Shared decision making (SDM), an integrative patient-provider communication process emphasizing discussion of scientific evidence and patient/family values, may improve quality care delivery, promote ...evidence-based practice, and reduce overuse of surgical care. Little is known, however, regarding SDM in elective surgical practice. The purpose of this systematic review is to synthesize findings of studies evaluating use and outcomes of SDM in elective surgery.
PubMed, Cochrane CENTRAL, EMBASE, CINAHL, and SCOPUS electronic databases.
We searched for English-language studies (January 1, 1990, to August 9, 2015) evaluating use of SDM in elective surgical care where choice for surgery could be ascertained. Identified studies were independently screened by 2 reviewers in stages of title/abstract and full-text review. We abstracted data related to population, study design, clinical dilemma, use of SDM, outcomes, treatment choice, and bias.
Of 10,929 identified articles, 24 met inclusion criteria. The most common area studied was spine (7 of 24), followed by joint (5 of 24) and gynecologic surgery (4 of 24). Twenty studies used decision aids or support tools, including modalities that were multimedia/video (13 of 20), written (3 of 20), or personal coaching (4 of 20). Effect of SDM on preference for surgery was mixed across studies, showing a decrease in surgery (9 of 24), no difference (8 of 24), or an increase (1 of 24). SDM tended to improve decision quality (3 of 3) as well as knowledge or preparation (4 of 6) while decreasing decision conflict (4 of 6).
SDM reduces decision conflict and improves decision quality for patients making choices about elective surgery. While net findings show that SDM may influence patients to choose surgery less often, the impact of SDM on surgical utilization cannot be clearly ascertained.
Background. With the increasing complexity of decisions in pediatric medicine, there is a growing need to understand the pediatric decision-making process. Objective. To conduct a narrative review of ...the current research on parent decision making about pediatric treatments and identify areas in need of further investigation. Methods. Articles presenting original research on parent decision making were identified from MEDLINE (1966–6/2011), using the terms “decision making,” “parent,” and “child.” We included papers focused on treatment decisions but excluded those focused on information disclosure to children, vaccination, and research participation decisions. Results. We found 55 papers describing 52 distinct studies, the majority being descriptive, qualitative studies of the decision-making process, with very limited assessment of decision outcomes. Although parents’ preferences for degree of participation in pediatric decision making vary, most are interested in sharing the decision with the provider. In addition to the provider, parents are influenced in their decision making by changes in their child’s health status, other community members, prior knowledge, and personal factors, such as emotions and faith. Parents struggle to balance these influences as well as to know when to include their child in decision making. Conclusions. Current research demonstrates a diversity of influences on parent decision making and parent decision preferences; however, little is known about decision outcomes or interventions to improve outcomes. Further investigation, using prospective methods, is needed in order to understand how to support parents through the difficult treatment decisions.
Objective To use observation to understand how decisions about higher-risk treatments, such as biologics, are made in pediatric chronic conditions. Methods Gastroenterology and rheumatology providers ...who prescribe biologics were recruited. Families were recruited when they had an outpatient appointment in which treatment with biologics was likely to be discussed. Consent/assent was obtained to video the visit. Audio of the visits in which a discussion of biologics took place were transcribed and analyzed. Our coding structure was based on prior research, shared decision making (SDM) concepts, and the initial recorded visits. Coded data were analyzed using content analysis and comparison with an existing model of SDM. Results We recorded 21 visits that included discussions of biologics. In most visits, providers initiated the decision-making discussion. Detailed information was typically given about the provider's preferred option with less information about other options. There was minimal elicitation of preferences, treatment goals, or prior knowledge. Few parents or patients spontaneously stated their preferences or concerns. An implicit or explicit treatment recommendation was given in nearly all visits, although rarely requested. In approximately one-third of the visits, the treatment decision was never made explicit, yet steps were taken to implement the provider's preferred treatment. Conclusions We observed limited use of SDM, despite previous research indicating that parents wish to collaborate in decision making. To better achieve SDM in chronic conditions, providers and families need to strive for bidirectional sharing of information and an explicit family role in decision making.
Abstract Purpose To understand adolescents' roles and preferences in chronic disease treatment decisions, using biologic therapy decisions as an example. Methods We conducted semistructured ...interviews with adolescents who have Crohn's disease (n = 7) or juvenile idiopathic arthritis (n = 8). Questions focused on biologic therapy decisions, including who participated, preferred roles, and factors considered in the decision. We used pie charts to help teens describe the division of decisional responsibility. We open-coded the initial interviews to develop a coding structure. Interviews then were coded by two people, with disagreements resolved through discussion. Interviews were analyzed using content analysis. Results Nearly all adolescents participated in the decision about biologic therapy. Roles varied from telling parents about specific symptoms to having the final say in the decision. In addition to discussing their own roles, adolescents identified specific decision-making roles for both parents and physicians. Most factors that influenced adolescents' decision-making related to their quality of life, such as the desire to feel better, concerns about painful injections, and the time needed for treatment. Some adolescents did consider potential side effects and the expected treatment efficacy. Most adolescents were satisfied with how the decision was made, but given a choice would have preferred a different role in the decision. Conclusion Adolescents with chronic disease wish to be involved in treatment decision making, but also seek the involvement of parents and physicians. Parents and providers can assist by providing adolescents with relevant information and by helping teens develop the skills necessary for future medical decision-making.
