase satisfaction with information. PUBLIC CONTRIBUTION: Lay persons helped in optimizing the visuals used in the stimulus materials by checking for clarity.

Enhancing patient participation of older migrant cancer patients: needs, barriers, and eHealth.

OBJECTIVES: To gain insight into (1) the unfulfilled instrumental and affective needs of Turkish-Dutch and Moroccan-Dutch older cancer patients/survivors, (2) the barriers perceived by healthcare professionals in fulfilling these needs, and (3) how the Health Communicator, a multilingual eHealth tool, can support the fulfillment of patients'/survivors' needs, and decrease professionals' barriers. DESIGN: We conducted a pre-implementation study of the Health Communicator using semi-structured interviews with Turkish-Dutch (n = 10; mean age = 69.10) and Moroccan-Dutch (n = 9; mean age = 69.33) older cancer patients/survivors, and held two focus groups with general practitioners (GPs; n = 7; mean age 45.14) and oncology nurses (ONs; n = 5; mean age = 49.60). Topic list consisted of questions related to needs and perceived barriers. Analysis was based on grounded theory. The acceptance of the Health Communicator was inquired by questions based on the concepts of the Technology Acceptance Model, and analyzed deductively. RESULTS: Patients/survivors reported unfulfilled needs concerning: (1) information about cancer (treatment), (2) information about the healthcare system, (3) possibilities regarding psychosocial support, and (4) doctor-patient relationship. Among professionals, the main perceived barriers were: (1) patients'/survivors' low health literacy and language barrier, (2) cultural taboo, (3) lack of insight into patients' instrumental needs, and (4) patients'/survivors' lack of trust in Dutch healthcare. Both patients/survivors and professionals thought that implementing the Health Communicator could be effective in fulfilling most of the needs and decreasing the barriers. However, a majority of the patients/survivors were hesitant regarding the use of it, because they found it too difficult to use. Professionals showed a positive intention towards using the Health Communicator. CONCLUSIONS: To enhance patient participation among older migrant cancer patients/survivors, the Health Communicator is, under certain conditions, a promising tool for fulfilling patients'/survivors' unfulfilled instrumental and affective needs and for bridging barriers perceived by professionals.

Unknown, so also unvalued? Blood donation awareness and attitudes of potential donors of Dutch and African descent.

BACKGROUND AND OBJECTIVES: Many Western countries face a shortage of African blood donors, while their specific blood groups are needed to transfuse chronic transfusion patients of similar ethnic background. Blood donation awareness and attitudes greatly impact the decision to become a blood donor, but how they are related and differ across ethnic groups is understudied. This study investigated blood donation awareness and attitudes of individuals of Dutch and African descent in the Netherlands. MATERIALS AND METHODS: Survey data of 257 African and 152 Dutch non-donors measuring donation awareness (i.e. being familiar with the Dutch blood bank organization and knowing others who donated blood), cognitive (evaluative judgements) and affective (emotional reactions) attitudes were included. t-Tests, chi-square tests, linear and logistic regressions were conducted to study differences and associations between donation awareness and attitudes. RESULTS: African individuals were less often aware of the Dutch blood bank organization (43%; p < 0·05) or others who donated blood (51%; p < 0·05) than Dutch individuals (55% and 68%, respectively). African individuals had lower cognitive donation attitudes compared with Dutch individuals (p < 0·001), but no differences were found for affective attitudes (p = 0·55). High donation awareness was associated with higher cognitive (p < 0·001) and affective (p < 0·05) donation attitudes among African minorities, but not among Dutch individuals. CONCLUSION: The lower donation awareness and cognitive attitudes of African minorities should be taken into consideration in donor recruitment. Raising awareness through effective communication strategies might be essential in the donor decision making process of this target group.

Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review.

BACKGROUND: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. METHODS: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. RESULTS: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient's capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. CONCLUSIONS: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.

The Influence of Online Health Information Seeking Before a Consultation on Anxiety, Satisfaction, and Information Recall, Mediated by Patient Participation: Field Study.

