Effect of a Skills Training for Oncologists and a Patient Communication Aid on Shared Decision Making About Palliative Systemic Treatment: A Randomized Clinical Trial.

BACKGROUND: Palliative systematic treatment offers uncertain and often limited benefits, and the burden can be high. Hence, treatment decisions require shared decision making (SDM). This trial examined the independent and combined effect of an oncologist training and a patient communication aid on SDM. METHODS: In this multicenter randomized controlled trial with four parallel arms (2016-2018), oncologists (n = 31) were randomized to receive SDM communication skills training or not. The training consisted of a reader, two group sessions, a booster session, and a consultation room tool (10 hours). Patients (n = 194) with advanced cancer were randomized to receive a patient communication aid or not. The aid consisted of education on SDM, a question prompt list, and a value clarification exercise. The primary outcome was observed SDM as rated by blinded observers from audio-recorded consultations. Secondary outcomes included patient-reported SDM, patient and oncologist satisfaction, patients' decisional conflict, patient quality of life 3 months after consultation, consultation duration, and the decision made. RESULTS: The oncologist training had a large positive effect on observed SDM (Cohen's d = 1.12) and on patient-reported SDM (d = 0.73). The patient communication aid did not improve SDM. The combination of interventions did not add to the effect of training oncologists only. The interventions affected neither patient nor oncologist satisfaction with the consultation nor patients' decisional conflict, quality of life, consultation duration, or the decision made. CONCLUSION: Training medical oncologists in SDM about palliative systemic treatment improves both observed and patient-reported SDM. A patient communication aid does not. The incorporation of skills training in (continuing) educational programs for medical oncologists is likely to stimulate the widely advocated uptake of shared decision making in clinical practice. TRIAL REGISTRATION: Netherlands Trial Registry NTR 5489. IMPLICATIONS FOR PRACTICE: Treatment for advanced cancer offers uncertain and often small benefits, and the burden can be high. Hence, treatment decisions require shared decision making (SDM). SDM is increasingly advocated for ethical reasons and for its beneficial effect on patient outcomes. Few initiatives to stimulate SDM are evaluated in robust designs. This randomized controlled trial shows that training medical oncologists improves both observed and patient-reported SDM in clinical encounters (n = 194). A preconsultation communication aid for patients did not add to the effect of training oncologists. SDM training effectively changes oncologists' practice and should be implemented in (continuing) educational programs.

Risk factors of unmet needs among women with breast cancer in the post-treatment phase.

OBJECTIVE: Unmet health care needs require additional care resources to achieve optimal patient well-being. In this nationwide study we examined associations between a number of risk factors and unmet needs after treatment among women with breast cancer, while taking into account their health care practices. We expected that more care use would be associated with lower levels of unmet needs. METHODS: A multicenter, prospective, observational design was employed. Women with primary breast cancer completed questionnaires 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. Direct and indirect associations between sociodemographic and clinical risk factors, distress, care use, and unmet needs were investigated with structural equation modeling. RESULTS: Seven hundred forty-six participants completed both questionnaires (response rate 73.7%). The care services received were not negatively associated with the reported levels of unmet needs after treatment. Comorbidity was associated with higher physical and daily living needs. Higher age was associated with higher health system-related and informational needs. Having had chemotherapy and a mastectomy were associated with higher sexuality needs and breast cancer-specific issues, respectively. A higher level of distress was associated with higher levels of unmet need in all domains. CONCLUSIONS: Clinicians may use these results to timely identify which women are at risk of developing specific unmet needs after treatment. Evidence-based, cost-effective (online) interventions that target distress, the most influential risk factor, should be further implemented and disseminated among patients and clinicians.

Health care use and remaining needs for support among women with breast cancer in the first 15 months after diagnosis: the role of the GP.

