Search

BackgroundGPs are well placed to enhance shared decision making (SDM) about treatment for patients with advanced cancer. However, to date, little is known about GPs’ views about their contribution to SDM.AimTo explore GPs’ perspectives on their role in SDM about palliative cancer treatment and the requirements they report to fulfil this role.Design and settingQualitative interview study among Dutch GPs.MethodGPs were sampled purposefully and conveniently. In-depth, semi-structured interviews were conducted, recorded, and transcribed verbatim. Transcripts were analysed by thematic analysis.ResultsFifteen GPs took part in this study. Most of them reported practices that potentially support SDM: checking the quality of a decision, complementing SDM, and enabling SDM. Even though most of the GPs believed that decision making about systemic cancer treatment is primarily the oncologist’s responsibility, they did recognise their added value in the SDM process because of their gatekeeper position, the additional opportunity they offer patients to discuss treatment decisions, and their knowledge and experience as primary healthcare providers at the end of life. Requirements for them to support the SDM process were described as: good collaboration with oncologists; sufficient information about the disease and its treatment; time to engage in conversations about treatment; a trusting relationship with patients; and patient-centred communication.ConclusionGPs may support SDM by checking the quality of a decision and by complementing and enabling the SDM process to reach high-quality decisions. This conceptualisation of the GP’s supporting role in SDM may help us to understand how SDM is carried out through interprofessional collaboration and provide tools for how to adopt a role in the interprofessional SDM process.

Sickle cell disease (SCD) resulting from a mutation of the β-globin gene results in sickle deformation of the red blood cell with consequent vaso-occlusion and intravascular hemolysis. SCD results in substantial morbidity, with impaired quality of life and premature mortality. Comprehensive and supportive care, disease modifying therapies and treatments with curative intent are each associated with asymmetrical costs, burden of care, and impact on survival and quality of life. There is thus a considerable decisional dilemma regarding treatment among patients and caregivers. The objective of this review is to evaluate the literature regarding quantitative and qualitative studies of patient preferences in therapy for SCD. Numerous survey-based studies have been performed evaluating SCD patients’ treatment preferences. These studies are limited, however, as they are purely descriptive in nature with limited quantitative information on the relative value of treatment alternatives. Time trade-off and standard gamble studies and health state utility studies have also been utilized to quantify patient utility especially for curative hematopoietic cell transplant. However, these studies suffer from inaccurate assumptions regarding patient preferences. Qualitative studies have garnered the patient and caregiver perspective. Qualitative studies may be limited by selective and purposive sampling, and lack of representativeness due to sample size.

The uptake of contralateral prophylactic mastectomy (CPM) has increased steadily over the last twenty years in women of all age groups and breast cancer stages. Since contralateral breast cancer is relatively rare and the breast cancer guidelines only recommend CPM in a small subset of patients with breast cancer, the drivers of this trend are unknown. This review aims to evaluate the evidence for and acceptability of CPM, data on patient rationales for choosing CPM, and some of the factors that might impact patient preferences. Based on the evidence, future recommendations will be provided. First, data on contralateral breast cancer risk and CPM rates and trends are addressed. After that, the evidence is structured around four main patient rationales for CPM formulated as questions that patients might ask their surgeon: Will CPM reduce mortality risk? Will CPM reduce the risk of contralateral breast cancer? Can I avoid future screening with CPM? Will I have better breast symmetry after CPM? Also, three different guidelines regarding CPM will be reviewed. Studies indicate a large gap between patient preferences for radical risk reduction with CPM and the current approaches recommended by important guidelines. We suggest a strategy including shared decision-making to enhance surgeons’ communication with patients about contralateral breast cancer and treatment options, to empower patients in order to optimize the use of CPM incorporating accurate risk assessment and individual patient preferences., Highlights • Contralateral prophylactic mastectomy rates have increased over the last 20 years. • Patients may want CPM to reduce risk of contralateral breast cancer and mortality. • Patients do not always have the tools available to make a well-informed decision. • Patient and surgeon’s shared decision-making could optimize the use of CPM.

Supplemental digital content is available in the text., Background Research indicates that having multiple healthcare professions and disciplines simultaneously at the patient’s bedside improves interprofessional communication and collaboration, coordination of care, and patient-centered shared decision-making. So far, no review has been conducted, which included qualitative studies, explores the feasibility of the method, and looks at differences in definitions. Objectives The aim of the study was to explore available evidence on the effects of interdisciplinary bedside rounds (IBRs) on patient centeredness, quality of care and team collaboration; the feasibility of IBRs; and the differences in definitions. Data Sources PubMed, Web of Science, and Cochrane databases were systematically searched. The reference lists of included articles and gray literature were also screened. Articles in English, Dutch, and French were included. There were no exclusion criteria for publication age or study design. Study Appraisal and Synthesis Methods The included (N = 33) articles were critically reviewed and assessed with the Downs and Black checklist. The selection and summarizing of the articles were performed in a 3-step procedure, in which each step was performed by 2 researchers separately with researcher triangulation afterward. Conclusions and Implications of Key Findings Interdisciplinary bedside round has potentially a positive influence on patient centeredness, quality of care, and team collaboration, but because of a substantial variability in definitions, design, outcomes, reporting, and a low quality of evidence, definitive results stay uncertain. Perceived barriers to use IBR are time constraints, lack of shared goals, varied responsibilities of different providers, hierarchy, and coordination challenges. Future research should primarily focus on conceptualizing IBRs, in specific the involvement of patients, before more empiric, multicentered, and longitudinal research is conducted.

Background and objectives Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. Design, setting, participants, & measurements We purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. Results Across 16 focus groups, 134 participants (range, 19–85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. Conclusions Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.

Dentistry is responsible for around 10% of antibiotic prescribing across global healthcare, with up to 80% representing inappropriate use. Facilitating shared decision-making has been shown to optimise antibiotic prescribing (antibiotic stewardship) in primary medical care. Our aim was to co-develop a shared decision-making antibiotic stewardship tool for dentistry. Dentists, patients and other stakeholders prioritised factors to include in the new tool, based on previous research (a systematic review and ethnographic study) about dentists’ decision-making during urgent appointments. Candidate behaviour-change techniques were identified using the Behaviour Change Wheel and selected based on suitability for a shared decision-making approach. A ‘think aloud’ study helped fine-tune the tool design and Crystal Marking ensured clarity of messaging. The resulting paper-based worksheet for use at point-of-care incorporated various behaviour change techniques, such as: ’information about (and salience of) health consequences’, ‘prompts and cues’, ‘restructuring the physical (and social) environment’ and ‘credible sources’. The think aloud study confirmed the tool’s acceptability to dentists and patients, and resulted in the title: ‘Step-by-step guide to fixing your toothache.’ Further testing will be necessary to evaluate its efficacy at safely reducing dental antibiotic prescribing during urgent dental appointments in England and, with translation, to other dental contexts globally.

