Shared Decision Making About Starting Anti-TNFs: A Pediatric Perspective.
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ABSTRACT:
SUBMITTER: Michel HK
PROVIDER: S-EPMC7055652 | biostudies-literature | 2019 Mar
REPOSITORIES: biostudies-literature
Publications
Shared Decision Making About Starting Anti-TNFs: A Pediatric Perspective.
Michel Hilary K HK Noll Robert B RB Siripong Nalyn N Kim Sandra C SC Lipstein Ellen A EA
Journal of pediatric gastroenterology and nutrition 20190301 3
Shared decision making (SDM) is central to patient-centered medicine and has the potential to improve outcomes for pediatric patients with inflammatory bowel diseases. We surveyed specialists about their use of SDM in the decision to start a tumor necrosis factor-α inhibitor in pediatric patients. Results were compared between those who reported using SDM and those who did not. Of 209 respondents, 157 (75%) reported using SDM. Physician/practice characteristics were similar between users and non ...[more]
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Project description:BackgroundShared decision-making (SDM) is rarely implemented in pediatric practice. Pediatric health decision-making differs from that of adult practice. Yet, little is known about the factors that influence the implementation of pediatric shared decision-making (SDM). We synthesized pediatric SDM barriers and facilitators from the perspectives of healthcare providers (HCP), parents, children, and observers (i.e., persons who evaluated the SDM process, but were not directly involved).MethodsWe conducted a systematic review guided by the Ottawa Model of Research Use (OMRU). We searched MEDLINE, EMBASE, Cochrane Library, CINAHL, PubMed, and PsycINFO (inception to March 2017) and included studies that reported clinical pediatric SDM barriers and/or facilitators from the perspective of HCPs, parents, children, and/or observers. We considered all or no comparison groups and included all study designs reporting original data. Content analysis was used to synthesize barriers and facilitators and categorized them according to the OMRU levels (i.e., decision, innovation, adopters, relational, and environment) and participant types (i.e., HCP, parents, children, and observers). We used the Mixed Methods Appraisal Tool to appraise study quality.ResultsOf 20,008 identified citations, 79 were included. At each OMRU level, the most frequent barriers were features of the options (decision), poor quality information (innovation), parent/child emotional state (adopter), power relations (relational), and insufficient time (environment). The most frequent facilitators were low stake decisions (decision), good quality information (innovation), agreement with SDM (adopter), trust and respect (relational), and SDM tools/resources (environment). Across participant types, the most frequent barriers were insufficient time (HCPs), features of the options (parents), power imbalances (children), and HCP skill for SDM (observers). The most frequent facilitators were good quality information (HCP) and agreement with SDM (parents and children). There was no consistent facilitator category for observers. Overall, study quality was moderate with quantitative studies having the highest ratings and mixed-method studies having the lowest ratings.ConclusionsNumerous diverse and interrelated factors influence SDM use in pediatric clinical practice. Our findings can be used to identify potential pediatric SDM barriers and facilitators, guide context-specific barrier and facilitator assessments, and inform interventions for implementing SDM in pediatric practice.Trial registrationPROSPERO CRD42015020527.
| S-EPMC6339273 | biostudies-literature
Project description:ObjectiveTo develop recommendations for pediatric shared decision-making (SDM).MethodsWe conducted a Delphi method study from 2020 to 2021 with an international panel (n = 21) of clinicians, researchers, and parents with expertise in pediatric SDM. We conducted semistructured interviews to identify the key processes of pediatric SDM. We coded the interviews using content analysis and developed a questionnaire on the potential processes of pediatric SDM. Using a Likert scale, panelists evaluated each process twice, once for simple decisions and once for complex decisions. Panelists were provided with a summary of the results and evaluated each process again. The processes that were agreed on for simple and complex decisions were reported as "fundamental processes." The processes that were agreed on for complex decisions were reported as "additional processes."ResultsA total of 79 recommendations were developed, including 29 fundamental processes and 14 additional processes for complex decisions. A recurring theme was the importance of personalizing the decision-making process. For example, the panel recommended that physicians should assess the family and child's desired roles in the decision-making process, assess their desired level of directiveness, and elicit and clarify their values, preferences, and goals. The panel also disagreed on several subprocesses, such as how to determine the child's role and the appropriate level of directiveness.ConclusionsAn international expert panel developed recommendations for pediatric SDM for both simple and complex decisions. The recommendations highlight the importance of personalizing the decision-making process.
