Patients In Medical Decisions Research Articles

Gender awareness among general practitioners in France: a cross sectional study using the Nijmegen Gender Awareness in Medicine Scale (N-GAMS)

Gender is a key determinant of health and healthcare use. The question of whether physicians are aware of gender issues is important to avoid gender bias in medical practice. This study aimed to validate the Nijmegen Gender Awareness in Medicine Scale (N-GAMS) in a representative population of French general practitioners (GPs) and to analyze their gender sensitivity and the presence of gender stereotypes among them. The N-GAMS, already validated in medical students, measures gender awareness through 3 subscores: gender sensitivity (GS) and gender-role ideology towards patients (GRIP) and doctors (GRID) (gender stereotypes). After translation into French, it was distributed to 900 GPs. The scale was validated through exploratory factor analysis (EFA). Psychometric properties were tested. Multivariate linear regressions were conducted to explore the associations between GPs’ characteristics and N-GAMS subscores. EFA identified 3 meaningful factors consistent with prior theory. Subscores exhibited good internal consistency. The main findings were that GRIP was significantly higher in older physicians, in male physicians, among those who less involved their patients in decisions, and those who were not training supervisors. For GRID, results were quite similar to those of GRIP. GS was significantly higher for physicians working in health centres or medical homes and for those with gynecological practices but lower when they less involved patients in medical decisions. This study suggests that it is necessary to teach gender issues not only in medical schools but also as part of continuing medical education.

Perspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention

Background Adolescents and young adults with sickle cell disease (AYA-SCD) have higher rates of mortality and the highest rates of healthcare utilization compared with older and younger SCD patients. The transition period between pediatric and adult care for AYA-SCD is well recognized as a critical window because it represents the intersection of normal adolescent development, change in healthcare access and increased clinical manifestations of disease. Interventions that support AYA-SCD during this time are crucial to improving outcomes. Hallmarks of transition readiness amongst AYA-SCD include self-efficacy (i.e., patients' ability to manage their disease), active participation in shared decision-making (SDM), and adequate disease specific knowledge. Although videogames have been shown to positively affect adolescents' behavior and health outcomes, there has been no study evaluating this technology for improving transition readiness in AYA-SCD. Our objective was to learn AYA-SCD patients' and clinicians' experiences with AYA-SCD managing their disease at home and making medical decisions as they transition from pediatric to adult care, including whether a videogame intervention can positively impact these skills. Methods We conducted individual, semi-structured interviews with purposively sampled patients (AYA-SCD ages 15 to 26 with any genotype of SCD) and clinicians who provide care or support to AYA-SCD (pediatric and adult hematology providers, pediatric and general emergency medicine physicians and nurses, child life specialists) at an urban, quaternary care hospital. Interviews elicited patients' and clinicians' experiences with AYA-SCD in the clinic, emergency department, and/or hospital, including the transition from pediatric to adult care, barriers and facilitators to successful home management, and their perspectives on SDM and a videogame intervention. To identify themes related to patients' and clinicians' experiences with AYA-SCD managing their disease at home and making medical decisions, we conducted an inductive analysis following the principles of grounded theory until data saturation was reached for both groups. For patients' and clinicians' perspectives on a videogame intervention, we used a deductive analysis. Three investigators independently coded all transcripts to identify themes, with discrepancies resolved by consensus. Results We interviewed 16 patients and 21 clinicians. Participants identified two main themes: 1) self-efficacy to manage their disease successfully as they transition from pediatric to adult care, and 2) the importance of patient engagement in making medical decisions (Table 1; representative quotations). Sub-themes were environmental, clinician, and patient factors that served as barriers and facilitators to achieving self-efficacy and patient engagement in decision-making. Facilitators including having social support, the importance of education about SCD and SDM before adolescence, clinicians having good communication, building trust, listening, and involving patients in medical decisions, and patient self-advocacy by voicing their needs and being empowered to actively participate in medical decisions. Barriers included lack of support and resources, adolescent behaviors/traits, co-dependency on a parent/caregiver, pediatric vs. adult culture, and stigma/implicit bias/provider judgement (Figure 1; conceptual model). Participants were supportive of a videogame intervention to improve self-efficacy and engagement in decision-making (Table 1), with the primary goal being education and insight into SCD, and the secondary goal being distraction during pain crises. Conclusions AYA-SCD patients and their clinicians identified self-efficacy in successful disease management and patient engagement in medical decision-making as two primary areas of importance in the transition from pediatric to adult care. Several barriers and facilitators to achieving self-efficacy and patient engagement are potential targets for interventions to improve these skills in AYA-SCD. Overall, patients and clinicians supported the concept of a videogame to support self-efficacy and patient engagement to improve transition readiness. Future studies will focus on the design, development, and implementation of a videogame intervention which centers the key themes identified in this study.