Objective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, patients). The study's aim was to develop a conceptual framework of patient-directed knowledge tool types.Methods: A face-to-face evidence-informed consensus meeting with 15 international experts. After the meeting, the framework went through two rounds of feedback before informal consensus was reached.Results: A conceptual framework containing five patient-directed knowledge tool types was developed. The first part of the framework describes the tools' purposes and the second focuses on the tools' core elements.Conclusion: The framework provides clarity on which types of patient-directed tools exist, the purposes they serve, and which core elements they prototypically include. It is a working framework and will require further refinement as the area develops, alongside validation with a broader group of stakeholders.Practice implications: The framework assists developers and users to know which type a tool belongs, its purpose and core elements, helping them to develop and use the right tool for the right job. (C) 2019 Elsevier B.V. All rights reserved.

ImportanceIntensive lifestyle change (e.g., the Diabetes Prevention Program) and metformin reduce type 2 diabetes risk among patients with prediabetes. However, real-world uptake remains low. Shared decision-making (SDM) may increase awareness and help patients select and follow through with informed options for diabetes prevention that are aligned with their preferences.ObjectiveTo test the effectiveness of a prediabetes SDM intervention.DesignCluster randomized controlled trial.SettingTwenty primary care clinics within a large regional health system.ParticipantsOverweight/obese adults with prediabetes (BMI ≥ 24kg/m2 and HbA1c 5.7-6.4%) were enrolled from 10 SDM intervention clinics. Propensity score matching was used to identify control patients from 10 usual care clinics.InterventionIntervention clinic patients were invited to participate in a face-to-face SDM visit with a pharmacist who used a decision aid (DA) to describe prediabetes and four possible options for diabetes prevention: DPP, DPP ± metformin, metformin only, or usual care.Main outcomes and measuresPrimary endpoint was uptake of DPP (≥ 9 sessions), metformin, or both strategies at 4months. Secondary endpoint was weight change (lbs.) at 12months.ResultsUptake of DPP and/or metformin was higher among SDM participants (n= 351) than controls receiving usual care (n= 1028; 38% vs. 2%, p&nbsp

Background The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. Methods The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline–based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. Results Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years. Conclusions The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions.

Introduction While the Diabetes Prevention Program Study demonstrated that intensive lifestyle change and metformin both reduce type 2 diabetes incidence, there are little data on patient preferences in real-world, clinical settings. Methods The Prediabetes Informed Decisions and Education (PRIDE) study was a cluster-randomized trial of shared decision making (SDM) for diabetes prevention. In PRIDE, pharmacists engaged patients with prediabetes in SDM using a decision aid with information about both evidence-based options. We recorded which diabetes prevention option(s) participants chose after the SDM visit. We also evaluated logistic regression models examining predictors of choosing intensive lifestyle change ± metformin, compared to metformin or usual care, and predictors of choosing metformin ± intensive lifestyle change, compared to intensive lifestyle change or usual care. Results Among PRIDE participants ( n = 515), 55% chose intensive lifestyle change, 8.5% chose metformin, 15% chose both options, and 21.6% declined both options. Women (odds ratio [OR] = 1.60, P = 0.023) had higher odds than men of choosing intensive lifestyle change. Patients >60 years old (OR = 0.50, P = 0.028) had lower odds than patients Conclusions Patients with prediabetes are making choices for diabetes prevention that generally align with recommendations and expected benefits from the published literature. Our results are important for policy makers and clinicians, as well as program planners developing systemwide approaches for diabetes prevention.

The mainstay of hemophilia treatment is to prevent bleeding through regular long-term prophylaxis and to control acute breakthrough bleeds. Various treatment options are currently available for prophylaxis, and treatment decision-making is a challenging and multifaceted process of identifying the most appropriate option for each patient. A multidisciplinary expert panel convened to develop a practical, patient-oriented algorithm to facilitate shared treatment decision-making between clinicians and patients. Key variables were identified, and an algorithm proposed based on five variables: bleeding phenotype, musculoskeletal status, treatment adherence, venous access, and lifestyle. A complementary, patient-focused preference tool was also hypothesized, with the aim of exploring individual patients' priorities, preferences, and goals. It is hoped that the proposed algorithm and the hypothesized patient preference tool will assist in selecting a treatment for each patient that is as efficient as possible in preventing bleeds while also accounting for the patient's expectations and priorities, Funded by a grant from Novo Nordisk

Objectives Methods Results Conclusions Level of evidence To determine preference patterns for topical anesthesia in patients undergoing endoscopy pre‐coronavirus (2019 coronavirus disease [COVID‐19]) pandemic and analyze outcomes based on preference, using a decision aid format.A decision aid was developed with expert and patient input. New patients presenting to subspecialty clinics over a 2‐month pre‐COVID‐19 period completed a pre‐procedure survey about their priorities, then were asked to choose between topical oxymetazoline/lidocaine spray or none. A post‐procedure outcome survey followed.Of 151 patients, 90.1% patients elected to have topical anesthesia. Top patient priorities were “I want the scope to be easy for the doctor” and “I want to be as comfortable as possible.” Patients who strongly wanted to avoid medication (P = .002) and bad taste (P = .003) were more likely to select no spray, whereas those who wanted to avoid pain received anesthetic (P = .011). According to the post‐procedure assessment, 95.4% of patients were satisfied or strongly satisfied their choice, and this did not correlate with anesthetic vs none.Patient preferences are easily elicited and correlate with treatment choices. Most patients chose to have topical anesthetic and were willing to tolerate side effects;however, both patients with and without topical anesthetic were satisfied with their choices. This decision aid can be used to optimize shared decision making in the otolaryngology clinic. Given the aerosolizing potential of both spray and no spray conditions, this insight may be consequential when devising office protocols for post‐COVID‐19 practice.II. [ABSTRACT FROM AUTHOR] Copyright of Laryngoscope Investigative Otolaryngology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background In modern neurosurgery, there are often several treatment alternatives, with different risks and benefits. Shared decision-making (SDM) has gained interest during the last decade, although SDM in the neurosurgical field is not widely studied. Therefore, the aim of this scoping review was to present the current landscape of SDM in neurosurgery. Methods A literature review was carried out in PubMed and Scopus. We used a search strategy based on keywords used in existing literature on SDM in neurosurgery. Full-text, peer-reviewed articles published from 2000 up to the search date February 16, 2021, with patients 18 years and older were included if articles evaluated SDM in neurosurgery from the patient’s perspective. Results We identified 22 articles whereof 7 covered vestibular schwannomas, 7 covered spinal surgery, and 4 covered gliomas. The other topics were brain metastases, benign brain lesions, Parkinson’s disease and evaluation of neurosurgical care. Different methods were used, with majority using forms, questionnaires, or interviews. Effects of SDM interventions were studied in 6 articles; the remaining articles explored factors influencing patients’ decisions or discussed SDM aids. Conclusion SDM is a tool to involve patients in the decision-making process and considers patients’ preferences and what the patients find important. This scoping review illustrates the relative lack of SDM in the neurosurgical literature. Even though results indicate potential benefit of SDM, the extent of influence on treatment, outcome, and patient’s satisfaction is still unknown. Finally, the use of decision aids may be a meaningful contribution to the SDM process.