BACKGROUND: The number of women with breast cancer in general practice is rising. To address their needs and wishes for a referral, GPs might benefit from more insight into women's health care practices and need for additional support. OBJECTIVE: To examine the prevalence of health care use and remaining needs among women with breast cancer in the first 15 months after diagnosis. METHODS: In this multicentre, prospective, observational study women with breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved through chart reviews. The prevalence of types of health care used and remaining needs related to medical, psychosocial, paramedical and supplementary service care (such as home care), was examined with descriptive analyses. RESULTS: Seven hundred forty-six women completed both questionnaires. At both assessments patients reported that they had most frequent contact with medical and paramedical providers, independent of types of treatment received. Three to fifteen percent of the patients expressed a need for more support. Prominent needs included a wish for more frequent contact with a physiotherapist, a clinical geneticist and a psychologist. Patients also wanted more help for chores around the house, particularly in the early post-treatment phase. CONCLUSION: A small but relevant percentage of women with breast cancer report having unmet needs. GPs may need to be particularly watchful of their need for more support from specific providers. Future research into the necessity of structural needs assessment among cancer patients in general practice is warranted.

Training for Medical Oncologists on Shared Decision-Making About Palliative Chemotherapy: A Randomized Controlled Trial.

BACKGROUND: Systemic treatment for advanced cancer offers uncertain and sometimes limited benefit, while the burden can be high. This study examines the effect of shared decision-making (SDM) training for medical oncologists on observed SDM in standardized patient assessments. MATERIALS AND METHODS: A randomized controlled trial comparing training with standard practice was conducted. Medical oncologists and oncologists-in-training (n = 31) participated in a video-recorded, standardized patient assessment at baseline (T0) and after 4 months (T1, after training). The training was based on a four-stage SDM model and consisted of a reader, two group sessions (3.5 hours each), a booster session (1.5 hours), and a consultation card. The primary outcome was observed SDM as assessed with the Observing Patient Involvement scale (OPTION12) coded by observers blinded for arm. Secondary outcomes were observed SDM per stage, communication skills, and oncologists' satisfaction with communication. RESULTS: The training had a significant and large effect on observed SDM in the simulated consultations (Cohen's f = 0.62) and improved observed SDM behavior in all four SDM stages (f = 0.39-0.72). The training improved oncologists' information provision skills (f = 0.77), skills related to anticipating/responding to emotions (f = 0.42), and their satisfaction with the consultation (f = 0.53). CONCLUSION: Training medical oncologists in SDM about palliative systemic treatment improves their performance in simulated consultations. The next step is to examine the effect of such training on SDM in clinical practice and on patient outcomes. IMPLICATIONS FOR PRACTICE: Systemic treatment for advanced cancer offers uncertain and sometimes limited benefit, while the burden can be high. Hence, applying the premises of shared decision-making (SDM) is recommended. SDM is increasingly advocated based on the ethical imperative to provide patient-centered care and the increasing evidence for beneficial patient outcomes. Few studies examined the effectiveness of SDM training in robust designs. This randomized controlled trial demonstrated that SDM training (10 hours) improves oncologists' performance in consultations with standardized patients. The next step is to examine the effect of training on oncologists' performance and patient outcomes in clinical practice.

Studying medical communication with video vignettes: a randomized study on how variations in video-vignette introduction format and camera focus influence analogue patients' engagement.