An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community.

To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs. Cross-sectional online survey. Online. A cross-sectional online survey was adapted from the existing literature on patient support groups and modified for CRS patients. The survey was posted on multiple Facebook/Reddit groups aimed at providing support toward patients with CRS. Survey data was collected over 3months and analyzed thereafter. There were 127 total participants. The majority were female (65.35%), white (76.98%), and the median age was 38 years. Just under half of patients had nasal polyps (48.67%) and 54.54% had undergone surgery. Many participants (69.42%) reported engaging in the OSC at least multiple times per month. The most common reason for joining an OSC was to learn tips on how to manage CRS (89.7%) and the most achieved goal from membership was hearing from others undergoing a similar experience (79.5%). Involvement in an OSC impacted knowledge of CRS in 87.41% of participants. Most users (81.1%) would recommend membership in an OSC and 54.33% reported the OSC influenced their medical decision-making. A majority of patients with CRS who frequently engage in an OSC for CRS have a positive experience. OSCs are a resource that CRS patients utilize to manage their disease.

Tuuned in: use of an online contraceptive decision aid for women increases reproductive self-efficacy and knowledge; results of an experimental clinical trial

BackgroundDigital decision aids are becoming increasingly common in many areas of healthcare. These aids are designed to involve patients in medical decision making, with the aim of improving patient outcomes while decreasing healthcare burden. Previously developed contraceptive-based decision aids have been found to be effective at increasing women’s knowledge about reproductive health and contraception. Here, we sought to evaluate the effectiveness of a novel contraceptive-based decision aid at increasing women’s self-efficacy and knowledge about their reproductive health and contraceptive options, as well as their perceptions of their learning. This study was registered as a clinic trial at ClinicalTrials.gov (Contraception Decision Aid Use and Patient Outcomes, ID# NCT05177783) on 05/01/2022.MethodsThe Tuune® contraceptive decision aid’s effectiveness was evaluated by conducting an experiment in which 324 women were assigned to use the Tuune® decision aid or a control decision aid. Primary outcomes included reproductive health self-efficacy, reproductive health and contraceptive knowledge, and perceptions of learning. Secondary analyses examined whether prior experience using hormonal contraceptives moderated the relationship between decision aid and each outcome measure.ResultsWomen assigned to use the Tuune® decision aid exhibited greater reproductive health self-efficacy, greater knowledge about reproductive health and contraception, and perceived having learned more than women assigned to use the control decision aid (ps ≤ .029). This pattern was also observed in women with previous contraceptive use experience, where women using Tuune® reported better outcomes than women using the control aid, regardless of their history of hormonal contraceptive use experience, although this interaction was not significant (p = .089).ConclusionsUse of the Tuune® contraceptive-based decision aid improved each of the predicted outcomes relative to a control decision aid. This suggests that use of the Tuune® contraceptive-based decision aid is well poised to increase women’s confidence and knowledge about contraceptive use and may also reduce burden on healthcare systems.

