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BACKGROUND: We (1) examined the effects of evaluative labels and visual aids on people's understanding, evaluation, and use of the COVID-19 reproduction number (or "r-number"), (2) examined whether people's perceived susceptibility and (intended) adherence to preventive measures changed after being exposed to the r-number, and (3) explored whether these effects and changes depended on people's numeracy skills. METHODS: In an online experiment, participants from a large Dutch representative sample (N = 1,168) received information about the COVID-19 r-number displayed on the corona dashboard of the Dutch Ministry of Health, Welfare and Sport. The r-number was either presented with or without a categorical line display (i.e., evaluative label) and with or without an icon-based tree diagram (i.e., visual aid) explaining how the number works. Regarding people's use of the statistic, we measured perceived susceptibility to COVID-19 and adherence (intention) to five preventive measures before and after exposure to the r-number. After exposure, we also measured participants' understanding, perceived usefulness, affective and cognitive evaluation, and objective numeracy. RESULTS: About 56% of participants correctly interpreted the r-number, with highly numerate people having better understanding than less numerate people. Information about the r-number was perceived as more useful when presented with a visual aid. There were no differences across experimental conditions in people's understanding, affective, and cognitive evaluations. Finally, independent of experimental conditions, intention to adhere to preventive measures was higher after seeing the r-number, but only among highly numerate people. CONCLUSIONS: Although evaluative labels and visual aids did not facilitate people's understanding and evaluation of the r-number, our results show that the statistic is perceived as useful and may be used to stimulate adherence to preventive measures. Policy makers and public health communicators are advised to clearly explain why they are giving these numbers to - especially - the less numerate people, but also how people could use them for behavior change to combat the spread of virus during a pandemic.
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COVID-19 , Humanos , COVID-19/epidemiologia , COVID-19/prevenção & controle , COVID-19/psicologia , Feminino , Masculino , Adulto , Países Baixos/epidemiologia , Pessoa de Meia-Idade , Conhecimentos, Atitudes e Prática em Saúde , Adulto Jovem , Idoso , SARS-CoV-2 , Adolescente , CompreensãoRESUMO
People typically use verbal probability phrases when discussing risks ("It is likely that this treatment will work"), both in written and spoken communication. When speakers are uncertain about risks, they can nonverbally signal this uncertainty by using prosodic cues, such as a rising, question-like intonation or a filled pause ("uh"). We experimentally studied the effects of these two prosodic cues on the listener's perceived speaker certainty and numerical interpretation of spoken verbal probability phrases. Participants (N = 115) listened to various verbal probability phrases that were uttered with a rising or falling global intonation and with or without a filled pause before the probability phrase. For each phrase, they gave a point estimate of their numerical interpretation in percentages and indicated how certain they thought the speaker was about the correctness of the probability phrase. Speakers were perceived as least certain when the verbal probability phrases were spoken with both prosodic uncertainty cues. Interpretation of verbal probability phrases varied widely across participants, especially when rising intonation was produced by the speaker. Overall, high probability phrases (e.g., "very likely") were estimated as lower (and low probability phrases, such as "unlikely," as higher) when they were uttered with a rising intonation. The effects of filled pauses were less pronounced, as were the uncertainty effects for medium probability phrases (e.g., "probable"). These results stress the importance of nonverbal communication when verbally communicating risks and probabilities to people, for example, in the context of doctor-patient communication.