BACKGROUND: Video vignettes are used to test the effects of physicians' communication on patient outcomes. Methodological choices in video-vignette development may have far-stretching consequences for participants' engagement with the video, and thus the ecological validity of this design. To supplement the scant evidence in this field, this study tested how variations in video-vignette introduction format and camera focus influence participants' engagement with a video vignette showing a bad news consultation. METHODS: Introduction format (A = audiovisual vs. B = written) and camera focus (1 = the physician only, 2 = the physician and the patient at neutral moments alternately, 3 = the physician and the patient at emotional moments alternately) were varied in a randomized 2 × 3 between-subjects design. One hundred eighty-one students were randomly assigned to watch one of the six resulting video-vignette conditions as so-called analogue patients, i.e., they were instructed to imagine themselves being in the video patient's situation. Four dimensions of self-reported engagement were assessed retrospectively. Emotional engagement was additionally measured by recording participants' electrodermal and cardiovascular activity continuously while watching. Analyses of variance were used to test the effects of introduction format, camera focus and their interaction. RESULTS: The audiovisual introduction induced a stronger blood pressure response during watching the introduction (p = 0.048, [Formula: see text]= 0.05) and the consultation part of the vignette (p = 0.051, [Formula: see text]= 0.05), when compared to the written introduction. With respect to camera focus, results revealed that the variant focusing on the patient at emotional moments evoked a higher level of electrodermal activity (p = 0.003, [Formula: see text]= 0.06), when compared to the other two variants. Furthermore, an interaction effect was shown on self-reported emotional engagement (p = 0.045, [Formula: see text]= 0.04): the physician-only variant resulted in lower emotional engagement if the vignette was preceded by the audiovisual introduction. No effects were shown on the other dimensions of self-reported engagement. CONCLUSIONS: Our findings imply that using an audiovisual introduction combined with alternating camera focus depicting patient's emotions results in the highest levels of emotional engagement in analogue patients. This evidence can inform methodological decisions during the development of video vignettes, and thereby enhance the ecological validity of future video-vignettes studies.

Older Patients' Recall of Online Cancer Information: Do Ability and Motivation Matter More than Chronological Age?

This study proposes and tests a model to provide a more comprehensive understanding of the contribution of chronological age versus age-related ability and motivation factors in explaining recall of online cancer information among older patients (n = 197). Results revealed that recall is not a matter of chronological age per se, but rather a matter of ability and motivation. Age-related ability and motivation factors explained 37.9% of the variance in recall. Health literacy, involvement with the webpage, and satisfaction with the emotional support were positively associated with recall. Furthermore, recall was negatively related to frailty, anger, future time perspective, and perceived cognitive load. The findings pose relevant opportunities for tailoring interventions to improve online information provision for older cancer patients.

Are psychophysiological arousal and self-reported emotional stress during an oncological consultation related to memory of medical information? An experimental study.

Patients forget 20-80% of information provided during medical consultations. The emotional stress often experienced by patients during consultations could be one of the mechanisms that lead to limited recall. The current experimental study therefore investigated the associations between (analog) patients' psychophysiological arousal, self-reported emotional stress and their (long term) memory of information provided by the physician. One hundred and eighty one cancer-naïve individuals acted as so-called analog patients (APs), i.e. they were instructed to watch a scripted video-recoding of an oncological bad news consultation while imagining themselves being in the patient's situation. Electrodermal and cardiovascular activity (e.g. skin conductance level and heart rate) were recorded during watching. Self-reported emotional stress was assessed before and after watching, using the STAI-State and seven Visual Analog Scales. Memory, both free recall and recognition, was assessed after 24-28 h. Watching the consultation evoked significant psychophysiological and self-reported stress responses. However, investigating the associations between 24 psychophysiological arousal measures, eight self-reported stress measures and free recall and recognition of information resulted in one significant, small (partial) correlation (r = 0.19). Considering multiple testing, this significant result was probably due to chance. Alternative analytical methods yielded identical results, strengthening our conclusion that no evidence was found for relationships between variables of interest. These null-findings are highly relevant, as they may be considered to refute the long-standing, but yet untested assumption that a relationship between stress and memory exists within this context. Moreover, these findings suggest that lowering patients' stress levels during the consultation would probably not be sufficient to raise memory of information to an optimal level. Alternative explanations for these findings are discussed.

Shared decision making about palliative chemotherapy: A qualitative observation of talk about patients' preferences.