Study of Knowledge, Attitude and Practice Regarding Adolescent’s Rights to Autonomy and Confidentiality among Physicians Working in Ain Shams University Hospitals

Abstract Background Legally, adolescents are not capable of making medical decisions and considered incompetent because of their age. However, psychological studies found adolescents are capable of making informed choices about involvement in health care and research. Aim This study aimed at assessment of physicians knowledge, attitude and practice regarding sharing of adolescents in medical decision making and their right in confidentiality. Methods An online self -administered structured questionnaire was used for 384 physicians working at Ain Shams University Hospitals during the period from December 2019 to December 2020. Results Most of the participants were knowledgeable of variable ages of legal consent between countries (54.7%) while 46.97% of them know the legal age for consent in Egypt. Most of them were aware that they should obtain consent from the adolescents before their involvement in clinical research (87.7%); their duty to breach the confidentiality of the patient’s medical information if this is necessary to protect him/ her or the surrounding people (85.4%). About 45% of them agreed with the adolescent’s ability to make a sound decision regarding his/her health and 47.1% of them were neutral with the adolescent’s right to refuse the proposed treatment even if this against parents’ decision. Most of them agreed with the adolescent’s right to confidentiality if there is no risk for the patient or the surrounding persons (64.3%). Almost all of them obtain consent from both the adolescent patients and their parents/guardians (either always (69.8%) or sometimes (26.3%,)); and give the adolescent an opportunity to speak in private (either always (43.5%) or sometimes (55.2%)). Conclusion Although of the participants’ positive attitude toward sharing the adolescent patient in medical decisions- making, and their right to confidentiality, their practice showed variable responses. This may be due to deficient knowledge of the laws and absence of definite ethical guidelines for health care of adolescent patients. Recommendation Training of the physicians on judgment and assessment of adolescent patient’s capacity is an important step to ensure their involvement in decision making. Also, it is important to formulate ethical guidelines for management of adolescent patients in our community.

Balancing hope at the end of life organisational conditions for spiritual care in palliative homecare in Sweden

The aim of this article is to examine how norms and values related to culture, religion, and spirituality were experienced and expressed by healthcare professionals caring for patients at the end of life in Advanced Care at Home (ACH) in Sweden, with a focus on how organisational aspects enabled or hindered spiritual care. Founded on participant observation with physicians and exploratory short-term fieldwork conducted between June and December 2019, findings show that physicians experienced communication problems relating to both religion and culture, yet were skilled in balancing hope and existential needs, medically and practically. However, all healthcare encompassed a secular bias complicating abilities to “read” religious and spiritual needs, reflecting a general lack of religious literacy among healthcare providers. ACH physicians and the palliative care team were facilitated by several organisational and structural conditions necessary for person-centred and spiritual care, including the non-hierarchical and interprofessional composition of care teams, continuity of care, space for physicians' reflection, and engagement in dialogue with patients and their relatives. Furthermore, the 6S palliative care ideology was promoted within the team, as was a creative outlook in supporting patients and their relatives' hope at the end of life. Nevertheless, interest varied. Some physicians were more skilled in dialogue, creativity and including the patient in medical decisions. Others were less focused on the person and maintained a strong emphasis on medicine, practicalities, and biomedical testing. Further, structural and organisational hindrances to person-centred and spiritual care were illuminated, including a lack of routines surrounding protecting the patient's needs in transitions from hospital to ACH. Even though the organisation of care in ACH provided conditions for person-centredness, the lack of religious literacy caused further hindrances to spiritual care. We conclude that, without religious literacy, and the ability to holistically meet patients' spiritual needs, care cannot be truly person-centred.

Systematic Evaluation of YouTube Content on Testosterone Therapy: The Proliferation of Bro-Science