Objective The overuse of antibiotics for acute otitis media (AOM) in children is a healthcare quality issue in part arising from conflicting parent and physician understanding of the risks and benefits of antibiotics for AOM. Our objective was to develop a conversation aid that supports shared decision making (SDM) with parents of children who are diagnosed with non-severe AOM in the acute care setting. Materials and Methods We developed a web-based encounter tool following a human-centered design approach that includes active collaboration with parents, clinicians, and designers using literature review, observations of clinical encounters, parental and clinician surveys, and interviews. Insights from these processes informed the iterative creation of prototypes that were reviewed and field-tested in patient encounters. Results The ear pain conversation aid includes five sections: (1) A home page that opens the discussion on the etiologies of AOM; (2) the various options available for AOM management; (3) a pictograph of the impact of antibiotic therapy on pain control; (4) a pictograph of complication rates with and without antibiotics; and (5) a summary page on management choices. This open-access, web-based tool is located at www.earpaindecisionaid.org. Conclusions We collaboratively developed an evidence-based conversation aid to facilitate SDM for AOM. This decision aid has the potential to improve parental medical knowledge of AOM, physician/parent communication, and possibly decrease the overuse of antibiotics for this condition.

Operative treatment is indicated for most toothache/dental abscesses, yet antibiotics instead of procedures are often prescribed. This ethnographic study aimed to identify clinician and patient factors influencing urgent dental care for adults during actual appointments, and to identify elements sensitive to context. Appointments were observed in out-of-hours and general dental practices. Follow-up interviews took place with dentists, dental nurses, and patients. Dentist and patient factors were identified through thematic analysis of observation records and appointment/interview transcripts. Dentist factors were based on a published list of factors influencing antibiotic prescribing for adults with acute conditions across primary health care and presented within the Capability-Opportunity-Motivation-Behaviour model. Contextually sensitive elements were revealed by comparing the factors between settings. In total, thirty-one dentist factors and nineteen patient factors were identified. Beliefs about antibiotics, goals for the appointment and access to dental services were important for both dentists and patients. Dentist factors included beliefs about the lifetime impact of urgent dental procedures on patients. Patient factors included their communication and negotiation skills. Contextual elements included dentists&rsquo, concerns about inflicting pain on regular patients in general dental practice, and patients&rsquo, difficulties accessing care to complete temporary treatment provided out of hours. This improved understanding of factors influencing shared decisions about treatments presents significant opportunity for new, evidence-based, contextually sensitive antibiotic stewardship interventions.

Introduction Physicians need to be able to communicate the myriad of management options clearly to patients and engage them in their health care decisions, even in the fast-paced environment of the emergency department. Shared decision making (SDM) is an effective communication strategy for physicians to share diagnostic uncertainty, avoid potentially harmful tests, and solicit patients' preferences for their care. Role-playing with just-in-time feedback is an effective method to learn and practice SDM before having these conversations with patients. Methods This flipped classroom workshop featured precourse materials and an in-class session incorporating a short lecture outlining a framework for SDM, followed by role-playing through patient scenarios. Learners took turns playing the physician or patient role and received feedback on their communication skills while in the physician role. A faculty examiner subsequently assessed skill attainment using a simulated patient encounter and checklist of critical actions. Results The workshop was an interactive and effective way to teach SDM to 28 PGY 1 and PGY 2 emergency medicine residents. Two months after attending the workshop, over 75% of the first-year residents were able to complete all the elements of the SDM process in a simulated patient encounter; four residents required no prompting by the examiner. Discussion A communications workshop that incorporates role-playing with different patient encounters is an interactive way to teach SDM for the emergency setting. Residents early in their clinical training can benefit from learning and practicing SDM in a simulated setting.

OBJECTIVE: To develop a model and methodology for predicting the risk of Gleason upgrading in patients with prostate cancer on active surveillance (AS) and using the predicted risks to create risk-based personalised biopsy schedules as an alternative to one-size-fits-all schedules (e.g. annually). Furthermore, to assist patients and doctors in making shared decisions on biopsy schedules, by providing them quantitative estimates of the burden and benefit of opting for personalised vs any other schedule in AS. Lastly, to externally validate our model and implement it along with personalised schedules in a ready to use web-application.PATIENTS AND METHODS: Repeat prostate-specific antigen (PSA) measurements, timing and results of previous biopsies, and age at baseline from the world's largest AS study, Prostate Cancer Research International Active Surveillance (PRIAS; 7813 patients, 1134 experienced upgrading). We fitted a Bayesian joint model for time-to-event and longitudinal data to this dataset. We then validated our model externally in the largest six AS cohorts of the Movember Foundation's third Global Action Plan (GAP3) database (>20 000 patients, 27 centres worldwide). Using the model predicted upgrading risks; we scheduled biopsies whenever a patient's upgrading risk was above a certain threshold. To assist patients/doctors in the choice of this threshold, and to compare the resulting personalised schedule with currently practiced schedules, along with the timing and the total number of biopsies (burden) planned, for each schedule we provided them with the time delay expected in detecting upgrading (shorter is better).RESULTS: The cause-specific cumulative upgrading risk at the 5-year follow-up was 35% in PRIAS, and at most 50% in the GAP3 cohorts. In the PRIAS-based model, PSA velocity was a stronger predictor of upgrading (hazard ratio [HR] 2.47, 95% confidence interval [CI] 1.93-2.99) than the PSA level (HR 0.99, 95% CI 0.89-1.11). Our model had a moderate area under the receiver operating characteristic curve (0.6-0.7) in the validation cohorts. The prediction error was moderate (0.1-0.2) in theGAP3 cohorts where the impact of the PSA level and velocity on upgrading risk was similar to PRIAS, but large (0.2-0.3) otherwise. Our model required re-calibration of baseline upgrading risk in the validation cohorts. We implemented the validated models and the methodology for personalised schedules in a web-application (http://tiny.cc/biopsy).CONCLUSIONS: We successfully developed and validated a model for predicting upgrading risk, and providing risk-based personalised biopsy decisions in AS of prostate cancer. Personalised prostate biopsies are a novel alternative to fixed one-size-fits-all schedules, which may help to reduce unnecessary prostate biopsies, while maintaining cancer control. The model and schedules made available via a web-application enable shared decision-making on biopsy schedules by comparing fixed and personalised schedules on total biopsies and expected time delay in detecting upgrading.

Introduction:Shared decision-making (SDM) is a critical component of delivering patient-centered care. Members of vulnerable populations may play a passive role in clinical decision-making; therefore, understanding their prior decision-making experiences is a key step to engaging them in SDM.Objective:To understand the previous healthcare experiences and current expectations of vulnerable populations on clinical decision-making regarding therapeutic options.Methods:Clients of a local food bank were recruited to participate in focus groups. Participants were asked to share prior health decision experiences, explain difficulties they faced when making a therapeutic decision, describe features of previous satisfactory decision-making processes, share factors under consideration when choosing between treatment options, and suggest tools that would help them to communicate with healthcare providers. We used the inductive content analysis to interpret data gathered from the focus groups.Results:Twenty-six food bank clients participated in four focus groups. All participants lived in areas of socioeconomic disadvantage. Four themes emerged: prior negative clinical decision-making experience with providers, patients preparing to engage in SDM, challenges encountered during the decision-making process, and patients’ expectations of decision aids. Participants also reported they were unable to discuss therapeutic options at the time of decision-making. They also expressed financial concerns and the need for sufficiently detailed information to evaluate risks.Conclusion:Our findings suggest the necessity of developing decision aids that would improve the engagement of vulnerable populations in the SDM process, including consideration of affordability, use of patient-friendly language, and incorporation of drug–drug and drug–food interactions information.