BACKGROUND: Particularly at the end of life, treatment decisions should be shared and incorporate patients' preferences. This study examines elaboration and preference construction. AIM: To examine the values, appraisals and preferences that patients express, as well as the oncologists' communicative behaviour that facilitates these expressions in consultations on palliative chemotherapy. DESIGN: Verbatim transcripts of audio-recorded consultations ( n = 60) were analysed in MAXqda10 software. Two independent coders identified and categorised patients' preference-related utterances and oncologists' utterances, preceding and following such expressions. SETTING/PARTICIPANTS: Cancer patients ( n = 41) with a median life expectancy <1 year and oncologists ( n = 13) meeting with them in either initial or evaluative follow-up consultations. RESULTS: Most frequent were patients' expressions of treatment preferences (65% of consultations), often the simple wish to have treatment. Expressions of underlying values (48%) and appraisals of treatment aspects (50%) were less common. Most preference-related utterances concerned single statements (59%); in 51% of the consultations, true dialogue was observed. Preference-related utterances were least common in follow-up consultations concerning stable disease or response. Preference-related fragments were patient-initiated (42%), oncologist-facilitated (28%) or oncologist-invited (30%). Oncologist responses likely to trigger more preference-related talk were showing empathy, checking and probe questioning. Likely to reduce space were providing information, personally agreeing and neutral responses. CONCLUSION: Elaboration and joint preference construction is not standard practice in consultations on palliative chemotherapy. Oncologists may benefit from realising this and training skills that support this key step of shared decision making. Also, repeated shared decision making throughout the course of palliative chemotherapy should be stimulated.

Predictors of enduring clinical distress in women with breast cancer.

To date, little is known about enduring clinical distress as measured with the commonly used distress thermometer. We therefore used the distress thermometer to examine: (a) the prevalence of enduring clinical distress, distress-related problems, and subsequent wish for referral of women with breast cancer, and (b) sociodemographic, clinical, and psychosocial predictors of enduring clinical distress. The study had a multicenter, prospective, observational design. Patients with primary breast cancer completed a questionnaire at 6 and 15 months postdiagnosis. Medical data were retrieved from chart reviews. Enduring clinical distress was defined as heightened distress levels over time. The prevalence of enduring clinical distress, problems, and wish for referral was examined with descriptive analyses. Associations between predictors and enduring clinical distress were examined with multivariate analyses. One hundred sixty-four of 746 patients (22 %) reported having enduring clinical distress at 6 and 15 months postdiagnosis. Of these, 10 % wanted to be referred for care. Fatigue was the most frequently reported problem by patients with and without clinical distress, at both time points. Lack of muscle strength (OR = 1.82, 95 % CI 1.12-2.98), experience of a low level of life satisfaction (OR = 0.77, 95 % CI 0.67-0.89), more frequent cancer worry (OR = 1.40, 95 % CI 1.05-1.89), and neuroticism (OR = 1.09, 95 % CI 1.00-1.18) were predictors of enduring clinical distress. In conclusion, one in five women with breast cancer develops enduring clinical distress. Oncologists, nurse practitioners, and cancer nurses are advised to use single-item questions about distress and distress-related problems to ensure timely detection of high-risk patients. Providers should also routinely assess fatigue and its causes, as fatigue is the most frequently reported distress-related problem over time.

Oncologists' non-verbal behavior and analog patients' recall of information.

Background Information in oncological consultations is often excessive. Those patients who better recall information are more satisfied, less anxious and more adherent. Optimal recall may be enhanced by the oncologist's non-verbal communication. We tested the influence of three non-verbal behaviors, i.e. eye contact, body posture and smiling, on patients' recall of information and perceived friendliness of the oncologist. Moreover, the influence of patient characteristics on recall was examined, both directly or as a moderator of non-verbal communication. Material and methods Non-verbal communication of an oncologist was experimentally varied using video vignettes. In total 194 breast cancer patients/survivors and healthy women participated as 'analog patients', viewing a randomly selected video version while imagining themselves in the role of the patient. Directly after viewing, they evaluated the oncologist. From 24 to 48 hours later, participants' passive recall, i.e. recognition, and free recall of information provided by the oncologist were assessed. Results Participants' recognition was higher if the oncologist maintained more consistent eye contact (ß = 0.17). More eye contact and smiling led to a perception of the oncologist as more friendly. Body posture and smiling did not significantly influence recall. Older age predicted significantly worse recognition (ß = -0.28) and free recall (ß = -0.34) of information. Conclusion Oncologists may be able to facilitate their patients' recall functioning through consistent eye contact. This seems particularly relevant for older patients, whose recall is significantly worse. These findings can be used in training, focused on how to maintain eye contact while managing computer tasks.

