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 CRD42015020527Electronic supplementary materialThe online version of this article (10.1186/s13012-018-0851-5) contains supplementary material, which is available to authorized users.
Introduction. The Ottawa Decision Support Framework (ODSF) has guided practitioners and patients facing difficult decisions for 20 years. It asserts that decision support interventions that address patients’ decisional needs improve decision quality. Purpose. To update the ODSF based on a synthesis of evidence. Methods. We conducted an overview of systematic reviews, searching 9 electronic databases. Eligible reviews included decisional needs assessments, decision support interventions, and decisional outcome measures guided by the ODSF. We extracted data and synthesized results narratively. Eight ODSF developers/expert users from 4 disciplines revised the ODSF. Results. Of 4656 citations, we identified 4 eligible reviews (>250 studies, >100 different decisions, >50,000 patients, 18 countries, 5 continents). They reported current ODSF decisional needs and their most frequent manifestations in the areas of inadequate knowledge/information, unclear values, decisional conflict/uncertainty, and inadequate support. They uncovered 11 new manifestations of 6 decisional needs. Using the Decisional Conflict Scale (DCS) to assess decisional needs, average scores were elevated at baseline and declined shortly after decision making, even without information interventions. Patient decision aids were superior to usual care in reducing total DCS scores and improving decision quality. We revised the ODSF by refining definitions of 6 decisional needs and adding new interventions to address 4 needs. We added a decision process outcome and eliminated secondary outcomes unlikely to improve across a range of decisions, retaining the implementation/continuance of the chosen option and appropriate use/costs of health services. Conclusions. We updated the ODSF to reflect the current evidence and identified implications for practice and further research.
Background. The Ottawa Decision Support Framework (ODSF) has been used for 20 years to assess and address people’s decisional needs. The evidence regarding ODSF decisional needs has not been synthesized. Objectives. To synthesize evidence from ODSF-based decisional needs studies, identify new decisional needs, and validate current ODSF decisional needs. Methods. A mixed-studies systematic review. Nine electronic databases were searched. Inclusion criteria: studies of people’s decisional needs when making health or social decisions for themselves, a child, or a mentally incapable person, as reported by themselves, families, or practitioners. Two independent authors screened eligibility, extracted data, and quality appraised studies using the Mixed Methods Appraisal Tool. Data were analyzed using narrative synthesis. Results. Of 4532 citations, 45 studies from 7 countries were eligible. People’s needs for 101 unique decisions (85 health, 16 social) were reported by 2857 patient decision makers ( n = 36 studies), 92 parent decision makers ( n = 6), 81 family members ( n = 5), and 523 practitioners ( n = 21). Current ODSF decisional needs were reported in 2 to 40 studies. For 6 decisional needs, there were 11 new (manifestations): 1) information (overload, inadequacy regarding others’ experiences with options), 2) difficult decisional roles (practitioner, family involvement, or deliberations), 3) unrealistic expectations (difficulty believing outcome probabilities apply to them), 4) personal needs (religion/spirituality), 5) difficult decision timing (unpredictable), and 6) unreceptive decisional stage (difficulty accepting condition/need for treatment, powerful emotions limiting information processing, lacking motivation to consider delayed/unpredictable decisions). Limitations. Possible publication bias (only peer-reviewed journals included). Possible missed needs (non-ODSF studies, patient decision aid development studies, 3 ODSF needs added in 2006). Conclusion. We validated current decisional needs, identified 11 new manifestations of 6 decisional needs, and recommended ODSF revisions.