BackgroundOlder patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of standard clinical care, resulting in a missed opportunity to enhance (clinical) outcomes including quality of life in these patients. To develop routine geriatric assessment programs for patients approaching ESKD, it is crucial to understand patients’ and professionals’ experiences with and perspectives about the benefits, facilitators and barriers for geriatric assessment.MethodsIn this qualitative study, semi-structured focus group discussions were conducted with ESKD patients, caregivers and professionals. Participants were purposively sampled from three Dutch hospital-based study- and routine care initiatives involving geriatric assessment for (pre-)ESKD care. Transcripts were analysed inductively using thematic analysis.ResultsIn six focus-groups, participants (n = 47) demonstrated four major themes:(1) Perceived characteristics of the older (pre)ESKD patient group. Patients and professionals recognized increased vulnerability and (cognitive) comorbidity, which is often unrelated to calendar age. Both believed that often patients are in need of additional support in various geriatric domains.(2) Experiences with geriatric assessment.Patients regarded the content and the time spent on the geriatric assessment predominantly positive. Professionals emphasized that assessment creates awareness among the whole treatment team for cognitive and social problems, shifting the focus from mainly somatic to multidimensional problems. Outcomes of geriatric assessment were observed to enhance a dialogue on suitability of treatment options, (re)adjust treatment and provide/seek additional (social) support.(3) Barriers and facilitators for implementation of geriatric assessment in routine care.Discussed barriers included lack of communication about goals and interpretation of geriatric assessment, burden for patients, illiteracy, and organizational aspects. Major facilitators are good multidisciplinary cooperation, involvement of geriatrics and multidisciplinary team meetings.(4) Desired characteristics of a suitable geriatric assessmentconcerned the scope and use of tests and timing of assessment.ConclusionsPatients and professionals were positive about using geriatric assessment in routine nephrology care. Implementation seems achievable, once barriers are overcome and facilitators are endorsed. Geriatric assessment in routine care appears promising to improve (clinical) outcomes in patients approaching ESKD.

The use of algorithmic prediction in insurance is regarded as the beginning of a new era, because it promises to personalise insurance policies and premiums on the basis of individual behaviour and level of risk. The core idea is that the price of the policy would no longer refer to the calculated uncertainty of a pool of policyholders, with the consequence that everyone would have to pay only for her real exposure to risk. For insurance, however, uncertainty is not only a problem – shared uncertainty is a resource. The availability of individual risk information could undermine the principle of risk-pooling and risk-spreading on which insurance is based. The article examines this disruptive change first by exploring the possible consequences of the use of predictive algorithms to set insurance premiums. Will it endanger the principle of mutualisation of risks, producing new forms of discrimination and exclusion from coverage? In a second step, we analyse how the relationship between the insurer and the policyholder changes when the customer knows that the company has voluminous, and continuously updated, data about her real behaviour.

The intensive care unit (ICU) represents one of the most ethically burdensome health care settings where uncertainties and disagreements concerning proportionate treatments, goals of care and patients' best interests frequently come up. Clinical ethics consultation (CEC) is a service available to hospital staff, patients and their family members to handle and resolve such moral doubts and conflicts. Considered as the most challenging activity of clinical ethics, it aims to improve the quality of patient care and to increase both health care professionals' familiarity with ethical issues and their competence in identifying and analyzing moral problems. Data concerning CEC in ICUs reveal how it reduces provision of disproportionate treatments, hospital costs and conflicts in addition to producing user satisfaction. First, we show what use CEC can have in an ICU, especially in the process of shared decision making. Then, we analyze two attitudes which may prevent CEC from being fully integrated in the health care system. Lastly, we illustrate the advantages of implementing a clinical ethics service where the full spectrum of ethics support activities are ensured on an ongoing basis.

The surgical guidelines for male breast cancer (MBC) have been largely guided by female-predominant clinical trials. Because no clinical trial has been conducted to examine the surgical treatment of MBC, we performed a systematic review comparing the survival of patients with MBC who had undergone breast conserving surgery (BCS) and those who had undergone mastectomy and evaluated the patients’ radiotherapy compliance after BCS. We performed a systematic search of electronic databases to find MBC cohort studies that had reported ≥ 1 survival outcome (disease-free survival [DFS], disease-specific survival [DSS], or overall survival [OS]) stratified by surgical treatment (BCS and/or mastectomy) and/or radiotherapy compliance with BCS. A total of 1 prospective and 9 retrospective cohort studies were included, with the number of patients ranging from 7 to 6039. Of the BCS patients, compliance with postoperative radiotherapy was low (range, 27%-46%), with the exception of 1 single-institution prospective study that reported 86% compliance (6 of 7 patients). The pooled estimate for all patients with MBC was 83% (95% confidence interval [CI], 78%-88%) for 5-year DSS and 66% (95% CI, 63%-70%) for 5-year OS. Most studies reported no differences in DFS, DSS, or OS for BCS and mastectomy. BCS is a reasonable treatment approach for MBC because it was associated with oncologic outcomes similar to those with mastectomy. However, the low rates of radiotherapy compliance among male patients who underwent BCS is concerning and highlights the importance of shared decision-making with patients with MBC when selecting a surgical treatment strategy.

ObjectiveTo update the European League Against Rheumatism (EULAR) recommendations for the pharmacological treatment of psoriatic arthritis (PsA).MethodsAccording to the EULAR standardised operating procedures, a systematic literature review was followed by a consensus meeting to develop this update involving 28 international taskforce members in May 2019. Levels of evidence and strengths of recommendations were determined.ResultsThe updated recommendations comprise 6 overarching principles and 12 recommendations. The overarching principles address the nature of PsA and diversity of both musculoskeletal and non-musculoskeletal manifestations; the need for collaborative management and shared decision-making is highlighted. The recommendations provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs and local glucocorticoid injections are proposed as initial therapy; for patients with arthritis and poor prognostic factors, such as polyarthritis or monoarthritis/oligoarthritis accompanied by factors such as dactylitis or joint damage, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drugs (bDMARDs) targeting tumour necrosis factor (TNF), interleukin (IL)-17A or IL-12/23 should be initiated, taking into account skin involvement if relevant. If axial disease predominates, a TNF inhibitor or IL-17A inhibitor should be started as first-line disease-modifying antirheumatic drug. Use of Janus kinase inhibitors is addressed primarily after bDMARD failure. Phosphodiesterase-4 inhibition is proposed for patients in whom these other drugs are inappropriate, generally in the context of mild disease. Drug switches and tapering in sustained remission are addressed.ConclusionThese recommendations provide stakeholders with an updated consensus on the pharmacological management of PsA, based on a combination of evidence and expert opinion.