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BACKGROUND: Statistical information (e.g., on long-term survival or side effects) may be valuable for healthcare providers to share with their patients to facilitate shared decision making on treatment options. In this pre-registered study, we assessed cancer survivors' need for generic (population-based) versus personalized (tailored towards patient/tumor characteristics) statistical information after their diagnosis. We examined how information coping style, subjective numeracy, and anxiety levels of survivors relate to these needs and identified statistical need profiles. Additionally, we qualitatively explored survivors' considerations for (not) wanting statistical information. METHODS: Cancer survivors' need for statistics regarding incidence, survival, recurrence, side effects and quality of life were assessed with an online questionnaire. For each of these topics, survivors were asked to think back to their first cancer diagnosis and to indicate their need for generic and personalized statistics on a 4-point scale ('not at all'- 'very much'). Associations between information coping style, subjective numeracy, and anxiety with need for generic and personalized statistics were examined with Pearson's correlations. Statistical need profiles were identified using latent class analysis. Considerations for (not) wanting statistics were analyzed qualitatively. RESULTS: Overall, cancer survivors (n = 174) had a higher need for personalized than for generic statistics (p < .001, d = 0.74). Need for personalized statistics was associated with higher subjective numeracy (r = .29) and an information-seeking coping style (r = .41). Three statistical need profiles were identified (1) a strong need for both generic and personalized statistics (34%), (2) a stronger need for personalized than for generic statistics (55%), and (3) a little need for both generic and personalized statistics (11%). Considerations for wanting personalized cancer statistics ranged from feelings of being in control to making better informed decisions about treatment. Considerations for not wanting statistics related to negative experience with statistics and to the unpredictability of future events for individual patients. CONCLUSIONS: In light of the increased possibilities for using personalized statistics in clinical practice and decision aids, it appears that most cancer survivors want personalized statistical information during treatment decision-making. Subjective numeracy and information coping style seem important factors influencing this need. We encourage further development and implementation of data-driven personalized decision support technologies in oncological care to support patients in treatment decision making.
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Sobreviventes de Câncer , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Neoplasias , Tomada de Decisões , Humanos , Neoplasias/terapia , Qualidade de Vida , Inquéritos e Questionários , SobreviventesRESUMO
AIMS: Individualized information about the risk of incontinence after prostatectomy could help patients in shared decision-making. METHODS: We compared a historical control cohort (n = 254; between June 2016 and 2017) that received standardized information about the risk of incontinence after robot-assisted radical prostatectomy (RARP) with a prospective patient cohort (n = 254; between June 2017 and May 2018) that received individualized information of the chance of recovery of incontinence within 6 months postoperatively based on the continence prediction tool (CPRED). We measured switch in treatment choice, health-related quality of life (QoL) in both cohorts and the accuracy of the CPRED tool. RESULTS: Patients in the individualized information group with RARP as initial preference switched more often to another treatment than patients who received standardized information (16% vs. 5%; p = 0.001). Patients in the individualized information group with a high risk of incontinence and with RARP as initial preference switched more often to other treatments than patients in intermediate/low risk of incontinence (35% vs. 9.8%; p = 0.001). Patients with a low risk of incontinence choosing RARP after individualized information were less likely to use more than one diaper a day at any time postoperative (p = 0.001) compared to men with an intermediate/high incontinence risk. Overall QoL was worse in patients with incontinence than patients with continence 6 and 12 months after RARP (respectively; p < 0.0001 and p = 0.007). CONCLUSION: Personalized information about the risk of incontinence after RARP makes more patients reconsidering their initial treatment preference. The CPRED correlated strongly with continence outcome after RARP and is a useful tool for shared decision-making.
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Neoplasias da Próstata , Procedimentos Cirúrgicos Robóticos , Incontinência Urinária , Humanos , Masculino , Complicações Pós-Operatórias , Estudos Prospectivos , Prostatectomia/efeitos adversos , Neoplasias da Próstata/cirurgia , Qualidade de Vida , Recuperação de Função Fisiológica , Procedimentos Cirúrgicos Robóticos/efeitos adversos , Resultado do Tratamento , Incontinência Urinária/etiologiaRESUMO
BACKGROUND: Given the major changes in internet use for health communication, the objective of the current study was to compare the internet use and wishes of cancer survivors between 2005 and 2017. METHODS: The authors drew a sample of 390 patients in 2005 and 539 patients in 2017 who were diagnosed with breast (128 patients in 2005 and 143 patients in 2017), prostate (96 patients in 2005 and 126 patients in 2017), or gynecologic (89 patients in 2005 and 188 patients in 2017) cancer or lymphoma (77 patients in 2005 and 82 patients in 2017) in 4 different hospitals for the periods 2002 through 2004 and 2014 through 2016. These patients were sent a paper-based questionnaire that contained 45 questions regarding demographics and 4 functions of internet use: content, communication, community, and e-health. RESULTS: The response in 2017 (53%) was lower than that in 2005 (75%). Survivors browsed the internet most frequently to search for information regarding cancer shortly after being diagnosed and while waiting for treatment. There was little change noted with regard to the relative importance attached to the various subjects. In 2017, significant increases were evident with regard to finances (+33%), health care insurance (+29%), and genetics and/or heritability (+27%). The wishes expressed in 2005 by patients were realized in part in 2017. CONCLUSIONS: A significant sample of cancer survivors in the Netherlands have indicated that the internet is an important source of information regarding their illness. However, little change was evident over the past 15 years with regard to patients' priorities regarding their wishes for internet use. The wishes of users in 2005 were found to accurately reflect the internet use of the majority of patients in 2017. The results of the current study support the belief that health care professionals should expand their online services and tailor them toward the needs and wishes of their patients.