| S-EPMC9647592 | biostudies-literature
Project description:BackgroundShared decision-making (SDM) is widely recommended and required by the Centers for Medicare and Medicaid for patients considering lung cancer screening (LCS).ObjectiveWe examined clinicians' communication practices and perceived barriers of SDM for LCS at three medical centers with established screening programs.DesignMulticenter qualitative study of clinicians participating in LCS.ApproachWe performed semi-structured interviews, which were transcribed and analyzed using directed content analysis, guided by a theoretical model of patient-clinician communication.ParticipantsWe interviewed 24 clinicians including LCS coordinators (2), pulmonologists (3), and primary care providers (17), 4 of whom worked for the LCS program, a thoracic surgeon, and a radiologist.ResultsAll clinicians agreed with the goal of SDM, to ensure the screening decision was congruent with the patient's values. The depth and type of information presented by each clinician role varied considerably. LCS coordinators presented detailed information including numeric estimates of benefit and harm. Most PCPs explained the process more generally, focusing on logistics and the high rate of nodule detection. No clinician explicitly elicited values or communication preferences. Many PCPs tailored the conversation based on their implicit understanding of patients' values and preferences, gained from past experiences. PCPs reported that time, lack of detailed personal knowledge of LCS, and patient preferences were barriers to SDM. Many clinicians perceived that a significant proportion of patients were not interested in specific percentages and preferred to receive a clinician recommendation.ConclusionsOur results suggest that clinicians support the goal of SDM for LCS decisions but PCPs may not perform some of its elements. The lack of completion of some elements, such as PCPs' lack of in-depth information exchange, may reflect perceived patient preferences for communication. As LCS is implemented, further research is needed to support a personalized, patient-centered approach to produce better outcomes.
| S-EPMC7018920 | biostudies-literature
Project description:ObjectiveThe objective of this study is to determine the factors influencing pancreatic surgery patients' perceptions of the shared decision-making process (SDM).BackgroundDecision-making in pancreatic surgery is complicated by the risk of morbidity and mortality and risk of early recurrence of disease. Improvement in SDM has the potential to improve the receipt of goal- and value-concordant care.MethodsThis cross-sectional survey included patients who underwent pancreatic surgery. The following components were studied in relation to SDM: modified satisfaction with decision scale (SWD), modified decisional regret scale (DRS), quality of physician and patient interaction, and the impact of quality of life (FACT-Hep). Correlations were computed using Pearson's correlation score and a regression model.ResultsThe survey completion rate was 72.2% (of 40/55) and the majority (72.5%) of patients underwent pancreaticoduodenectomy. There were significant positive relationships between the SDM measure and (DRS, SWD; r = 0.70, P < 0.001) and responses to questions regarding how well the patient's actual recovery matched their expectations before treatment (r = 0.62, P < 0.001). The quality of the physician-patient relationship correlated with how well recovery matched expectations (r = 0.53, P = 0.002). SDM measure scores were significant predictors of the decision evaluation measure (R2(adj) = 0.48, P < 0.001), FACT-Hep (R2(adj) = 0.15, P < 0.001), and recovery expectations measure (R2(adj) = 0.37, P < 0.001).ConclusionsImproved SDM in pancreatic surgery is associated with more realistic recovery expectations, decreased decisional regret, and improved quality of life.