Deciding about (neo-)adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making.

BACKGROUND: The first step in shared decision making (SDM) is creating choice awareness. This is particularly relevant in consultations concerning preference-sensitive treatment decisions, e.g. those addressing (neo-)adjuvant therapy. Awareness can be achieved by explicitly stating, as the 'reason for encounter', that a treatment decision needs to be made. It is unknown whether oncologists express such reason for encounter. This study aims to establish: 1) if 'making a treatment decision' is stated as a reason for the encounter and if not, what other reason for encounter is provided; and 2) whether mentioning that a treatment decision needs to be made is associated with enhanced patient involvement in decision making. MATERIAL AND METHODS: Consecutive first consultations with: 1) radiation oncologists and rectal cancer patients; or 2) medical oncologists and breast cancer patients, facing a preference-sensitive treatment decision, were audiotaped. The tapes were transcribed and coded using an instrument developed for the study. Oncologists' involvement of patients in decision making was coded using the OPTION-scale. RESULTS: Oncologists (N = 33) gave a reason for encounter in 70/100 consultations, usually (N = 52/70, 74%) at the start of the consultation. The reason for encounter stated was 'making a treatment decision' in 3/100 consultations, and 'explaining treatment details' in 44/100 consultations. The option of foregoing adjuvant treatment was not explicitly presented in any consultation. Oncologist' involvement of patients in decision making was below baseline (Md OPTION-score = 10). Given the small number of consultations in which the need to make a treatment decision was stated, we could not investigate the impact thereof on patient involvement. CONCLUSION: This study suggests that oncologists rarely express that a treatment decision needs to be made in consultations concerning preference-sensitive treatment decisions. Therefore, patients might not realize that foregoing (neo-)adjuvant treatment is a viable choice. Oncologists miss a crucial opportunity to facilitate SDM.

Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives.

Cancer genetic counselees receive individualized information regarding heightened risks and medical recommendations which is also relevant for their at-risk relatives. Unfortunately, counselees often insufficiently inform these relatives. We designed an intervention aimed at improving counselees' knowledge regarding which at-risk relatives to inform and what information to disclose, their motivation to disclose, and their self-efficacy. The intervention, offered by telephone by trained psychosocial workers, is based on the principles of Motivational Interviewing. Phase 1 of the intervention covers agenda setting, exploration, and evaluation, and phase 2 includes information provision, enhancing motivation and self-efficacy, and brainstorming for solutions to disseminate information within the family. Fidelity and acceptability of the intervention were assessed using recordings of intervention sessions and by counselee self-report. A total of 144 counselees participated. Psychosocial workers (n = 5) delivered the intervention largely as intended. Counselees highly appreciated the content of the intervention and the psychosocial workers who delivered the intervention. In the sessions, psychosocial workers provided additional and/or corrective information, and brainstorming for solutions was performed in 70 %. These results indicate that this intervention is feasible and warrants testing in clinical practice. For this, a randomized controlled trial is currently in progress to test the intervention's efficacy.

Investigating the Potential Contribution of Patient Rating Sites to Hospital Supervision: Exploratory Results From an Interview Study in the Netherlands.