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Sobreviventes de Câncer/psicologia , Comunicação em Saúde/tendências , Comportamento de Busca de Informação , Internet/tendências , Neoplasias/terapia , Idoso , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/mortalidade , Neoplasias/psicologia , Países Baixos , Inquéritos e Questionários/estatística & dados numéricosRESUMO
BACKGROUND: The increased availability of patient reported outcome data makes it feasible to provide patients tailored risk information of cancer treatment side effects. However, it is unclear how such information influences patients' risk interpretations compared to generic population-based risks, and which message format should be used to communicate such individualized statistics. METHODS: A web-based experiment was conducted in which participants (n = 141) read a hypothetical treatment decision-making scenario about four side effect risks of adjuvant chemotherapy for advanced colon cancer. Participants were cancer patients or survivors who were recruited from an online Dutch cancer patient panel. All participants received two tailored risks (of which the reference class was based on their age, gender and tumor stage) and two generic risks conveying the likelihood of experiencing the side effects. The risks were presented either in words-only ('common' and 'very common'), or in a combination of words and corresponding numerical estimates ('common, 10 out of 100' and 'very common, 40 out of 100'). Participants' estimation of the probability, accuracy of their estimation, and perceived likelihood of occurrence were primary outcomes. Perceived personal relevance and perceived uncertainty were secondary outcomes. RESULTS: Tailored risks were estimated as higher and less accurate than generic risks, but only when they were presented in words; Such differences were not found in the verbal and numerical combined condition. Although tailoring risks did not impact participants' perceived likelihood of occurrence, tailored risks were perceived as more personally relevant than generic risks in both message formats. Finally, tailored risks were perceived as less uncertain than generic risks, but only in the verbal-only condition. CONCLUSIONS: Considering current interest in the use of personalized decision aids for improving shared decision-making in oncology, it is important that clinicians consider how tailored risks of treatment side effects should be communicated to patients. We recommend both clinicians who communicate probability information during consultations, and decision aid developers, that verbal descriptors of tailored risks should be supported by numerical estimates of risks levels, to avoid overestimation of risks.
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Antineoplásicos/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Comunicação em Saúde/normas , Neoplasias/tratamento farmacológico , Educação de Pacientes como Assunto/métodos , Antineoplásicos/uso terapêutico , Tomada de Decisão Compartilhada , Feminino , Humanos , Masculino , Medição de Risco , Fatores de RiscoRESUMO
People's risk perception of COVID-19 is an important predictor for adopting protective behavior. Although risk perceptions, and factors influencing these, may vary between countries, less attention has been paid to differences between adjacent regions from neighboring countries. In the midst of the first wave of the corona outbreak (March-April-May 2020), we measured risk perceptions as perceived threat (consisting of perceived severity and susceptibility) among university students (N = 668) in two connected countries: the Netherlands and Belgium. Theory-based predictor variables included experiential, efficacy-related, socio-cultural, cognitive, and demographic factors. While demographic variables and country were not significant predictors of perceived threat level, all other constructs were. Personal and indirect experiences with COVID-19, as well as higher scores on personal (self) efficacy to carry out recommended preventive behaviors were all associated with higher perceived threat. However, low collective efficacy and lower levels of trust in government were both also significantly associated with higher perceived threat, as was a low level of "lack of COVID-19 knowledge". These results hold implications for suitable risk communication strategies for increasing students' COVID-19 risk perceptions.