BACKGROUND: Today, many cancer patients engage in online health information seeking (OHIS). However, little is known about how patients differ in their OHIS levels. In addition, OHIS might influence patient participation during a consultation with a physician, which might mediate the effects on patient outcomes. OBJECTIVE: The aim of this study is twofold: first, to provide insight into which personal characteristics and psychosocial factors affect patients' OHIS levels and, second, to test the hypothesis that the effects of OHIS on patient outcomes are mediated by patient participation during the consultation. METHODS: Patient participation was operationalized in terms of patients' absolute word count; the relative contribution of the patient, compared with the health care provider; and the number of questions and assertions expressed during the consultation. The patient outcomes measured were anxiety after the consultation, satisfaction with the consultation, and information recall. Participants in this study were patients recently diagnosed with colorectal cancer recruited from 6 hospitals in the Netherlands (n=90). Data were collected using questionnaires and audio-recorded consultations of patients with health care providers before their surgery. RESULTS: The results showed that younger patients, higher educated patients, patients with a monitoring coping style, and patients who experienced more cancer-related stress engaged more in OHIS. In turn, OHIS was related to patient participation in terms of the patient's absolute word count but not to the relative contribution to the consultation or expressing questions and assertions. We did not find a relation between OHIS and anxiety and OHIS and recall mediated by patient participation. However, we found that patients' absolute word count significantly mediated the positive association between OHIS and patients' satisfaction with the consultation. CONCLUSIONS: Results indicate positive implications of OHIS for patients' care experience and, therefore, the importance of helping patients engage in OHIS. However, the results also suggest that OHIS is only successful in increasing a single aspect of patient participation, which might explain the absence of relations with anxiety and recall. The results suggest that more beneficial effects on patient outcomes may be achieved when health care providers support patients in OHIS.

Patients' Convergence of Mass and Interpersonal Communication on an Online Forum: Hybrid Methods Analysis.

BACKGROUND: Patients are increasingly taking an active role in their health. In doing so, they combine both mass and interpersonal media to gratify their cognitive and affective needs (ie, convergence). Owing to methodological challenges when studying convergence, a detailed view of how patients are using different types of media for needs fulfillment is lacking. OBJECTIVE: The aim of this study was to obtain insight into the frequency of reported convergence, how convergence affects what posters write online, motives for posting, and the needs posters are trying to fulfill. METHODS: Using a hybrid method of content analysis and supervised machine learning, this study used naturally available data to fill this research gap. We analyzed opening posts (N=1708) of an online forum targeting cancer patients and their relatives (Kanker.nl). RESULTS: Nearly one-third of the forum opening posts contained signs of convergence in mass or interpersonal media. Posts containing mass media references disclosed less personal information and were more geared toward community enhancement and sharing experiences compared to posts without convergence. Furthermore, compared to posts without signs of convergence, posts that included interpersonal media references disclosed more personal information, and posters were more likely to ask for the experiences of fellow users to fulfill their needs. Within posts containing signs of convergence, posts including interpersonal media references reported fewer shortages of information, disclosed more information about the disease, and were more active in seeking other posters' experiences compared to posts containing mass media references. CONCLUSIONS: The current study highlights the intertwining of media platforms for patients. The insights of this study can be used to adapt the health care system toward a new type of health information-seeking behavior in which one medium is not trusted to fulfill all needs. Instead, providers should incorporate the intertwinement of sources by providing patients with reliable websites and forums through which they can fulfill their needs.

Features of a Patient Portal for Blood Test Results and Patient Health Engagement: Web-Based Pre-Post Experiment.