BACKGROUND: Over the last decades, the patient perspective on health care quality has been unconditionally integrated into quality management. For several years now, patient rating sites have been rapidly gaining attention. These offer a new approach toward hearing the patient's perspective on the quality of health care. OBJECTIVE: The aim of our study was to explore whether and how patient reviews of hospitals, as reported on rating sites, have the potential to contribute to health care inspector's daily supervision of hospital care. METHODS: Given the unexplored nature of the topic, an interview study among hospital inspectors was designed in the Netherlands. We performed 2 rounds of interviews with 10 senior inspectors, addressing their use and their judgment on the relevance of review data from a rating site. RESULTS: All 10 Dutch senior hospital inspectors participated in this research. The inspectors initially showed some reluctance to use the major patient rating site in their daily supervision. This was mainly because of objections such as worries about how representative they are, subjectivity, and doubts about the relevance of patient reviews for supervision. However, confrontation with, and assessment of, negative reviews by the inspectors resulted in 23% of the reviews being deemed relevant for risk identification. Most inspectors were cautiously positive about the contribution of the reviews to their risk identification. CONCLUSIONS: Patient rating sites may be of value to the risk-based supervision of hospital care carried out by the Health Care Inspectorate. Health care inspectors do have several objections against the use of patient rating sites for daily supervision. However, when they are presented with texts of negative reviews from a hospital under their supervision, it appears that most inspectors consider it as an additional source of information to detect poor quality of care. Still, it should always be accompanied and verified by other quality and safety indicators. More research on the value and usability of patient rating sites in daily hospital supervision and other health settings is needed.

All eyes on the patient: the influence of oncologists' nonverbal communication on breast cancer patients' trust.

Trust in the oncologist is crucial for breast cancer patients. It reduces worry, enhances decision making, and stimulates adherence. Optimal nonverbal communication by the oncologist, particularly eye contact, body posture, and smiling, presumably benefits patients' trust. We were the first to experimentally examine (1) how the oncologist's nonverbal behavior influences trust, and (2) individual differences in breast cancer patients' trust. Analogue patients (APs) viewed one out of eight versions of a video vignette displaying a consultation about chemotherapy treatment. All eight versions varied only in the oncologist's amount of eye contact (consistent vs. inconsistent), body posture (forward leaning vs. varying), and smiling (occasional smiling vs. no smiling). Primary outcome was trust in the observed oncologist (Trust in Oncologist Scale). 214 APs participated. Consistent eye contact led to stronger trust (ß = -.13, p = .04). This effect was largely explained by lower educated patients, for whom the effect of consistent eye contact was stronger than for higher educated patients (ß = .18, p = .01). A forward leaning body posture did not influence trust, nor did smiling. However, if the oncologist smiled more, he was perceived as more friendly (rs = .31, p < .001) and caring (rs = .18, p = .01). Older (ß = .17, p = .01) and lower educated APs (ß = -.25, p < .001) were more trusting. Trust was weaker for more avoidantly attached APs (ß = -.16, p = .03). We experimentally demonstrated the importance of maintaining consistent eye contact for breast cancer patients' trust, especially among lower educated patients. These findings need to be translated into training for oncologists in how to optimize their nonverbal communication with breast cancer patients while simultaneously managing increased time pressure and computer use during the consultation.

Breast cancer specialists' views on and use of risk prediction models in clinical practice: a mixed methods approach.

PURPOSE: Risk prediction models (RPM) in breast cancer quantify survival benefit from adjuvant systemic treatment. These models [e.g. Adjuvant! Online (AO)] are increasingly used during consultations, despite their not being designed for such use. As still little is known about oncologists' views on and use of RPM to communicate prognosis to patients, we investigated if, why, and how they use RPM. METHODS: We disseminated an online questionnaire that was based on the literature and individual and group interviews with oncologists. RESULTS: Fifty-one oncologists (partially) completed the questionnaire. AO is the best known (95%) and most frequently used RPM (96%). It is used to help oncologists decide whether or not to recommend chemotherapy (>85%), to inform (86%) and help patients decide about treatment (>80%), or to persuade them to follow the proposed course of treatment (74%). Most oncologists (74%) believe that using AO helps patients understand their prognosis. CONCLUSION: RPM have found a place in daily practice, especially AO. Oncologists think that using AO helps patients understand their prognosis, yet studies suggest that this is not always the case. Our findings highlight the importance of exploring whether patients understand the information that RPM provide.