| S-EPMC10431427 | biostudies-literature
Project description:Background. Accurate diagnosis of patients' preferences is central to shared decision making. Missing from clinical practice is an approach that links pretreatment preferences and patient-reported outcomes. Objective. We propose a Bayesian collaborative filtering (CF) algorithm that combines pretreatment preferences and patient-reported outcomes to provide treatment recommendations. Design. We present the methodological details of a Bayesian CF algorithm designed to accomplish 3 tasks: 1) eliciting patient preferences using conjoint analysis surveys, 2) clustering patients into preference phenotypes, and 3) making treatment recommendations based on the posttreatment satisfaction of like-minded patients. We conduct a series of simulation studies to test the algorithm and to compare it to a 2-stage approach. Results. The Bayesian CF algorithm and 2-stage approaches performed similarly when there was extensive overlap between preference phenotypes. When the treatment was moderately associated with satisfaction, both methods made accurate recommendations. The kappa estimates measuring agreement between the true and predicted recommendations were 0.70 (95% confidence interval = 0.052-0.88) and 0.73 (0.56-0.90) under the Bayesian CF and 2-stage approaches, respectively. The 2-stage approach failed to converge in settings in which clusters were well separated, whereas the Bayesian CF algorithm produced acceptable results, with kappas of 0.73 (0.56-0.90) and 0.83 (0.69-0.97) for scenarios with moderate and large treatment effects, respectively. Limitations. Our approach assumes that the patient population is composed of distinct preference phenotypes, there is association between treatment and outcomes, and treatment effects vary across phenotypes. Findings are also limited to simulated data. Conclusion. The Bayesian CF algorithm is feasible, provides accurate cluster treatment recommendations, and outperforms 2-stage estimation when clusters are well separated. As such, the approach serves as a roadmap for incorporating predictive analytics into shared decision making.
| S-EPMC7676870 | biostudies-literature
Project description:Policymakers and researchers are strongly encouraging clinicians to support patient autonomy through shared decision-making (SDM). In setting policies for clinical care, decision-makers need to understand that current models of SDM have tended to focus on major decisions (e.g., surgeries and chemotherapy) and focused less on everyday primary care decisions. Most decisions in primary care are substantive everyday decisions: intermediate-stakes decisions that occur dozens of times every day, yet are non-trivial for patients, such as whether routine mammography should start at age 40, 45, or 50. Expectations that busy clinicians use current models of SDM (here referred to as "detailed" SDM) for these decisions can feel overwhelming to clinicians. Evidence indicates that detailed SDM is simply not realistic for most of these decisions and without a feasible alternative, clinicians usually default to a decision-making approach with little to no personalization. We propose, for discussion and refinement, a compromise approach to personalizing these decisions (everyday SDM). Everyday SDM is based on a feasible process for supporting patient autonomy that also allows clinicians to continue being respectful health advocates for their patients. We propose that alternatives to detailed SDM are needed to make progress toward more patient-centered care.
| S-EPMC7572954 | biostudies-literature
Project description:Background: Choosing between deep brain stimulation (DBS), Levodopa-Carbidopa intestinal gel (LCIG), or continuous subcutaneous Apomorphine infusion (CSAI) in advanced Parkinson's disease is a complex decision. It is paramount to combine evidence with the professional's expertise and the patient's preferences. The patient's preferences can be elicited and integrated into the treatment choice through shared decision-making (SDM). Objective: In this cross-sectional survey study we explored patient's involvement in decision-making and identified facilitators and barriers for shared decision-making (SDM) in advanced Parkinson from the patient's perspective. Methods: We invited 180 Dutch persons with Parkinson who started DBS, LCIG, or CSAI in the previous 3 years to complete a questionnaire. Questions covered three topics; (1) preferred and experienced roles in the decision process for an advanced treatment, (2) information needs to make a decision and actually received information, and (3) factors that had positively or negatively influenced shared decision-making (SDM). Results: One hundred and twenty one participants completed the questionnaire. The large majority preferred to be involved in the decision-making (93%), and most respondents had experienced an active role (85%). In about half of the respondents (47%), their preferred role did not match their experienced role; 28% had a more active role than they would have preferred. Although 77% perceived to be fully informed at the time of decision, only 41% stated they knew all three therapeutic options. Participants identified the most important facilitators for shared decision-making (SDM) at the patient's level (i.e., perceiving the decision to be his own choice), at the neurologist's level (i.e., having expertise on all treatment options, and taking time for the decision), and within the professional-patient relationship (i.e., trust and having an open discussion). The main barriers for shared decision-making (SDM) existed at the patient's level (i.e., perceiving there is no choice), neurologist's level (own treatment preference), and organizational level (i.e., no research available that compares treatments, multiple professionals involved, and lack of consultation time). Conclusions: Patients want to be involved and feel involved when choosing an advanced treatment, but often do not know all treatment options. Implementation of true patient involvement needs personalized information provision on all treatment options and improvement on how this information is communicated.