BACKGROUND: The use of patient portals for presenting health-related patient data, such as blood test results, is becoming increasingly important in health practices. Patient portals have the potential to enhance patient health engagement, but content might be misinterpreted. OBJECTIVE: This study aimed to discover whether the way of presenting blood test outcomes in an electronic patient portal is associated with patient health engagement and whether this varies across different blood test outcomes. METHODS: A 2x3 between-subjects experiment was conducted among members of the Nivel Dutch Health Care Consumer Panel. All participants read a scenario in which they were asked to imagine themselves receiving blood test results. These results differed in terms of the presented blood values (ie, normal vs partially abnormal vs all abnormal) as well as in terms of whether the results were accompanied with explanatory text and visualization. Patient health engagement was measured both before (T0) and after (T1) participants were exposed to their fictive blood test results. RESULTS: A total 487 of 900 invited members responded (response rate 54%), of whom 50.3% (245/487) were female. The average age of the participants was 52.82 years (SD 15.41 years). Patient health engagement saw either a significant decrease or a nonsignificant difference in the experimental groups after viewing the blood test results. The mean difference was smaller in the groups that received blood test results with additional text and visualization (meanT0 5.33, SE 0.08; meanT1 5.14, SE 0.09; mean difference 0.19, SE 0.08, P=.02) compared with groups that received blood test results without explanatory text and visualization (meanT0 5.19, SE 0.08; meanT1 4.55, SE 0.09; mean difference 0.64, SE 0.08, P<.001). Adding text and visualization, in particular, reduced the decline in patient health engagement in participants who received normal results or mixed results (ie, combination of normal and abnormal results). CONCLUSIONS: Adding text and visualization features can attenuate the decrease in patient health engagement in participants who receive outcomes of a blood test via a patient portal, particularly when blood test results are (partly) normal. This suggests that explanatory text and visualization can be reassuring. Future research is warranted to determine whether these results can be generalized to a patient population who receive their actual blood test results.

Development and Evaluation of a Digital Intervention for Fulfilling the Needs of Older Migrant Patients With Cancer: User-Centered Design Approach.

BACKGROUND: Older migrant patients with cancer face many language- and culture-related barriers to patient participation during medical consultations. To bridge these barriers, an eHealth tool called Health Communicator was developed in the Netherlands. Essentially used as a digital translator that can collect medical history information from patients, the Health Communicator did not include an oncological module so far, despite the fact that the prevalence of Dutch migrant patients with cancer is rising. OBJECTIVE: This study aims to systematically develop, implement, and conduct a pilot evaluation of an oncological module that can be integrated into the Health Communicator to stimulate patient participation among older Turkish-Dutch and Moroccan-Dutch patients with cancer. METHODS: The Spiral Technology Action Research model, which incorporates 5 cycles that engage key stakeholders in intervention development, was used as a framework. The listen phase consisted of a needs assessment. The plan phase consisted of developing the content of the oncological module, namely the question prompt lists (QPLs) and scripts for patient education videos. On the basis of pretests in the do phase, 6 audiovisual QPLs on patient rights, treatment, psychosocial support, lifestyle and access to health care services, patient preferences, and clinical trials were created. Additionally, 5 patient education videos were created about patient rights, psychosocial support, clinical trials, and patient-professional communication. In the study phase, the oncological module was pilot-tested among 27 older Turkish-Dutch and Moroccan-Dutch patients with cancer during their consultations. In the act phase, the oncological model was disseminated to practice. RESULTS: The patient rights QPL was chosen most often during the pilot testing in the study phase. Patients and health care professionals perceived the QPLs as easy to understand and useful. There was a negative correlation between the tool's ease of use and patient age. Patients reported that using the module impacted the consultations positively and thought they were more active compared with previous consultations. Health care professionals also found patients to be more active than usual. Health care professionals asked significantly more questions than patients during consultations. Patients requested to see the patients' rights video most often. Patients rated the videos as easy to understand, useful, and informative. Most of the patients wanted to use the tool in the future. CONCLUSIONS: Older migrant patients with cancer, survivors, and health care professionals found the oncological module to be a useful tool and have shown intentions to incorporate it into future consultation sessions. Both QPLs and videos were evaluated positively, the latter indicating that the use of narratives to inform older, low-literate migrant patients with cancer about health-related topics in their mother tongue is a viable approach to increase the effectiveness of health care communication with this target group.