BackgroundShared decision-making (SDM) is widely recognized as a core strategy to improve patient-centered care. However, the implementation of SDM in routine care settings has been slow and its impact mixed.ObjectiveWe examine the temporal association of patient activation and patients' experience with the SDM process to assess the dominant directionality of this relationship.DesignPatient activation, or a patients' knowledge, skills, and confidence in self-management, was assessed using the 13-item Patient Activation Measure (PAM). Patient-reported assessment of the SDM process was assessed using the 3-item CollaboRATE measure. Patients at 16 adult primary care practices were surveyed in 2015 and 2016 on PAM (α = 0.92), CollaboRATE (α = 0.90), and demographics. The relationship between PAM and CollaboRATE was estimated using a cross-lagged panel model with clustered robust standard errors and practice fixed effects, controlling for patient characteristics.Participants1222 adult patients with diabetes and/or cardiovascular disease with survey responses at baseline (51% response rate) and a 1-year follow-up (73% response rate).ResultsPAM (mean 3.27 vs 3.28 on a range of 1 to 4; p = 0.082) and CollaboRATE (mean 3.62 vs 3.63 on a range of 1 to 5; p = 0.14) did not change significantly over time. In adjusted analyses, the path from baseline PAM to follow-up CollaboRATE (β = 0.35; p

International audience; Purpose: Treatment adherence is crucial in patients with rheumatoid arthritis (RA). The device used by the patients for self-injections may influence adherence to methotrexate (MTX) treatment. A MTX-autoinjector has been recently marketed in Europe. This crossover survey compared this MTX-autoinjector (MTX-autoinjector A) and an already existing MTX-autoinjector (MTX-autoinjector B) from the patients' perspective.Patients and methods: A total of 100 patients with moderate to severe RA using MTX-autoinjector A (N=35) or MTX-autoinjector B (N=65) were interviewed by an independent Global Market Research Company. Face-to-face interviews were performed using a computer-assisted personal interview system. Evaluation of the unfamiliar MTX-autoinjector was performed once the patients had received information, seen a demonstration, and performed a virtual testing.Results: A substantial advantage in favor of the MTX-autoinjector A was found with respect to all surveyed indicators. Respectively, 95% and 55% of the users of MTX-autoinjectors A and B claimed to be very or totally satisfied with their familiar MTX-autoinjector. With respect to several specific characteristics, 91% and 60% of the users of MTX-autoinjectors A and B were very or totally satisfied with their familiar MTX-autoinjector, 29% and 77% found the unfamiliar MTX-autoinjector better, and 26% and 73% were interested in trying the unfamiliar MTX-autoinjector. Injection mode (with no push button) and end-of-injection recognition system (with audible signal) were identified as key features explaining a stronger preference for MTX-autoinjector A.Conclusion: Even though deserving further studying, these findings are expected to guide clinicians when prescribing or renewing prescription of MTX-autoinjector, in particular in poor or non-compliant patients. In a context of growing interest in shared decision-making, the objective would be to choose with each patient the best suited MTX-autoinjector, and ultimately, to obtain a better treatment adherence.

OBJECTIVE: We sought to assess the frequency, content, and quality of shared decision making (SDM) in the emergency department (ED), from patients’ perspectives. METHODS: Utilizing a cross-sectional, multisite approach, we administered an instrument, consisting of two validated SDM assessment tools—the CollaboRATE and the SDM-Q-9—and one newly developed tool to a sample of ED patients. Our primary outcome was the occurrence of SDM in the clinical encounter, as defined by participants giving “top-box” scores on the CollaboRATE measure, and the ability of patients to identify the topic of their SDM conversation. Secondary outcomes included the content of the SDM conversations, as judged by patients, and whether patients were able to complete each of the two validated scales included in the instrument. RESULTS: After exclusions, 285 participants from two sites completed the composite instrument. Just under half identified as female (47%) or as white (47%). Roughly half gave top-box scores (i.e., indicating optimal SDM) on the CollaboRATE scale (49%). Less than half of the participants were able to indicate a decision they were involved in (44%), although those who did gave high scores for such conversations (73/100 via the SDM-Q-9 tool). The most frequently identified decisions discussed were admission versus discharge (19%), medication options (17%), and options for follow-up care (15%). CONCLUSIONS: Fewer than half of ED patients surveyed reported they were involved in SDM. The most common decision for which SDM was used was around ED disposition (admission vs. discharge). When SDM was employed, patients generally rated the discussion highly.

Decisions about how best to clinically care for young children born with Disorders of Sex Development (DSD) can be challenging because some decisions are irreversible, have lasting physical and mental health effects, and are frequently made before the affected person is able to participate in decision-making. This multi-stage study involved (1) the development of a web-based decision support tool (DST) for parents of infants or young children and the clinicians caring for them; (2) the assessment of communications and decision making between DSD specialists and parents both before and after introduction of the DST; and (3) interviews with a broad range of stakeholders regarding optimizing the DST and integrating it into usual care. Experience over the course of the 3 stages of this research suggests the need for further refinement of the DST to increase acceptability to all stakeholder groups, the necessity to address misperceptions by providers that they are already accomplishing all aspects of SDM in regular care without a DST and misunderstandings by parents that decisions are unnecessary because only a single option is apparent, and to better incorporate the tool into regular clinic workflow.

Measuring family caregivers' experiences of collaboration with nurses is important in the context of health care reforms that advocate an increased role of families in care. The Family Collaboration Scale (FCS) measures collaboration between nurses and family caregivers, however, the scale has a broad scope. Thus, the aim of this study was to construct a measure that is focused on collaboration only. After revision, a 25-item version of the FCS was sent to 777 family caregivers of hospitalized patients (≥70 years). Psychometric evaluation was employed by the Non-Parametric Item Response Theory to evaluate how items of the revised FCS behave. In total, 302 (39%) family caregivers were found eligible, mean (SD) age 65 (13) and 71% female. A 20-item FCS is proposed showing good psychometric properties. This study contributes to the limited knowledge of measuring collaboration between family caregivers and nurses.

Background: It is customarily perceived that in Africa, decisions around research participation may be based not only on individual reflection but also on discussions with others. Some authors have argued that such decision making is reflective of a more traditional communitarian African worldview; one critique of such a perspective is that it is lacking an empirical grounding. In this study, we explore decision making around enrollment in sickle cell genomics research in three countries in Africa, namely, Ghana, Cameroon, and Tanzania. Particularly, we focus on exploring the role of shared decision making with regard to participating in genomic studies. Results: We involved 64 participants in 15 individual interviews or in 49 focus-group discussions with research participants in rural and urban Tanzania (n = 20), Ghana (n = 30), and Cameroon (n = 14). We used a vignette to explore decision making around enrollment of children in sickle cell genomics research. Data were imported in NVivo11 and analyzed using thematic content analysis. Our findings indicate that the majority of the participants from both rural and urban settings prefer to make their own individual decisions and not consult with extended family or community leaders. Shared decision making was only considered necessary for individuals who were perceived to be in some way vulnerable. Conclusion: We found very limited support for shared decision making as the primary process for decision making about research participation. While consultation was considered important to support individual decision making, particularly when parents were perceived as vulnerable, there was no suggestion in our data that shared decision making would be a more important or valuable means of seeking consent for research participation in the African research context.