| S-EPMC6706819 | biostudies-literature
Project description:BackgroundThe objective of this study was to ascertain the importance rankings of factors affecting the implementation of shared decision-making (SDM) in medical students in China and determine whether these factors were consistent across the respondents' individual characteristics.MethodStudents studying clinical medicine were recruited from three medical universities in China. A cross-sectional online survey using best-worst object scaling with a balanced incomplete block design was adopted to investigate their preference towards implementing SDM in China. Count analysis, multinomial logit analysis and mixed logit analysis were used to estimate the preference heterogeneity of the SDM factors among respondents.ResultsA total of 574 medical students completed the online survey. The three most important factors for implementing SDM were trust and respect, (providing) high-quality medical information and multi-disciplinary collaboration. The mixed logit regression model identified significant heterogeneity in SDM preferences among respondents, and sub-group analysis showed that some heterogeneities varied in respondents by sex, study programs and their experience of visiting doctors.ConclusionThe importance rankings provide rich information for implementing SDM and facilitate the reform of education in medical schools in China. However, the heterogeneities in SDM preference need further explorations.
| S-EPMC7709333 | biostudies-literature
Project description:BackgroundPhysicians recommend electrophysiological (EP) procedures to patients with arrhythmic risk. This involves shared decision-making (SDM). Patients increasingly search for additional information online. Freely available online videos are an attractive source.ObjectiveWe assessed freely available online videos for EP procedures from the perspective of SDM to determine if such videos can be shared with patients for SDM.MethodsWe searched for freely available online videos related to 6 common EP procedures limited to English language and duration between 1 and 10 minutes using Google and Bing. Data collected included date and source of upload, number of hits, and duration. Videos were assessed systematically for understandability, actionability (PEMAT tool), relatability, teamwork, and mention of risk.ResultsA total of 78 videos met our inclusion criteria, out of 960 video links. Overall inter-rater agreement was moderate to good. Video upload dates spanned 12 years and number of hits ranged from 87 to 594,000. The majority of videos (63%) were produced by health care systems or academic institutions. For all 78 videos the mean total PEMAT tool score was 48.6%. Thirty-five percent of videos showed a patient engaged in a conversation with the physician or a team member; 41% of videos showed other team members. The potential for complications was mentioned in 10%.ConclusionThe majority of online, freely available videos for common EP procedures lack features useful for SDM and may not be helpful for sharing with patients from that perspective. It is possible to create high-quality videos that can facilitate SDM.
| S-EPMC9422056 | biostudies-literature
Project description:The use of biological drugs has improved outcomes in pediatric inflammatory bowel disease (IBD). Prediction of the response to biological drugs would be extremely useful in IBD, and even more so in children, who are still growing physically and psychologically. Specific clinical, biochemical, and genetic parameters are considered predictive of response to biological drugs, although few studies have been carried out in children with IBD. In this review, we present current evidence on biological treatments used in pediatric IBD and the available biomarkers of response. We examine demographics, clinical characteristics, biomarkers (genetic, genomic, and cellular), and microbiota.
| S-EPMC8617733 | biostudies-literature