The development of the evidence-based SDMMCC intervention to improve shared decision making in geriatric outpatients: the DICO study.

BACKGROUND: Shared decision making (SDM) contributes to personalized decisions that fit the personal preferences of patients when choosing a treatment for a condition. However, older adults frequently face multiple chronic conditions (MCC). Therefore, implementing SDM requires special features. The aim of this paper is to describe the development of an intervention to improve SDM in older adults with MCC. METHODS: Following the Medical Research Council framework for developing complex interventions, the SDMMCC intervention was developed step-wise. Based on a literature review and empirical research in a co-creation process with end users, we developed training for geriatricians and a preparatory tool for older patients with MCC and informal caregivers. After assessing feasibility, the intervention was implemented in a pilot study (N = 108) in two outpatient geriatric clinics of an academic and a non-academic teaching hospital in Amsterdam, the Netherlands. RESULTS: Key elements of the training for geriatricians include developing skills to involve older adults with MCC and informal caregivers in SDM and following the six-step 'Dynamic model for SDM with frail older patients', as well as learning how to explore personal goals related to quality of life and how to form a partnership with the patient and the informal caregiver. Key elements of the preparatory tool for patients include an explicit invitation to participate in SDM, nomination that the patient's own knowledge is valuable, invitation to form a partnership with the geriatrician, encouragement to share information about daily and social functioning and exploration of possible goals. Furthermore, the invitation of informal caregivers to share their concerns was also a key element. CONCLUSIONS: Through a process of co-creation, both training for geriatricians and a preparatory tool for older adults and their informal caregivers were developed, tailored to the needs of the end users and based on the 'Dynamic model of SDM with frail older patients'.

The supply chain of migrant blood donors: an organisational interview study.

BACKGROUND AND OBJECTIVES: Migrant blood donors are underrepresented worldwide resulting in shortages of compatible blood products. Prior studies focused on individual barriers and motivators of potential blood donors, but no studies addressed organisational factors of the blood supply chain. This study explored the perceptions and experiences in recruitment and retention of migrant - and potentially rare-blood donors among staff members within the blood supply chain and identified obstacles and solutions in this chain. MATERIALS AND METHODS: The study was conducted at Sanquin, the national blood supply organisation of the Netherlands. Qualitative in-depth interviews were done among key staff members (N = 17). Expert validity was assessed in three feedback meetings. RESULTS: Seven staff members believed there is a shortage of migrant blood donors, while five believed there is not. However, there was a consensus that it may become a problem in the future due to demographic changes. The perceived obstacles to recruit and retain migrant donors were difficulties in determining how many migrant donors are needed and recruiting them, excluding potentially rare donors prior to donation, limited use of extended phenotyping and high blood typing and frozen storage costs. The possible solutions to increase blood pool diversity lay in registering donor ethnicity, specialised information provision for donors, reconsidering eligibility criteria and optimising blood typing strategies. CONCLUSION: Whilst recruitment of migrant blood donors is perceived by staff as difficult, various organisational policies and guidelines seem to hinder retention. Improvements in the blood supply chain may be achieved by addressing logistics, current procedures and registration of ethnicity.

Fear and forget: how anxiety impacts information recall in newly diagnosed cancer patients visiting a fast-track clinic.