BACKGROUND: Shared decision-making (SDM) is optimal in the context of periviable delivery, where the decision to pursue life-support measures or palliation is both preference-sensitive and value-laden. We sought to develop a decision support tool (DST) prototype to facilitate SDM by utilizing a user-centered design research approach. METHODS: We convened four patient and provider advisory boards with women and their partners who had experienced a surviving or non-surviving periviable delivery, pregnant women who had not experienced a prior preterm birth, and obstetric providers. Each two-hour session involved design research activities to generate ideas and facilitate sharing of values, goals, and attitudes. Participant feedback shaped the design of three prototypes (a tablet application, family story videos, and a virtual reality experience) to be tested in a final session. RESULTS: Ninety-five individuals (48 mothers/partners; 47 providers) from two hospitals participated. Most participants agreed that the prototypes should include factual, unbiased outcomes and probabilities. Mothers and support partners also desired comprehensive explanations of delivery and care options, while providers wanted a tool to ease communication, help elicit values, and share patient experiences. Participants ultimately favored the tablet application and suggested that it include family testimonial videos. CONCLUSION: Our results suggest that a DST that combines unbiased information and understandable outcomes with family testimonials would be meaningful for periviable SDM. User-centered design was found to be a useful method for creating a DST prototype that may lead to improved effectiveness, usability, uptake, and dissemination in the future, by leveraging the expertise of a wide range of stakeholders.

Contains fulltext : 215755.pdf (Publisher’s version ) (Open Access) INTRODUCTION: Shared decision making is not always commonplace in advanced colorectal or lung cancer care. Decision aids (DAs) might be helpful. This review aimed (a) to provide an overview of DAs for patients with advanced colorectal or lung cancer and assess their availability; and (b) to assess their effectiveness if possible. METHODS: A systematic literature search (PubMed/EMBASE/PsycINFO/CINAHL) and Internet and expert searches were carried out to identify relevant DAs. Data from the DAs included were extracted and the quality of studies, evidence (Grading of Recommendations Assessment, Development and Evaluation) and effectiveness (International Patient Decision Aid Standards) of DAs were determined. RESULTS: Ten of the 12 DAs included (four colorectal cancer, four lung cancer and four generic) are still available. Most (9/12) were applicable throughout the disease pathway and usable for all decisions, or to the decision for supportive care with/without anti-cancer therapy. Seven studies tested effectiveness. Effects on patient outcomes varied, but were generally weakly positive (e.g., DAs improved patient satisfaction) with low evidence. Study quality was fair to good. CONCLUSION: There is a lack of readily available DAs that have been demonstrated to be effective in advanced colorectal or lung cancer. Rigorous testing of the effects of currently available and future DAs, to improve patient outcomes, is urgently needed.

ObjectiveMany treatment decisions are preference-sensitive and call for shared decision-making, notably when benefits are limited or uncertain, and harms impact quality of life. We explored if clinical practice guidelines (CPGs) acknowledge preference-sensitive decisions in how they motivate and phrase their recommendations.DesignWe performed a qualitative analysis of the content of CPGs and verified the results in semistructured interviews with CPG panel members.SettingDutch oncology CPGs issued in 2010 or later, concerning primary treatment with curative intent.Participants14 CPG panel members.Main outcomesFor treatment recommendations from six CPG modules, two researchers extracted the following: strength of recommendation in terms of the Grading of Recommendations Assessment, Development and Evaluation and its consistency with the CPG text; completeness of presentation of benefits and harms; incorporation of patient preferences; statements on the panel’s benefits–harm trade-off underlying recommendation; and advice on patient involvement in decision-making.ResultsWe identified 32 recommendations, 18 were acknowledged preference-sensitive decisions. Three of 14 strong recommendations should have been weak based on the module text. The reporting of benefits and harms, and their probabilities, was sufficiently complete and clear to inform the strength of the recommendation in one of the six modules only. Numerical probabilities were seldom presented. None of the modules presented information on patient preferences. CPG panel’s preferences were not made explicit, but appeared to have impacted 15 of 32 recommendations. Advice to involve patients and their preferences in decision-making was given for 20 recommendations (14 weak). Interviewees confirmed these findings. Explanations for lack of information were, for example, that clinicians know the information and that CPGs must be short. Explanations for trade-offs made were cultural-historical preferences, compliance with daily care, presumed role of CPGs and lack of time.ConclusionsThe motivation and phrasing of CPG recommendations do not stimulate choice awareness and a neutral presentation of options, thus hindering shared decision-making.

BACKGROUND: Some deaf men who use American Sign Language (ASL) experience barriers in patient-physician communication which may leave them at disparity for shared decision making compared to hearing men. Transparent communication accessibility is needed between deaf male ASL users and their physicians to maximize the benefit to risk ratio of using the prostate-specific antigen (PSA) as a screening tool for early detection. The objective is to compare shared decision-making outcomes between deaf and hearing males who are 1) age-eligible for PSA screening; and 2) younger than 45 years old with a family history of cancer. METHODS: An accessible health survey including questions about PSA test, PCC, modes of communication, and cancer history was administered in ASL to a nationwide sample of deaf adults from February 2017 to April 2018. Two subsamples were created: 1) 45 to 69 years old men who were age-eligible for PSA testing, and 2) 18 to 44 years old men with a family history of cancer. RESULTS: Age-eligible and younger deaf men with a family history of cancer are at disparity for shared decision making compared to their hearing peers. Regardless of age and PSA testing status, deaf men felt significantly less engaged in shared decision making with their health care providers compared to hearing men. CONCLUSION: Participation in shared decision making requires not only accessible communication but also cultural competency in working with deaf patients. This is critical in the shared decision-making era in maximizing the benefit of prostate cancer screening in deaf male patient population.

Background:Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.Methods:A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.Results:The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.Conclusion:The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities.

Objectives To determine the rate of surgical-site infections (SSI) in neurosurgical procedures involving a shared-resource intraoperative magnetic resonance imaging (ioMRI) scanner at a single institution derived from a prospective clinical quality management database. Methods All consecutive neurosurgical procedures that were performed with a high-field, 2-room ioMRI between April 2013 and June 2016 were included ( N = 195; 109 craniotomies and 86 endoscopic transsphenoidal procedures). The incidence of SSIs within 3 months after surgery was assessed for both operative groups (craniotomies vs. transsphenoidal approach). Results Of the 109 craniotomies, 6 patients developed an SSI (5.5%, 95% confidence interval [CI] 1.2–9.8%), including 1 superficial SSI, 2 cases of bone flap osteitis, 1 intracranial abscess, and 2 cases of meningitis/ventriculitis. Wound revision surgery due to infection was necessary in 4 patients (4%). Of the 86 transsphenoidal skull base surgeries, 6 patients (7.0%, 95% CI 1.5–12.4%) developed an infection, including 2 non-central nervous system intranasal SSIs (3%) and 4 cases of meningitis (5%). Logistic regression analysis revealed that the likelihood of infection significantly decreased with the number of operations in the new operational setting (odds ratio 0.982, 95% CI 0.969–0.995, P = 0.008). Conclusions The use of a shared-resource ioMRI in neurosurgery did not demonstrate increased rates of infection compared with the current available literature. The likelihood of infection decreased with the accumulating number of operations, underlining the importance of surgical staff training after the introduction of a shared-resource ioMRI.