ABSTRACT Introduction There has been a marked increase in commercial advertising and prescriptions for testosterone therapy over the last two decades. Patients are increasingly turning to the internet and social media as their initial source for medical information. Objective We sought to investigate the quality of information for testosterone therapy on YouTube. Methods A YouTube search was performed using the keyword ‘testosterone therapy’. The top 150 most viewed videos were then assessed for inclusion criteria. Videos were evaluated using the DISCERN consumer health evaluation technique and scored via the Patient Education Materials Assessment Tool (PEMAT) by five reviewers. Videos that exceeded twenty minutes in duration, were non-English, were duplicated, consisted of unrelated content, or were presentations intended for medical professionals only, were excluded. Results A total of 88 videos met inclusion criteria with a cumulative total of 14,282,476 views. Median video length was 9 minutes (range 1-20). Sixty-eight percent (n=60) of videos were produced by individual YouTubers with no medical background. Twenty-three percent of videos featured a physician with only 7% featuring a urologist. Median DISCERN quality score was 2 (1-5) with 76% of videos rated as moderate to poor quality (DISCERN ≤3). Videos featuring a physician had better content quality compared to videos that did not (DISCERN 3.5 vs 2, p<0.01). Median PEMAT understandability and actionability scores were 81 (31-100) and 50 (0-100) respectively. Forty-five percent of videos included the YouTubers’ personal experiences of undergoing testosterone therapy. Eight (9%) videos discussed testosterone therapy in females. Forty-three percent of videos discussed side effects of testosterone therapy; however, only 10 % (n=9) mentioned infertility as a negative effect. Seventeen percent (n=15) of videos contained potentially misleading information with a total of 3,537,609 views. Conclusions Less than a quarter of the most popular videos on YouTube discussing testosterone therapy featured a physician. Less than half of them discussed side effects of testosterone therapy with only ten percent mentioning infertility. With the increasing role of the internet and social media in patient medical decision making, a stronger physician presence on YouTube and other platforms can help deliver more accurate and accessible information to the public. Disclosure No

“She's Not Ready to Give Up Yet!”: When a Family Member Overrides the Patient's Medical Decisions

Autonomy, which gives individuals the right to make informed decisions about their medical treatment, is a central principle in Western bioethics. However, we often encounter patients for whom a family member seems to dominate medical decision-making, to the extent that clinicians become concerned that the patient is subject to excessive pressure or even coercion. In this article, we describe one such case and how we assess a decision-making process that involves family influence. This entails acknowledging that many individuals weigh their family members’ preferences and/or well-being heavily in making medical decisions, and family norms for decision-making differ. A family member who tells their loved one “You can't give up now” is typically not ursurping the patient's liberty to make a different decision. However, there are some family influences which may be autonomy-limiting, including credible threats, or in situations of abuse. Aside from these scenarios, our role is not to alter a couple's long-standing dynamics and decision-making processes. However, for the patient who wants to assert herself, we can set the stage in a family meeting and amplify her voice. We must also attend to the emotional level of family members’ statements. “I won't let you give up” might be more a statement of grief rather than a true reflection of their values or intent. Supporting the family member's coping may help to bring together what initially seem to be divergent goals. Exploring these decision-making dynamics is key to providing good palliative care.

Utilization and Influence of Online Support Communities in Idiopathic Subglottic Stenosis Patients.

To determine the factors that shape utilization of social media-based online support communities (OSCs) and study the influence of these communities on medical decision-making in patients with Idiopathic Subglottic Stenosis (iSGS). Survey study. A survey investigating OSC use was sent to the 1,056 members of the North American Airway Collaborative (NoAAC) iSGS1000 cohort in January 2018. Responses were merged with the existing NoAAC data set containing extensive demographic data, disease-specific history, and responses to validated patient-reported outcome measures. A total of 755 individuals with iSGS and mean age of 51.8 ± 11.6 years were included (99% female, 98% white, 63% college educated) and 58% were OSC users. Younger age, female gender, and college education were each associated with OSC use (P< .05). Users spent 2.5 ± 3.3 hours per week on the platforms. Time spent on OSC was not associated with total number of prior treatments. Higher disease anxiety (FoP-Q, R= 0.26, P< .001), lower social support (MOS, R= -0.12, P= .037), and lower level of shared-decision-making with the treating physician (SDM-Q9, R= -0.16, P= .007) were weakly associated with more hours spent engaging an OSC. OSC use influenced treatment and physician choice in 35% and 26% of users, respectively. Increased time spent on OSC use was associated with increased influence on patient medical decisions regarding treatment, surgery, and physician choice (P< .05). OSC engagement is common in patients with iSGS. Disease anxiety, social support, and relationship with the physician may influence OSC utilization. More OSC engagement weakly associated with greater OSC influence on patient medical decision-making. NA. Laryngoscope, 131:1821-1827, 2021.

Do Physicians' Attitudes towards Patient-Centered Communication Promote Physicians' Intention and Behavior of Involving Patients in Medical Decisions?