INTRODUCTION: One-day fast track programs for cancer diagnostics and treatment planning are increasingly being implemented in health care. Fast-track programs are highly effective at reducing waiting times, and thus well received by patients and healthcare providers. However, these programs may also burden patients, as patients generally receive a lot of information from multiple healthcare providers within a short time span. This might increase anxiety and negatively impact recall of medical information in newly diagnosed patients. This study examines whether anxiety influences information recall at the moment of diagnosis, and whether this relation differs for younger and older patients. METHODS: Data were collected from 78 colorectal cancer patients visiting a one-day fast-track multidisciplinary outpatient clinic. All consultations that took place were recorded on a video. Anxiety was measured at baseline (T1) and immediately after consultations (T2) with the STAI-6. Information recall was assessed by telephone within 36-48 hours after patients' visit (T3) using open questions. RESULTS: After consultations (T2), 32% of patients experienced clinical anxiety levels. Patients recalled ∼60% of medical information (T3). Information recall was negatively impacted by anxiety (ß = -.28, p = .011), and negatively related to higher age (ß = -.23, p = .031), and lower education level (ß = .27, p = .013). Although older patients (M = 53.99) recalled 11% less information than younger patients (M = 64.84), age was not related to anxiety and did not moderate the anxiety-recall relationship. CONCLUSION: High levels of anxiety after receiving a cancer diagnosis negatively influence how much information patients remember after visiting a one-day fast-track clinic. This calls for interventions that may reduce patients' anxiety as much as reasonably possible and support patients' information recall. Researchers, practitioners, and hospitals are encouraged to continue exploring ways to optimize information provision to cancer patients in current modern healthcare.

Cancer patients' needs for support in expressing instrumental concerns and emotions.

INTRODUCTION: The aim of our study was to provide an overview of intervention guidelines on how to address patients' practical needs for support in expressing instrumental concerns and emotions regarding medical, psychosocial and practical topics. METHODS: Six focus groups of cancer patients and survivors (N = 39) were organised. An interview guide was created that consisted of three topics: (a) concerns, (b) needs for support, and (c) a Concern Prompt List. Using the framework method, the transcripts were coded and analysed in Atlas T.I. RESULTS: Patients prefer to receive practical and emotional support, help with preparation, prompts/cues, instructions on how to perform the behaviour (i.e., express their concerns or emotions), feedback, a different structure for the consultation and tailoring. Most of these techniques should preferably be delivered via interpersonal communication. Needs sometimes differ for instrumental concerns and emotions. Only some needs for support were exclusively related to instrumental concerns or emotions. The typical needs for support were not solely linked to the medical, psychosocial and practical topics. CONCLUSION: Different needs to express instrumental concerns and emotions throughout the disease trajectory are categorised. These needs provide input for developing interventions to support concern expression.

Optimising eHealth tools for older patients: Collaborative redesign of a hospital website.

Most hospital websites have not been developed in collaboration with patients and, therefore, rarely take into account the preferences and abilities of older patients. This study describes the systematic redesign of an existing hospital website in a co-design process with patients and professional stakeholders (e.g. researchers, physicians, nurses, department heads, policymakers, website designers), with the aim to make it more user-friendly for older patients with colorectal cancer (CRC). The redesign process consisted of three phases, where (I) both existing content and design were evaluated among CRC patients; (II) a prototype website was developed based on these insights; which (III) was evaluated again before making final adjustments. Mixed research methods were used for the redesign process. Specifically, insights from existing literature, outcomes from qualitative and quantitative empirical studies conducted by our team, and expert knowledge from relevant stakeholders, were collected and discussed in multidisciplinary consensus meetings, and served as input for the redesigned website. While the existing website was evaluated poorly, the qualitative evaluation of the prototype website in phase 3 showed that the newly redesigned website was usable for older CRC patients. A practical roadmap on how to collaboratively redesign and optimise existing eHealth tools to make them suitable for and operational in clinical settings is provided.

Realizing better doctor-patient dialogue about choices in palliative care and early phase clinical trial participation: towards an online value clarification tool (OnVaCT).

BACKGROUND: Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients' needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict. METHODS: In the first part, patients' values and preferences and medical oncologists' views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12-18 months before implementation) post-test (12-18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients (> 18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients' values and the decision making process. Three weeks afterwards, decisional conflict will be measured. DISCUSSION: This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and recording that consultation, we are able to link decisional conflict to the decision making process, e.g. the communication during consultation. The study faces challenges such as timely including patients within the short period between referral and first consultation. Furthermore, with new treatments being developed rapidly, molecular stratification may affect the patient populations included in the pre-test and post-test periods. TRIAL REGISTRATION: Netherlands Trial Registry number: NTR7551 (prospective; July 17, 2018).