Predictors of Health Care Use of Women with Breast Cancer: A Systematic Review.

The aim of this study was to identify predictors of health care use among women with breast cancer by conducting a systematic review. Potentially relevant studies were identified by searching the PubMed, EMBASE, PsycINFO, CINAHL, and Cochrane Library databases. Also, backward and forward citation searches were performed. Studies were selected if they addressed associations between (a) sociodemographic, enabling (e.g., income), clinical and health related, or psychosocial predictors, and (b) medical, psychosocial, or paramedical health care use of adult women with breast cancer. The health care types of interest were hospital utilization and provider visits. An evaluation of aggregated findings was performed to determine consistency of findings between studies. Sixteen studies were included in the review. Higher age, a more advanced cancer stage, more comorbid disorders, having a mastectomy, a lymph node dissection, and breast reconstruction were consistently associated with higher hospital utilization. None of the patient characteristics were consistently associated with medical, psychosocial, or paramedical health care use-but psychosocial or paramedical associations were also less examined. In conclusion, sociodemographic, medical, and treatment-related factors were consistently associated with (higher) health care use of breast cancer patients. Practitioners may use this information to anticipate future use of subgroups of patients. Results may also be used in the development of interventions that target relevant predictors, to reduce patients' health care use and accompanying health care costs. Furthermore, more research is needed to identify predictors of psychosocial and paramedical health care use.

Development of the Informing Relatives Inventory (IRI): Assessing Index Patients' Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives.

BACKGROUND: Despite the use of genetic services, counselees do not always share hereditary cancer information with at-risk relatives. Reasons for not informing relatives may be categorized as a lack of: knowledge, motivation, and/or self-efficacy. PURPOSE: This study aims to develop and test the psychometric properties of the Informing Relatives Inventory, a battery of instruments that intend to measure counselees' knowledge, motivation, and self-efficacy regarding the disclosure of hereditary cancer risk information to at-risk relatives. METHOD: Guided by the proposed conceptual framework, existing instruments were selected and new instruments were developed. We tested the instruments' acceptability, dimensionality, reliability, and criterion-related validity in consecutive index patients visiting the Clinical Genetics department with questions regarding hereditary breast and/or ovarian cancer or colon cancer. RESULTS: Data of 211 index patients were included (response rate = 62%). The Informing Relatives Inventory (IRI) assesses three barriers in disclosure representing seven domains. Instruments assessing index patients' (positive) motivation and self-efficacy were acceptable and reliable and suggested good criterion-related validity. Psychometric properties of instruments assessing index patients knowledge were disputable. These items were moderately accepted by index patients and the criterion-related validity was weaker. CONCLUSION: This study presents a first conceptual framework and associated inventory (IRI) that improves insight into index patients' barriers regarding the disclosure of genetic cancer information to at-risk relatives. Instruments assessing (positive) motivation and self-efficacy proved to be reliable measurements. Measuring index patients knowledge appeared to be more challenging. Further research is necessary to ensure IRI's dimensionality and sensitivity to change.

Trends in patient satisfaction in Dutch university medical centers: room for improvement for all.