Promoting patient-centered communication among physicians is one core strategy for improving physician–patient relationships and patient outcomes. Our study aims to understand the physicians’ attitudes towards patient-centered communication and its effects on physicians’ intention and behavior of involving patients in medical decisions in primary care in China. One cross-sectional study was conducted in primary facilities in Hubei province, China, from December 2019 to January 2020, where physicians’ attitudes towards patient-centered communication were measured by the Chinese-revised patient–practitioner orientation scale. Multilevel ordinal logistic regression was conducted for estimating the effects of physicians’ attitudes on their intention and behavior of patient involvement in medical decisions. Six hundred and seventeen physicians were investigated for the main study. Physicians had a medium score of patient-centered communication (3.78, SD = 0.56), with relatively high caring subscale score (4.59, SD = 0.64), and low sharing subscale score (3.09, SD = 0.75). After controlling physicians’ covariates, physicians’ attitudes towards patient-centered communication was significantly associated with a higher intention of involving patients in medical decisions (OR > 1, p = 0.020). Physicians’ positive attitudes towards patient-centered communication affected their intention of involving patients in medical decisions, which implies the importance of taking the physicians’ attitudes into account for the accomplishment of patient involvement processes.

Influence of advance directives on reducing aggressive measures during end-of-life cancer care: A systematic review.

Although the literature recognizes the participation of patients in medical decisions as an important indicator of quality, there is a lack of consensus regarding the influence of advance directives (ADs) on reducing aggressive measures during end-of-life care involving cancer patients. A systematic review was conducted to analyze the influence of ADs on reducing aggressive end-of-life care measures for cancer patients. We searched the Medline, Embase, Web of Science, and Lilacs databases for studies published until March 2018 using the following keywords, without language restrictions: "advance directives," "living wills," "terminal care," "palliative care," "hospice care," and "neoplasms." Article quality was assessed using study quality assessment tools from the Department of Health and Human Services (NHLBI). A total of 1,489 studies were identified; 7 met the inclusion criteria. The studies were recently published (after 2014, 71.4%). Patients with ADs were more likely to die at the site of choice (n = 3) and received less chemotherapy in the last 30 days (n = 1). ADs had no impact on intensive care unit admission (n = 1) or hospitalization (n = 1). One study found an association between ADs and referral to palliative care, but other did not find the same result. Of the seven articles found, four demonstrated effects of ADs on the reduction in aggressive measures at the end of life of cancer patients. Heterogeneity regarding study design and results and poor methodological quality are challenges when drawing conclusions.

Attitudes to Clinical Pig Kidney Xenotransplantation among Medical Providers and Patients.

In addition to governmental regulation and scientific advancements, the World Health Organization requires extensive review of local opinions before initiating clinical trials of xenotransplantation (XTx). The purpose of this study was to assess the attitudes of health care providers and patients regarding XTx. An anonymous Likert-scale survey regarding attitudes toward XTx was distributed to pre- and post-kidney transplant patients, nephrologists, transplant surgeons, and nurses ("providers"). Patient and provider responses were described and compared. Regression analysis using patients' responses was performed to identify factors associated with XTx acceptance. Eighty percent (32/40) of providers and 69% (113/163) of patients were agreeable to clinical XTx if the risks and results were likely to be similar to kidney allotransplantation (P<0.05). Kidney providers rated the influence of religious beliefs in medical decisions (45% versus 15%) and genetic engineering (43% versus 25%) as being more important than did patients (P<0.05). A small proportion in both groups (<15%) reported concerns about (1) potential personality changes, (2) how others would interact, (3) a perception of being "less human," or (4) morals or ethics. Logistic regression found that the odds of patients accepting XTx were greater if they had no religious concerns (OR, 25.10; 95% CI, 2.59 to 243.00), but acceptance was less likely if they were not willing to use XTx as a bridge to allotransplantation (OR, 0.18; 95% CI, 0.51 to 0.70). (1) If outcomes were similar to allotransplantation, XTx support was strong among both providers and patients; (2) providers overestimated the influence of religious beliefs and genetic engineering on patient medical decisions, although religious beliefs are associated with XTx acceptance; (3) XTx use as a bridge to allotransplant was associated with XTx acceptance; and (4) psychosocial concerns were low for either group. Future studies among other communities are warranted to assess if similar attitudes exist.