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COVID-19 , Humanos , COVID-19/epidemiologia , Estudos Transversais , Países Baixos/epidemiologia , Bélgica/epidemiologia , Universidades , Estudantes , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: We investigated how healthcare professionals (HPs) communicate personalized risks of treatment side-effects to patients with localized prostate cancer during consultations, and explored how these patients perceive and use such risks during treatment decision-making. METHODS: Patient consultations with nurse practitioners and urologists discussing personalized risks of urinary incontinence after prostatectomy were audiotaped, transcribed, and coded. Patients (n = 27) were then interviewed to explore their perceptions and use of personalized side-effect risks. RESULTS: HPs explained personalized risks by discussing risk factors, which was appreciated and recalled by patients. Personalized risks were typically communicated both numerically and verbally (70%). When using numbers, HPs always used percentages, but rarely used natural frequencies (14%). Uncertainty was disclosed in only 34% of consultations. One-third of patients used personalized risks in their treatment decision-making by either switching to another treatment or sticking to their initial preference. CONCLUSIONS: Patients value and use personalized side-effect risks during treatment decision-making. Clearly explaining the relationship between risk factors and personalized risk estimates may help patients understand and recall those. Practice implications HPs should not only give patients specific and precise numerical risk information, but should also put effort in explaining how the personalized side-effect risks are determined.
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Tomada de Decisões , Neoplasias da Próstata , Comunicação , Humanos , Masculino , Percepção , Neoplasias da Próstata/terapia , Pesquisa QualitativaRESUMO
BACKGROUND: Most Western countries have websites that provide information on cancer and the opportunity to participate in online cancer communities (OCCs). The number of patients with cancer that participate in these OCCs is growing. These patients are relatively easy to approach for research purposes. OBJECTIVE: The objective of this study is to determine the differences and similarities between survivors of cancer in population-based samples and survivors participating in OCCs who use the internet in relation to their illness. METHODS: In 2017, we drew a sample of 539 population-based patients and 531 OCC patients. The population-based patients were sent a paper-based questionnaire, and the OCC patients were sent the same questionnaire on the web. In the questionnaire, we asked patients about their sociodemographics, internet use, sources of information, media use, and wishes regarding future internet use for health care-related purposes, and the effect of internet use on their health care consumption. RESULTS: The response rate of population-based internet users was 47% (233/496), and that of the OCC group was 40.3% (214/531). The OCC group had a significantly higher education level (P<.001), was younger (P<.001), had more survivors that were employed (P<.001), and attached greater importance to the internet (171/214, 79.9% vs 126/233, 54.1%; P<.001) and fellow survivors (107/214, 50% vs 60/233, 25.8%; P<.001). Compared with the population-based group, the OCC group reported more intensive internet use immediately after diagnosis, during treatment, and during follow-up (P<.001 in each case). There were similarities in terms of the relative importance that survivors attach to the various sources of information, the topics on which they seek information, and their wishes for future eHealth possibilities. The OCC group reported a greater need to participate in a web-based class or chat with others (92/214, 43% vs 44/233, 18.9%). CONCLUSIONS: We conclude that survivors who are members of an OCC are not representative of survivors of cancer in general. There are significant differences in sociodemographic characteristics, internet use during their treatment journey, internet search frequency during their cancer journey, and participation wishes. Using web-based information and communication can support shared decision-making and may facilitate the active participation of patients during their treatment. For research purposes, it is important to take the bias in OCC groups into account.