BACKGROUND: Results of patient satisfaction research provide hospitals areas for quality improvement. Although it may take several years to achieve such improvement, not all hospitals analyze changes in patient satisfaction over time structurally. Consequently, they lack information from patients' perspective on effectiveness of improvement programs. This study presents a trend analysis of the patient satisfaction scores in the eight university medical centers in the Netherlands. We focus on the trends, effect size and its consequences for improving patient-centered care. METHODS: The Core Questionnaire for the assessment of Patient satisfaction (COPS) was used in four large-scale nationwide comparative studies (2003-2009). Data were analyzed at a national level, and for each academic hospital separately. We analyzed the polynomial contrasts in the four measurements by performing an univariate analysis of variance (ANCOVA). The trend lines are presented graphically, with the means, SD, F-statistics and the standardized effect size including confidence intervals expressed by Cohen's d. By analyzing the (logit transformed) percentages of very satisfied patients we examined the change scores. RESULTS: The dataset consisted of 58,055 inpatients and 79,498 outpatients. Significant positive trends were found on national level and hospital level, especially in outpatient departments. Improvement was especially seen on the dimensions "information" and "discharge and aftercare". Not only university medical centers with a lower score at the start, but surprisingly some best practices and university medical centers with a high initial score improved. CONCLUSIONS: We conclude that significant trends in patient satisfaction can be identified on a national and a hospital level, in inpatient and outpatient departments. The observed effect size expressed by Cohen's d is rather small. Hospitals have found room for improvement, even hospitals with initial high satisfaction scores. We recommend that hospitals monitor their patient satisfaction scores over time and relate these to quality interventions and organizational changes. Furthermore, we recommend to expand the research to subgroups of unsatisfied patients to improve patient-centered care for all patients.

Online Health Information Tool Effectiveness for Older Patients: A Systematic Review of the Literature.

Online health information tools (OHITs) have been found to be effective in improving health outcomes. However, the effectiveness of these tools for older patients has been far from clear. This systematic literature review therefore provides an overview of online health information tool effectiveness for older patients using a two-dimensional framework of OHIT functions (i.e., providing information, enhancing information exchange, and promoting self-management) and outcomes (i.e., immediate, intermediate, and long-term outcomes). Comprehensive searches of the PubMed, EMBASE, and PsycINFO databases are conducted to identify eligible studies. Articles describing outcomes of patient-directed OHITs in which a mean sample or subgroup of age ≥65 years was used are included in the literature review. A best evidence synthesis analysis provides evidence that OHITs improve self-efficacy, blood pressure, hemoglobin levels, and cholesterol levels. Limited evidence is found in support of OHIT effects on knowledge, perceived social support, health service utilization, glycemic control, self-care adherence, exercise performance, endurance, and quality of life. OHITs seem promising tools to facilitate immediate, intermediate, and long-term outcomes in older patients by providing information, enhancing information exchange, and promoting self-management. However, future studies should evaluate the effectiveness of OHITs for older patients to achieve stronger levels of evidence.

The effect of modality and narration style on recall of online health information: results from a Web-based experiment.

BACKGROUND: Older adults are increasingly using the Internet for health information; however, they are often not able to correctly recall Web-based information (eHealth information). Recall of information is crucial for optimal health outcomes, such as adequate disease management and adherence to medical regimes. Combining effective message strategies may help to improve recall of eHealth information among older adults. Presenting information in an audiovisual format using conversational narration style is expected to optimize recall of information compared to other combinations of modality and narration style. OBJECTIVE: The aim of this paper is to investigate the effect of modality and narration style on recall of health information, and whether there are differences between younger and older adults. METHODS: We conducted a Web-based experiment using a 2 (modality: written vs audiovisual information) by 2 (narration style: formal vs conversational style) between-subjects design (N=440). Age was assessed in the questionnaire and included as a factor: younger (<65 years) versus older (≥65 years) age. Participants were randomly assigned to one of four experimental webpages where information about lung cancer treatment was presented. A Web-based questionnaire assessed recall of eHealth information. RESULTS: Audiovisual modality (vs written modality) was found to increase recall of information in both younger and older adults (P=.04). Although conversational narration style (vs formal narration style) did not increase recall of information (P=.17), a synergistic effect between modality and narration style was revealed: combining audiovisual information with conversational style outperformed combining written information with formal style (P=.01), as well as written information with conversational style (P=.045). This finding suggests that conversational style especially increases recall of information when presented audiovisually. This combination of modality and narration style improved recall of information among both younger and older adults. CONCLUSIONS: We conclude that combining audiovisual information with conversational style is the best way to present eHealth information to younger and older adults. Even though older adults did not proportionally recall more when audiovisual information was combined with conversational style than younger adults, this study reveals interesting implications for improving eHealth information that is effective for both younger and older adults.