The Chaplain Family Project: Development, Feasibility, and Acceptability of an Intervention to Improve Spiritual Care of Family Surrogates

In the Intensive Care Unit (ICU), family members experience psychological and spiritual distress as they cope with fear, grief, and medical decisions for patients. The study team developed and pilot tested a semistructured chaplain intervention that included proactive contact and spiritual assessment, interventions, and documentation. An interdisciplinary team developed the intervention, the Spiritual Care Assessment and Intervention (SCAI) Framework. Three chaplains delivered the intervention to surrogates in two ICUs. There were 25 of 73 eligible patient/surrogate dyads enrolled. Surrogates had a mean age of 57.6, were 84% female and 32% African American. The majority (84%) were Protestant. All received at least one chaplain visit and 19 received three visits. All agreed they felt supported by the chaplains, and qualitative comments showed spiritual and emotional support were valued. A semistructured spiritual care intervention for ICU surrogates is feasible and acceptable. Future work is needed to demonstrate the intervention improves outcomes for surrogates and patients.

Predicting the preferences for involvement in medical decision making among patients with mental disorders.

BackgroundThe involvement of patients in medical decision making has been investigated widely in somatic diseases. However, little is known about the preferences for involvement and variables that could predict these preferences in patients with mental disorders.ObjectiveThis study aims to determine what roles mentally ill patients actually want to assume when making medical decisions and to identify the variables that could predict this role, including patients’ self-efficacy.MethodDemographic and clinical data of 798 patients with mental disorders from three psychotherapeutic units in Germany were elicited using self-report questionnaires. Control preference was measured using the Control Preferences Scale, and patients’ perceived self-efficacy was assessed using the Self-Efficacy Scale. Bivariate and multivariate regression analyses were conducted to investigate the associations between patient variables and control preference.ResultsMost patients preferred a collaborative role (57.5%), followed by a semi passive (21.2%), a partly autonomous (16.2%), an autonomous (2.8%) and a fully passive (2.3%) role when making medical decisions. Age, sex, diagnosis, employment status, medical pretreatment and perceived self-efficacy were associated with the preference for involvement in the multivariate logistic model.ConclusionOur results confirm the preferences for involvement in medical decisions of mentally ill patients. We reconfirmed previous findings that older patients prefer a shared role over an autonomous role and that subjects with a high qualification prefer a more autonomous role over a shared role. The knowledge about predictors may help strengthen treatment effectiveness because matching the preferred and actual role preferences has been shown to improve clinical outcome.

Improving Communication With Surrogate Decision-Makers: A Pilot Initiative.

Difficult conversations in medical care often occur between physicians and patients' surrogates, individuals entrusted with medical decisions for patients who lack the capacity to make them. Poor communication between patients' surrogates and physicians may exacerbate anxiety and guilt for surrogates, and may contribute to physician stress and burnout. This pilot study assesses the effectiveness of an experiential learning workshop that was conducted in a clinical setting, and aimed at improving resident physician communication skills with a focus on surrogate decision-making. From April through June 2016, we assessed internal medicine residents' baseline communication skills through an objective structured clinical examination (OSCE) with actors representing standardized surrogates. After an intensive, 6-hour communication skills workshop, residents were reassessed via an OSCE on the same day. A faculty facilitator and the surrogate evaluated participants' communication skills via the expanded Gap Kalamazoo Consensus Statement Assessment Form. Wilcoxon signed rank tests (α of .05) compared mean pre- and postworkshop scores. Of 44 residents, 33 (75%) participated. Participants' average preworkshop OSCE scores (M = 3.3, SD = 0.9) were significantly lower than postworkshop scores (M = 4.3; SD = 0.8; Z = 4.193; P < .001; effect size r = 0.52). After the workshop, the majority of participants self-reported feeling "more confident." Residents' communication skills specific to surrogate decision-making benefit from focused interventions. Our pilot assessment of a workshop showed promise, and additionally demonstrated the feasibility of bringing OSCEs and simulated encounters into a busy clinical practice.