The maintenance of normal body weight is disrupted in patients with anorexia nervosa (AN) for prolonged periods of time. Prior to the onset of AN, premorbid body mass index (BMI) spans the entire range from underweight to obese. After recovery, patients have reduced rates of overweight and obesity. As such, loci involved in body weight regulation may also be relevant for AN and vice versa. Our primary analysis comprised a cross-trait analysis of the 1000 single-nucleotide polymorphisms (SNPs) with the lowest P-values in a genome-wide association meta-analysis (GWAMA) of AN (GCAN) for evidence of association in the largest published GWAMA for BMI (GIANT). Subsequently we performed sex-stratified analyses for these 1000 SNPs. Functional ex vivo studies on four genes ensued. Lastly, a look-up of GWAMA-derived BMI-related loci was performed in the AN GWAMA. We detected significant associations (P-values

Objective: To explore general practitioners (GPs’) experiences from consultations when a patient’s request is denied, and outcomes of such incidents.Design and participants: We conducted a qualitative study with semi-structured individual interviews with six GPs in Norway. We asked them to tell about experiences from specific encounters where they had refused a patient’s request. The texts were analysed with Systematic Text Condensation, a method for thematic cross-case analysis.Main outcome measures: Accounts of experiences from consultations when GPs refused their patients’ requests.Results: Subjects of dispute included clinical topics like investigation and treatment, certification regarding welfare benefits and medico-legal issues, and administrative matters. The arguments took different paths, sometimes settled by reaching common ground but more often as unresolved disagreement with anger or irritation from the patient, sometimes with open hostility and violence. The aftermath and outcomes of these disputes lead to strong emotional impact where the doctors reflected upon the incidents and sometimes regretted their handling of the consultation. Some long-standing and close patient–doctor relationships were injured or came to an end.Conclusions: The price for denying a patient’s request may be high, and GPs find themselves uncomfortable in such encounters. Skills pertaining to this particular challenge could be improved though education and training, drawing attention to negotiation of potential conflicts. Also, the notion that doctors have a professional commitment to his or her own autonomy and to society should be restored, through increased emphasis on core professional ethics in medical education at all levels.

Background. Few Americans obtain all 41 guideline-recommended preventive services for nonpregnant adults. We assessed patient interest in prioritizing their preventive care needs. Methods. We conducted a mixed-methods study, with 4 focus groups ( N = 28) at a single institution and a nationwide survey ( N = 2,103). Participants were middle-aged and older adults with preventive care needs. We obtained reactions to written materials describing the magnitude of benefit from major preventive services, including both absolute and relative benefits. Recommendations were individualized for patient risk factors (“individualized preventive care recommendations”). Focus groups assessed patient interest, how patients would want to discuss individualized recommendations with their providers, and potential for individualized recommendations to influence patient decision making. Survey content was based on focus groups and analyzed with logistic regression. Results. Patients expressed strong interest in individualized recommendations. Among survey respondents, an adjusted 88.2% (95% confidence interval [CI] = 86.7% to 89.7%) found individualized recommendations very easy to understand, 77.2% (95% CI = 75.3% to 79.1%) considered them very useful, and 64.9% (95% CI = 62.8% to 67.0%) highly trustworthy (each ≥6/7 on Likert scale). Three quarters of participants wanted to receive their own individualized recommendations in upcoming primary care visits (adjusted proportion = 77.5%, 95% CI = 75.6% to 79.4%). Both focus group and survey participants supported shared decision making and reported that individualized recommendations would improve motivation to obtain preventive care. Half of survey respondents reported that they would be much more likely to visit their doctor if they knew individualized recommendations would be discussed, compared with 4.2% who would not be more likely to visit their doctor. Survey respondents already prioritized preventive services, stating they were most likely to choose quick/easy preventive services and least likely to choose expensive preventive services (adjusted proportions, 63.8% and 8.5%, respectively). Results were consistent in sensitivity analyses. Conclusions. Individualized preventive care recommendations are likely to be well received in primary care and might motivate patients to improve adherence to evidence-based care.

The study first summarizes the characteristics of various intelligent algorithms such as improved genetic algorithm, differential evolution algorithm and ant colony algorithm adopted in test paper generation, and then proposes the parallel evolution of swarm based on ideas of shared intelligent algorithm and dynamic multi branches tree algorithm, so as to improve searching speed and achieve the effect of short-time optimization. During forming optimal individuals, classified training and repeated recognition by virtue of dynamic multi branches tree can not only avoid premature appearance but also get strong convergence. In addition, when the constraints change, the existing knowledge can be inherited. Facts have shown that this algorithm has certain theoretical significance and reference value to the development of intelligent test paper generation algorithm.

Background In the Dutch health care system, general practitioners hold a central position. They store information from all health care providers who are involved with their patients in their electronic health records. Web-based access to the summary record in general practice through a personal health record (PHR) may increase patients’ insight into their medical conditions and help them to be involved in their care. Objective We describe the protocol that we will use to investigate the utilization of patients’ digital access to the summary of their medical records in general practice through a PHR and its effects on the involvement of patients in their care. Methods We will conduct a multilevel mixed-methods study in which the PHR and Web-based access to the summary record will be offered for 6 months to a random sample of 500 polypharmacy patients, 500 parents of children aged Results Enrollment was completed in May 2017 and the possibility to view GP records through the PHR was implemented in December 2017. Data analysis is currently underway and the first results are expected to be submitted for publication in autumn 2019. Conclusions We expect that the findings of this study will be useful to health care providers and health care organizations that consider introducing the use of PHR and Web-based access to records and to those who have recently started using these. Trial Registration Netherlands Trial Registry NTR6395; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6395 (Archived by WebCite at http://www.webcitation.org/71nc8jzwM) Registered Report Identifier RR1-10.2196/10193

Contains fulltext : 136814.pdf (Publisher’s version ) (Open Access) Patient-centered care requires different approaches depending on the clinical situation. Motivational interviewing and shared decision making provide practical and well-described methods to accomplish patient-centered care in the context of situations where medical evidence supports specific behavior changes and the most appropriate action is dependent on the patient's preferences. Many clinical consultations may require elements of both approaches, however. This article describes these 2 approaches-one to address ambivalence to medically indicated behavior change and the other to support patients in making health care decisions in cases where there is more than one reasonable option-and discusses how clinicians can draw on these approaches alone and in combination to achieve patient-centered care across the range of health care problems.