Background. Patient decision aids (PtDAs) are effective interventions to support patient involvement in health care decisions, but there is little use in practice. Our study aimed to determine subsequent PtDA use in clinical practice following published randomized controlled trials. Design. A descriptive study using an e-mail-embedded questionnaire survey targeting authors of 133 trials included in Cochrane Reviews of PtDAs (106 authors). We classified PtDA level of use as a) implementation, defined as integrating within care processes; b) dissemination to target users with planned strategies; and c) diffusion, defined as passive, unplanned spread. We conducted content analysis to identify barriers and enablers guided by the Ottawa Model of Research Use. Results. Ninety-eight authors responded (92.5%) on 108 trialed PtDAs. Reported levels of use were implementation ( n = 29; 28%), dissemination to target user(s) ( n = 9; 9%), and diffusion ( n = 7; 7%); 57 (55%) reported no uptake, and 1 had no response (1%). Barriers to use in clinical practice were identified at the level of researchers (e.g., lack of posttrial plan), PtDAs (e.g., outdated, delivery mechanism), clinicians (e.g., disagreed with PtDA use), and practice environment (e.g., infrastructure support; funding). Enablers were online delivery, organizational endorsement (e.g., professional organization, charity, government), and design for and integration into the care process. Limitations. Self-report bias and potential for recall bias. Conclusions. Only 44% of PtDA trial authors indicated some level of subsequent use following their trial. The most commonly reported barriers were lack of funding, outdated PtDAs, and clinician disagreement with PtDA use. To improve subsequent use, researchers should codesign PtDAs with end users to ensure fit with clinical practice and develop an implementation plan. National systems (e.g., platforms, endorsement, funding) can enable use.
Implantable cardioverter-defibrillators (ICDs) are used for patients at risk of sudden cardiac death. Patients considering ICD therapy are faced with several preference-sensitive decisions. Our aim was to explore patients' ICD decision-making experiences from the decision to implant to the consideration of deactivation at end of life. We conducted an integrative review using Whittemore and Knafl's five steps. MEDLINE, CINAHL, PubMed, PsycINFO, and the Cochrane library were searched from 2000 to 2013. Eligible studies focused on the patient response regarding ICD decision-making. Key themes were identified and used as a framework to discuss findings through the chronological course of decisions faced by these patients. Of 354 potential citations, 25 articles were included. The trajectory of key decision points was whether or not to initiate ICD therapy, replace the battery, and deactivate at end of life. Three common themes from patients' perspectives were the influence of the patient-practitioner consultation on knowledge uptake, patients' decision-making preference, and their desire to live. Patients faced with ICD-related decisions often misunderstood the functionality of their ICD, or overestimated its benefit. They also expressed mixed preferences for the desire to be involved in decisions. The decisions around ICDs are particularly difficult for patients given the life and death trade off. Clinicians involved in the care of these patients could better support them by verifying their understanding and eliciting their preferences. Using a shared decision-making approach has the potential to achieve improved patient outcomes.
Purpose To determine the effectiveness of patient decision aids when used with patients who face cancer-related decisions. Patients and Methods Two reviewers independently screened the 105 trials in the original 2017 Cochrane review to identify eligible trials of patient decision aids across the cancer continuum. Primary outcomes were attributes of the choice and decision-making process. Secondary outcomes were patient behavior and health system effects. A meta-analysis was conducted for similar outcome measures. Results Forty-six trials evaluated patient decision aids for cancer care, including 27 on screening decisions (59%), 12 on treatments (26%), four on genetic testing (9%), and three on prevention (6%). Common decisions were aboutprostate cancer screening (30%), colorectal cancer screening (22%), breast cancer treatment (13%), and prostate cancer treatment (9%). Compared with the control groups (usual care or alternative interventions), the patient decision aid group improved the match between the chosen option and the features that mattered most to the patient as demonstrated by improved knowledge (weighted mean difference, 12.88 of 100; 95% CI, 9.87 to 15.89; 24 trials), accurate risk perception (risk ratio [RR], 1.77; 95% CI, 1.22 to 2.56; six trials), and value-choice agreement (RR, 2.76; 95% CI, 1.57 to 4.84; nine trials). Compared with controls, the patient decision aid group improved the decision-making process with decreased decisional conflict (weighted mean difference, −9.56 of 100; 95% CI, −13.90 to −5.23; 12 trials), reduced clinician-controlled decision making (RR, 0.57; 95% CI, 0.41 to 0.79; eight trials), and fewer patients being indecisive (RR, 0.59; 95% CI, 0.45 to 0.78; nine trials). Conclusion Patient decision aids improve the attributes of the choice made and decision-making process for patients who face cancer-related decisions.
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