•Graphical formats presenting health risk information can be beneficial, but are understudied in older populations.•Pie and clock charts are often preferred, but not well understood.•Bar charts are ...often preferred and relatively well understood.•Tables are not often preferred, but very well understood.•Age, numeracy and graph literacy contribute to verbatim knowledge; health literacy and graph literacy to gist knowledge.
To investigate 1) younger (< 65) and older (> 65) adults’ preference for and understanding of graph formats presenting risk information, and 2) the contribution of age, health literacy, numeracy and graph literacy in understanding information.
To assess preferences, participants (n = 219 < 65 and n = 227>65) were exposed to a storyboard presenting six types of graphs. Understanding (verbatim and gist knowledge) was assessed in an experiment using a 6 (graphs: clock, bar, sparkplug, table, pie vs pictograph) by 2 (age: younger <65 vs older >65) between-subjects design.
Most participants preferred clock, pie or bar chart. Pie was not well understood by both younger and older people, and clock not by older people. Bar was fairly well understood in both groups. Table yielded high knowledge scores, particularly in the older group. Lower age, higher numeracy and higher graph literacy contributed to higher verbatim knowledge scores. Higher health literacy and graph literacy were associated with higher gist knowledge.
Although not the preferred format, tables are best understood by older adults.
Graph literacy skills are essential for both verbatim and gist understanding, and are important to take into account when developing risk information.
•This study assesses GPs needs and wishes for a medication-related CDSS.•We provide an in-depth overview of needs and wishes derived from focus groups.•The four main themes are workflow, advice, risk ...presentation, and general factors.•Results can be generalized to the development of other, similar CDSSs.
Shared decision making (SDM) can be beneficial for patients, healthcare professionals, but is often not applied in practice. A clinical decision support system (CDSS) can facilitate SDM. However, CDSS acceptance rates are rather low. One context in which SDM between a general practitioner (GP) and patient regarding medication can be of great value is older patients’ medication-related fall risk. Applying user-centered design to optimally tailor the CDSS to the needs and wishes of GPs can help overcome the low CDSS-acceptance rates. The current study aims to learn GPs’ needs and wishes for a CDSS focused on diminishing medication-related fall risk.
Participants were recruited through the Amsterdam Academic Network of General Practice and were sent a web-lecture as preparation. Three online focus groups with a total of 13 GPs were performed and were led by two moderators. The focus groups were recorded and transcribed verbatim. Transcripts were analyzed using Atlas.ti.
GPs’ views on the workflow, risk presentation and advice of the system were elicited. The fit with the GPs’ workflow was elaborately discussed, for instance how the CDSS could support the selection of patients at risk. GPs articulated a strong preference for a visual risk presentation, in the form of a gradient scale ranging from bright green to dark red. Furthermore, they preferred receiving both medication-related and non-medication-related advice, which should be presented on request.
The findings provide a valuable insight into GPs’ needs and wishes for a CDSS focused on medication-related fall prevention. This will inform the design of a first prototype of the CDSS which will be subjected to usability tests. The findings of this study can also be used to support the development of medication-related CDSSs in a broader context.
Introduction Deprescribing fall-risk increasing drugs (FRIDs) is promising for reducing the risk of falling in older adults. Applying appropriate deprescribing in practice can be difficult due to the ...outcome uncertainties associated with stopping FRIDs. The ADFICE_IT intervention addresses this complexity with a clinical decision support system (CDSS) that facilitates optimum deprescribing of FRIDs by using a fall-risk prediction model, aggregation of deprescribing guidelines, and joint medication management. Methods The development process of the CDSS is described in this paper. Development followed a user-centered design approach in which users and experts were involved throughout each phase. In phase I, a prototype of the CDSS was developed which involved a literature and systematic review, European survey (n = 581), and semi-structured interviews with clinicians (n = 19), as well as the aggregation and testing of deprescribing guidelines and the development of the fall-risk prediction model. In phase II, the feasibility of the CDSS was tested by means of two usability testing rounds with users (n = 11). Results The final CDSS consists of five web pages. A connection between the Electronic Health Record allows for the retrieval of patient data into the CDSS. Key design requirements for the CDSS include easy-to-use features for fast-paced clinical environments, actionable deprescribing recommendations, information transparency, and visualization of the patient's fall-risk estimation. Key elements for the software include a modular architecture, open source, and good security. Conclusion The ADFICE_IT CDSS supports physicians in deprescribing FRIDs optimally to prevent falls in older patients. Due to continuous user and expert involvement, each new feedback round led to an improved version of the system. Currently, a cluster-randomized controlled trial with process evaluation at hospitals in the Netherlands is being conducted to test the effect of the CDSS on falls. The trial is registered with ClinicalTrials.gov (date; 7-7-2022, identifier: NCT05449470).