In recent decades, debates surrounding access to medicines have moved on to discussions on new ways of conducting research and development (R&D) to ensure equitable access from the outset. The market failure in the current R&D system and the need for new models has been apparent for decades [1,2]. A new framework for research and development to address health gaps primarily affecting low– and middle–income countries (LMICs) is currently one of the most contentious issues being debated at the World Health Organization (WHO). While WHO member states agree that urgent action is needed, deciding upon models, implementation mechanisms and funding commitments has proven difficult [3]. The report of the Consultative Expert Working Group on Research and Development: Financing and Coordination (CEWG), published in 2012, marks the most recent milestone in the search of a new RD a more sustainable and efficient funding source for RD and direct benefits through the products of R&D into new antibiotics and vector borne diseases. Box 1 The Consultative Expert Working Group on Research and Development: Financing and Coordination (CEWG) WHAT The CEWG was established by the 63rd World Health Assembly in 2010 and consisted of professionals with a wide variety of expertise. The final report was published in April 2012 and included a set of key recommendations to address the gaps in health R&D [1,4]. WHY Securing access to affordable health technologies in low– and middle income countries continues to be among the greatest challenges in global health. Underpinning the challenge is a systematic market failure in health R&D which leads to an underproduction of public goods. Incentives such as intellectual property (IP) rights have traditionally been used to address this underproduction. However, the IP model, which incentivises private industry to invest in health R&D provided they get a monopoly on the end product, has failed to provide incentives for the development of health technologies addressing diseases that primarily affect the poor. KEY RECOMMENDATIONS Approaches to R&D: – Open knowledge innovation, equitable licensing and patent pools should be embraced Funding mechanisms: – Countries should commit to spend 0.01% of GDP on government funded R&D to meet the health needs of the poor Pooling resources: – 20–50% of the funds raised should be channelled through a pooled mechanism Coordination: – A global health observatory under the auspices of WHO should be established [5,6] Implementation: – A binding global instrument for health R&D and innovation should be implemented – Formal negotiations on an international convention should be initiated. CHALLENGES All member states agree that the market failure in health R&D is a pressing global health challenge. However, member states, in particular high–income countries, have been reluctant to support concrete, binding commitments. The most contentious issues have been the financing commitment of 0.01% of GDP and the suggested implementation through a binding convention.

Contains fulltext : 182459.pdf (Publisher’s version ) (Open Access) BACKGROUND: Seniors with loss of autonomy may face decisions about whether they should stay at home or move elsewhere. Most seniors would prefer to stay home and be independent for as long as possible, but most are unaware of options that would make this possible. OBJECTIVE: The study aimed to develop and test the acceptability of an interactive website for seniors, their caregivers, and health professionals with short interlinked videos presenting information about options for staying independent at home. METHODS: The approach for design and data collection varied, involving a multipronged, user-centered design of the development process, qualitative interviews, and end-user feedback to determine content (ie, needs assessment) in phase I; module development (in English and French) in phase II; and survey to test usability and acceptability with end users in phase III. Phase I participants were a convenience sample of end users, that is, seniors, caregivers, and professionals with expertise in modifiable factors (eg, day centers, home redesign, equipment, community activities, and finances), enabling seniors to stay independent at home for longer in Quebec and Alberta, Canada. Phase II participants were bilingual actors; phase III participants included phase I participants and new participants recruited through snowballing. Qualitative interviews were thematically analyzed in phase II to determine relevant topics for the video-scripts, which were user-checked by interview participants. In phase III, the results of a usability questionnaire were analyzed using descriptive statistics. RESULTS: In phase I, interviews with 29 stakeholders, including 4 seniors, 3 caregivers, and 22 professionals, showed a need for a one-stop information resource about options for staying independent at home. They raised issues relating to 6 categories: cognitive autonomy, psychological or mental well-being, functional autonomy, social autonomy, financial autonomy, and people involved. A script was developed and evaluated by participants. In phase II, after 4 days in a studio with 15 bilingual actors, 30 videos were made of various experts (eg, family doctor, home care nurse, and social worker) presenting options and guidance for the decision-making process. These were integrated into an interactive website, which included a comments tool for visitors to add information. In phase III (n=21), 8 seniors (7 women, mean age 75 years), 7 caregivers, and 6 professionals evaluated the acceptability of the module and suggested improvements. Clarity of the videos scored 3.6 out of 4, length was considered right by 17 (separate videos) and 13 participants (all videos together), and 18 participants considered the module acceptable. They suggested that information should be tailored more, and that seniors may need someone to help navigate it. CONCLUSIONS: Our interactive website with interlinked videos presenting information about options for staying independent at home was deemed acceptable and potentially helpful by a diverse group of stakeholders.

With rising costs in health care, especially in the area of pharmaceuticals, patients are expected to be more involved in managing their care. Concepts such as shared decision-making or self-management support in chronic illness have been suggested as a way to facilitate this process and to empower patients. It is unclear however, whether the self-responsible patient role outlined in these concepts aligns with the patient's needs. The aim of this paper is to examine this proposed self-responsible role with regard to the patient's medication management needs and to discuss whether self-responsibility and autonomy are suitable concepts when illness-related challenges become difficult or complex. Selected findings from a qualitative longitudinal study on medication management from the perspective of people with chronic conditions are presented. Results from interviews with 27 patients indicate that both the patient's view and the challenges people with chronic conditions face in everyday life remain a 'blind spot' in health care. Providing information to improve health literacy may not be enough; there is a need to systematically support patients in developing skills to adequately (self-)manage a chronic condition.

Background Clinicians face challenges in promoting colorectal cancer screening due to multiple competing demands. A decision aid that clarifies patient preferences and improves decision quality can aid shared decision making and be effective at increasing colorectal cancer screening rates. However, exactly how such an intervention improves shared decision making is unclear. This study, funded by the National Cancer Institute, seeks to provide detailed understanding of how an interactive decision aid that elicits patient’s risks and preferences impacts patient-clinician communication and shared decision making, and ultimately colorectal cancer screening adherence. Methods/Design This is a two-armed single-blinded randomized controlled trial with the target of 300 patients per arm. The setting is eleven community and three academic primary care practices in Metro Detroit. Patients are men and women aged between 50 and 75 years who are not up to date on colorectal cancer screening. ColoDATES Web (intervention arm), a decision aid that incorporates interactive personal risk assessment and preference clarification tools, is compared to a non-interactive website that matches ColoDATES Web in content but does not contain interactive tools (control arm). Primary outcomes are patient uptake of colorectal cancer screening; patient decision quality (knowledge, preference clarification, intent); clinician’s degree of shared decision making; and patient-clinician concordance in the screening test chosen. Secondary outcome incorporates a Structural Equation Modeling approach to understand the mechanism of the causal pathway and test the validity of the proposed conceptual model based on Theory of Planned Behavior. Clinicians and those performing the analysis are blinded to arms. Discussion The central hypothesis is that ColoDATES Web will improve colorectal cancer screening adherence through improvement in patient behavioral factors, shared decision making between the patient and the clinician, and concordance between the patient’s and clinician’s preferred colorectal cancer screening test. The results of this study will be among the first to examine the effect of a real-time preference assessment exercise on colorectal cancer screening and mediators, and, in doing so, will shed light on the patient-clinician communication and shared decision making ‘black box’ that currently exists between the delivery of decision aids to patients and subsequent patient behavior. Trial Registration ClinicalTrials.gov ID NCT01514786

This paper describes the work done at the Carinthia University of Applied Sciences towards integrating VISIR-based labs on the iLab architecture. The Virtual Systems in Reality (VISIR) project is carried out by the Blekinge Institute of Technology, Sweden and features a platform for performing experiments in different domains.