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BACKGROUND: Disclosure of cancer statistics (eg, survival or incidence rates) based on a representative group of patients can help increase cancer survivors' understanding of their own diagnostic and prognostic situation, and care planning. More recently, there has been an increasing interest in the use of cancer registry data for disclosing and communicating personalized cancer statistics (tailored toward personal and clinical characteristics) to cancer survivors and relatives. OBJECTIVE: The aim of this study was to explore breast cancer (BCa) and prostate cancer (PCa) survivor needs and preferences for disclosing (what) and presenting (how) personalized statistics from a large Dutch population-based data set, the Netherlands Cancer Registry (NCR). METHODS: To elicit survivor needs and preferences for communicating personalized NCR statistics, we created different (non)interactive tools visualizing hypothetical scenarios and adopted a qualitative multimethod study design. We first conducted 2 focus groups (study 1; n=13) for collecting group data on BCa and PCa survivor needs and preferences, using noninteractive sketches of what a tool for communicating personalized statistics might look like. Based on these insights, we designed a revised interactive tool, which was used to further explore the needs and preferences of another group of cancer survivors during individual think-aloud observations and semistructured interviews (study 2; n=11). All sessions were audio-recorded, transcribed verbatim, analyzed using thematic (focus groups) and content analysis (think-aloud observations), and reported in compliance with qualitative research reporting criteria. RESULTS: In both studies, cancer survivors expressed the need to receive personalized statistics from a representative source, with especially a need for survival and conditional survival rates (ie, survival rate for those who have already survived for a certain period). Personalized statistics adjusted toward personal and clinical factors were deemed more relevant and useful to know than generic or average-based statistics. Participants also needed support for correctly interpreting the personalized statistics and putting them into perspective, for instance by adding contextual or comparative information. Furthermore, while thinking aloud, participants experienced a mix of positive (sense of hope) and negative emotions (feelings of distress) while viewing the personalized survival data. Overall, participants preferred simplicity and conciseness, and the ability to tailor the type of visualization and amount of (detailed) statistical information. CONCLUSIONS: The majority of our sample of cancer survivors wanted to receive personalized statistics from the NCR. Given the variation in patient needs and preferences for presenting personalized statistics, designers of similar information tools may consider potential tailoring strategies on multiple levels, as well as effective ways for providing supporting information to make sure that the personalized statistics are properly understood. This is encouraging for cancer registries to address this unmet need, but also for those who are developing or implementing personalized data-driven information tools for patients and relatives.
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CONTEXT: Despite increasing interest in the development and use of decision aids (DAs) for patients with localized prostate cancer (LPC), little attention has been paid to communicative aspects (CAs) of such tools. OBJECTIVE: To identify DAs for LPC treatment, and review these tools for various CAs. MATERIALS AND METHODS: DAs were identified through both published literature (MEDLINE, Embase, CINAHL, CENTRAL, and PsycINFO; 1990-2018) and online sources, in compliance with the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines. Identified DAs were reviewed for the International Patient Decision Aid Standards criteria, and analyzed on CAs, including information presentation, personalization, interaction, information control, accessibility, suitability, and source of information. Nineteen DAs were identified. RESULTS: International Patient Decision Aid Standards scores varied greatly among DAs. Crucially, substantial variations in use of CAs by DAs were identified: (1) few DAs used visual aids to communicate statistical information, (2) none were personalized in terms of outcome probabilities or mode of communication, (3) a minority used interactive methods to elicit patients' values and preferences, (4) most included biased cross tables to compare treatment options, and (5) issues were observed in suitability and accessibility that could hinder implementation in clinical practice. CONCLUSIONS: Our review suggests that DAs for LPC treatment could be further improved by adding CAs such as personalized outcome predictions and interaction methods to the DAs. Clinicians who are using or developing such tools might therefore consider these CAs in order to enhance patient participation in treatment decision-making.
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Comunicação , Tomada de Decisões , Técnicas de Apoio para a Decisão , Participação do Paciente , Neoplasias da Próstata/terapia , Humanos , Masculino , Relações Médico-Paciente , Neoplasias da Próstata/psicologia , Resultado do TratamentoRESUMO
The present study investigated the interplay between selective inhibition (the ability to suppress specific competing responses) and nonselective inhibition (the ability to suppress any inappropriate response) during single word production. To this end, we combined two well-established research paradigms: the picture-word interference task and the stop-signal task. Selective inhibition was assessed by instructing participants to name target pictures (e.g., dog) in the presence of semantically related (e.g., cat) or unrelated (e.g., window) distractor words. Nonselective inhibition was tested by occasionally presenting a visual stop-signal, indicating that participants should withhold their verbal response. The stop-signal was presented early (250 ms) aimed at interrupting the lexical selection stage, and late (325 ms) to influence the word-encoding stage of the speech production process. We found longer naming latencies for pictures with semantically related distractors than with unrelated distractors (semantic interference effect). The results further showed that, at both delays, stopping latencies (i.e., stop-signal RTs) were prolonged for naming pictures with semantically related distractors compared to pictures with unrelated distractors. Taken together, our findings suggest that selective and nonselective inhibition, at least partly, share a common inhibitory mechanism during different stages of the speech production process.