Previous research has shown that ethnic minority patients participate less during medical encounters than patients from majority populations. Given the positive outcomes of active patient ...participation, such as higher understanding of information and better treatment adherence, interventions are required to enhance ethnic minority patients' participation levels. However, little is known about what patients perceive as barriers hindering their participation. This study therefore aimed to explore differences in perceptions of barriers to patient participation among ethnic minority and ethnic majority patients in general practice. Eight focus-groups with Turkish-Dutch and indigenous Dutch participants were performed. A semi-structured topic-list concerning patients' enabling and predisposing factors to participate, and physicians' responses guided the interviews. Interviews were recorded, transcribed verbatim, and transcripts were analyzed using the constant comparison method described in Grounded Theory. Regarding Turkish-Dutch patients' enabling factors to participate, two perceptions of barriers were identified: (i) low Dutch language proficiency; (ii) a preference for an indirect communication style. Three perceptions of barriers to Turkish-Dutch patients' predisposition to participate were identified: (i) collectivistic values; (ii) power distance; (iii) uncertainty avoidance. Regarding doctors' responses, discrimination was identified among Turkish-Dutch patients as a perception of barrier to their patients' participation. None of these perceptions of barriers emerged among indigenous Dutch patients. This study contributes to our understanding of which perceptions of barriers might impede ethnic minority patients' level of patient participation. To enhance their participation, a combined intervention is needed, tackling the language barrier, raising awareness about cultural differences in values, and increasing doctors' cultural competencies to communicate adequately with ethnic minority patients.
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.
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.
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).
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.
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.
It is often recommended that health information should be simplified for people with low health literacy. However, little is known about whether messages adapted to low health literacy audiences are ...also effective for people with high health literacy, or whether simple messages are counterproductive in this group. Using a two (illustrated vs. text-only) by two (nondifficult vs. difficult text) between-subjects design, we test whether older adults with low (n = 279) versus high health literacy (n = 280) respond differently to colorectal cancer screening messages. Results showed that both health literacy groups recalled information best when the text was nondifficult. Reduced text difficulty did not lead to negative attitudes or less intention to have screening among people with high health literacy. Benefits of illustrations, in terms of improved recall and attitudes, were only found in people with low health literacy who were exposed to difficult texts. This was not found for people with high health literacy. In terms of informed decisions, nondifficult and illustrated messages resulted in the best informed decisions in the low health literacy group, whereas the high health literacy group benefited from nondifficult text in general, regardless of illustrations. Our findings imply that materials adapted to lower health literacy groups can also be used for a more general audience, as they do not deter people with high health literacy.
Many patients with cancer, including older patients (aged ≥65 years), consult the Web to prepare for their doctor's visit. In particular, older patients have varying needs regarding the mode in which ...information is presented (eg, via textual, visual, or audiovisual modes) owing to age-related sensory (eg, impaired vision and hearing) and cognitive decline (eg, reduced processing speed). Therefore, Web-based information targeted at older patient populations is likely to be used and processed more effectively, and evaluated more positively, when tailored to age-related capabilities and preferences. This, in turn, may benefit patient outcomes.
This randomized controlled trial tested the effects of a Web-based tailored educational intervention among newly diagnosed younger (<65 years) and older (≥65 years) patients with cancer. We compared the intervention group who viewed a mode-tailored website (ie, enabling patients to tailor information using textual, visual, and audiovisual modes) with 3 control groups view a nontailored website (ie, text only, text with images, and text with videos). We examined website experience outcomes (ie, website satisfaction, website involvement, knowledge, anxiety, and communication self-efficacy) and consultation experience outcomes (ie, question asking during consultation, anxiety, and information recall).
Patients from a multidisciplinary outpatient clinic (N=232) viewed a mode-tailored or nontailored website as preparation before their hospital consultations to discuss diagnosis and treatment. Data were collected before (T1), during (T2), and after (T3) visitation. Website experience outcomes were assessed with questionnaires (T1). Patients' question asking was coded from videotaped consultations, and anxiety was assessed through a questionnaire (T2). Telephone interviews were conducted to assess knowledge acquired from the website before (T1) and after consultation (T3), and information recall from the consultation (T3).
The preparatory website was well used across all conditions (mean 34 min). Younger patients viewing the mode-tailored website were more satisfied before consultation (P=.02) and reported lower anxiety after consultation (P=.046; vs text only). This pattern was not found in older patients. Mode tailoring yielded no other significant differences in patient outcomes. Regression analyses showed that website involvement (beta=.15; P=.03) and, to a lesser extent, website satisfaction (beta=.15; P=.05) positively associated with knowledge before consultation (T1). In turn, higher knowledge before consultation (beta=.39; P<.001), together with time on the website (beta=.21; P=.002; T1), predicted information recall from consultations (T3). Patients with higher knowledge before consultation (T1) also reported higher knowledge from the website afterward (T3; beta=.22; P=.003).
Offering preparatory online information before consultations benefits information processing and patient outcomes of both younger and older newly diagnosed patients with cancer. Younger patients benefit even more when information is offered in a mode-tailored manner. We discuss the theoretical, methodological, and practical implications for patient-provider communication research in an electronic health era.
Netherlands Trial Register NTR5904; https://www.trialregister.nl/trial/5750.
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.
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.
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.
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.
Netherlands Trial Registry: NL7335, registered on July 17, 2018.
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