Training doctors briefly and in situ to involve their patients in making medical decisions-Preliminary testing of a newly developed module.

ObjectiveTo carry out preliminary evaluation of a training module for doctors to enhance their ability to involve their patients in medical decision making. The training refers to the shared decision‐making (SDM) communication concept.MethodsThe training module includes a comprehensive manual, a corresponding video tutorial with communication examples and a 15‐minute face‐to‐face feedback session based on an SDM analysis of a consultation recording provided by the trainee. Ten trainees (four neurologists, three dentists, and three general practitioners) participating in the pretest each recorded four clinical consultations (total sample: N=40) and received three training components. After the training, doctors provided feedback on the module's feasibility in a questionnaire. Communication performance of doctors, patients and doctor–patient dyads was assessed by trained observers and self‐assessed by doctors and patients using the MAPPIN’SDM approach. Training effects were determined using Wilcoxon signed‐rank tests comparing baseline values with post‐intervention performance as assessed in the fourth consultations.ResultsThe face‐to‐face training sessions were short and feasible with regard to clinical reality. Participants considered the training supportive for acquiring SDM skills and recommended more emphasis on the face‐to‐face feedback. Communication improved according to observers rating doctors (P=.05) and doctor–patient dyads (P=.07) and to doctors’ own judgements (P=.02). No improvement was observed in patients’ SDM behaviour (P=.11); accordingly, patients’ judgements did not indicate improvement (P=.14).ConclusionsThe training is designed to meet clinicians’ needs. Improvement of risk communication after training encourages optimization according to doctors’ feedback. Following this study, the efficacy of the training is now being examined in a randomized controlled trial.

Aiding risk information learning through simulated experience (ARISE): Using simulated outcomes to improve understanding of conditional probabilities in prenatal Down syndrome screening

ObjectiveTo determine whether the use of visually-presented simulated experiences to communicate statistical information can improve an individual’s understanding of conditional probabilities—specifically the positive predictive value (PPV) of prenatal screening tests for Down syndrome. MethodsIn Experiment 1 (N=64) and Experiment 2 (N=180) participants were asked to estimate the PPV of a prenatal screening test for Down syndrome based on either (1) explicit statistics regarding the prevalence of Down syndrome and the sensitivity and specificity of a prenatal screening test for Down syndrome, or (2) experiencing up to 5000 simulated test results over a short time. ResultsParticipants’ estimates of the PPV were more accurate when they had learned via simulated experiences (79% accuracy) compared with estimates based on explicitly described statistics (14%). Participants in the simulated experience condition also reported decreased interest in screening and decreased concern with a positive test result. ConclusionA visual paradigm presenting simulated experiences improves PPV estimates, compared to estimates derived from explicitly provided statistics, while also shifting attitudes away from screening. Practice implicationsThe use of simulated experiences may prove to be simple but powerful tool to communicate complex statistical information to patients in medical decision making situations.

Time-to-event versus ten-year-absolute-risk in cardiovascular risk prevention - does it make a difference? Results from the Optimizing-Risk-Communication (OptRisk) randomized-controlled trial.

BackgroundThe concept of shared-decision-making is a well-established approach to increase the participation of patients in medical decisions. Using lifetime risk or time-to-event (TTE) formats has been increasingly suggested as they might have advantages, e.g. in younger patients, to better show consequences of unhealthy behaviour. In this study, the most-popular ten-year risk illustration in the decision-aid-software arribaTM (emoticons), is compared within a randomised trial to a new-developed TTE illustration, which is based on a Markov model.MethodsThirty-two General Practitioners (GPs) took part in the study. A total of 304 patients were recruited and counseled by their GPs with arribaTM, and randomized to either the emoticons or the TTE illustration, followed by a patient questionnaire to figure out the degree of shared-decision-making (PEF-FB9, German questionnaire to measure the participation in the shared decision-making process, primary outcome), as well as the decisional conflict, perceived risk, accessibility and the degree of information, which are all secondary outcomes.ResultsRegarding our primary outcome PEF-FB9 the new TTE illustration is not inferior compared to the well-established emoticons taking the whole study population into account. Furthermore, the non-inferiority of the innovative TTE could be confirmed for all secondary outcome variables. The explorative analysis indicates even advantages in younger patients (below 46 years of age).ConclusionThe TTE format seems to be as useful as the well-established emoticons. For certain patient populations, especially younger patients, the TTE may be even superior to demonstrate a cardiovascular risk at early stages. Our results suggest that time-to-event illustrations should be considered for current decision support tools covering cardiovascular prevention.Trial registrationThe study was registered at the German Clinical Trials Register and at the WHO International Clinical Trials Register Platform (ICTRP, ID DRKS00004933); registered 2 February 2016 (retrospectively registered).Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0393-1) contains supplementary material, which is available to authorized users.

Refining a Web-based goal assessment interview: item reduction based on reliability and predictive validity.

Goals are an important basis for patients' cognitive appraisal processes underlying quality-of-life (QOL) assessment because they are the foundation to one's frame of reference. We sought to identify the best of six goal delineation items and relevant themes for two new versions of the QOL Appraisal Profile: an interview tool using a subset of the best open-ended goal delineation items, and a shorter close-ended version for use in survey research. This is a secondary analysis of longitudinal data (n=1126) of participants in the North American Research Committee on Multiple Sclerosis (MS) registry. The open-ended data were coded by at least two trained coders with moderately high inter-rater agreement. There were 31 themes reflecting goal content such as health, interpersonal, independence, mental health, and financial themes. Descriptive statistics identified most prevalent themes. Reliability analysis (alpha, item-total correlations) and hierarchical linear modeling identified the best goal items. Based on these qualitative and quantitative analyses, Solve (item 2) is the best single item because it is clear anchor for about a third of the goal themes, and explains the most variance in outcomes and demographic characteristics, suggesting that it taps into and reveals diversity in the sample. The next best items are Accomplish and Maintain (items 1 and 4), which are useful in tapping into and revealing diversity among people reporting cognitive deficits (Accomplish), and demographic factors (both Accomplish and Maintain items). The goal delineation items identified as best performers in this study will be used to develop a shorter open-ended version of the QOL Appraisal Profile, and an entirely close-ended version of the QOL Appraisal Profile for use in more standard survey research settings. These tools will enable coaching patients in medical decision making as well as investigations of appraisal and response shift in QOL research.

Patient Preferences and Shared Decision Making in the Treatment of Substance Use Disorders: A Systematic Review of the Literature.

BackgroundShared Decision Making (SDM) as means to the involvement of patients in medical decision making is increasingly demanded by treatment guidelines and legislation. Also, matching of patients’ preferences to treatments has been shown to be effective regarding symptom reduction. Despite promising results for patients with substance use disorders (SUD) no systematic evaluation of the literature has been provided. The aim is therefore to give a systematic overview of the literature of patient preferences and SDM in the treatment of patients with SUD.MethodsAn electronic literature search of the databases Medline, Embase, Psyndex and Clinical Trials Register was performed. Variations of the search terms substance use disorders, patient preferences and SDM were used. For data synthesis the populations, interventions and outcomes were summarized and described according to the PRISMA statement. Methodological quality of the included articles was assessed with the Mixed Methods Appraisal Tool.ResultsN = 25 trials were included in this review. These were conducted between 1986 and 2014 with altogether n = 8.729 patients. Two studies found that patients with SUD preferred to be actively involved in treatment decisions. Treatment preferences were assessed in n = 18 studies, where the majority of patients preferred outpatient compared with inpatient treatment. Matching patients to preferences resulted in a reduction on substance use (n = 3 studies), but the majority of studies found no significant effect. Interventions for SDM differed across patient populations and optional therapeutic techniques.DiscussionPatients with substance use disorders should be involved in medical treatment decisions, as patients with other health conditions. A suitable approach is Shared Decision Making, emphasizing the patients’ preferences. However, due to the heterogeneity of the included studies, results should be interpreted with caution. Further research is needed regarding SDM interventions in patient populations with substance use disorders.