Introduction
This pilot, randomized controlled trial aimed to evaluate the usability, among adolescents and young adults (AYAs) with ulcerative colitis (UC), of a web‐based tool (‘iBDecide’) designed ...to facilitate shared decision making (SDM).
Methods
AYAs with UC (n = 35) were randomized to intervention (iBDecide, n = 14) and control (n = 12) arms before a scheduled clinic visit. We measured the usability of iBDecide, SDM, preferred decision‐making style, decision conflict and intervention use.
Results
Participants in the intervention group found iBDecide easy to use and agreed that it made them feel ready to participate in decision making and that they would use it to prepare for appointments. There were 130 visits to iBDecide, lasting on average 3 min, 41 s. The medication and nutrition trackers were among the most‐viewed pages. Pages specifically designed to facilitate SDM were viewed only four times. Across groups, too few participants reported making decisions during clinic visits for decision‐related measures to be reported.
Conclusions
This pilot trial provides evidence for the usability of iBDecide and guidance for developing a larger‐scale trial of a combined web‐based and in‐clinic SDM intervention. Overall, iBDecide shows promise in engaging AYAs with UC in SDM and condition management.
Patient or Public Contribution
Patients, specifically AYAs with UC, and healthcare providers were involved in the design of this study's intervention, iBDecide. Additionally, the research team, from study conception to manuscript writing, included a young adult with inflammatory bowel disease.
Clinical Trial Registration: This study was registered at clinicaltrials.gov (NCT04207008).
The aim of the article was to understand adolescents' and parents' decision-making process related to gender-affirming hormone therapy (GAHT).
We conducted qualitative semistructured interviews with ...transgender adolescents who began testosterone for GAHT in the prior year and the parents of such adolescents. Questions focused on decision-making roles, steps in the decision process, and factors considered in the decision. Participants used pie charts to describe the division of responsibility for the decision. All interviews were coded by at least two members of the research team with disagreements resolved through discussion. Thematic analysis was used to analyze the data.
Seventeen adolescents and 13 parents were interviewed (12 dyads). The process of deciding about GAHT involves a series of small conversations, typically with the adolescent advocating to start treatment and the parent feeling hesitant. In most cases, after seeking information from the Internet, healthcare providers and personal contacts move toward acceptance and agree to start treatment. Although adolescents have some short-term concerns, such as about needles, parents’ concerns relate more to long-term risks. Ultimately, for both parents and adolescents, the benefits of treatment outweigh any concerns, and they are in agreement about the goals of personal confidence, comfort in one's body and happiness.
To the extent that the decision about GAHT is a medical decision, the decision process is similar to others. However, decisions about GAHT are much more about gender identity than medical risks, suggesting that interventions based in a medical framework may not aid in supporting decision-making.
Due to the intertwining of medical and social decision-making, new approaches to shared decision-making are likely needed for supporting decisions related to the care of transgender and ...gender-diverse (TGD) adolescents. Prior to developing decision support interventions for TGD youth, a decision support needs assessment must be completed.
Self-identified TGD youth, family members of TGD youth, clinicians caring for this population, and community advocates participated in one of six group level assessments (GLAs). GLA is a structured, participatory qualitative method that engages diverse groups of stakeholders in generating and evaluating ideas on the topic of interest. Upon completion of all GLAs, a survey was developed and distributed to GLA participants inviting them to rank ideas generated during the GLAs.
Six major themes emerged from the GLAs regarding decision support needs, including: improving healthcare provider skills and education, increasing access to support outside the healthcare system, strengthening community and societal support, developing special information resources, supporting youth in leading decision-making about transition, and modifying the healthcare system. In the follow-up survey, improving healthcare provider skills and education was the most commonly chosen top priority.
Participants identified decision support needs for TGD youth and their families that were mostly distinct from traditional decision support approaches. Participants' focus on the need to improve healthcare provider skills and education provides an opportunity to couple gender-focused education with shared decision-making skills, an approach that may be more sustainable than tools for specific decisions.
Background. In the context of pediatric chronic conditions, patients and families are called upon repeatedly to make treatment decisions. However, little is known about how their decision making ...evolves over time. The objective was to understand parents’ processes for treatment decision making in pediatric chronic conditions. Methods. We conducted a qualitative, prospective longitudinal study using recorded clinic visits and individual interviews. After consent was obtained from health care providers, parents, and patients, clinic visits during which treatment decisions were expected to be discussed were video-recorded. Parents then participated in sequential telephone interviews about their decision-making experience. Data were coded by 2 people and analyzed using framework analysis with sequential, time-ordered matrices. Results. 21 families, including 29 parents, participated in video-recording and interviews. We found 3 dominant patterns of decision evolution. Each consisted of a series of decision events, including conversations, disease flares, and researching of treatment options. Within all 3 patterns there were both constant and evolving elements of decision making, such as role perceptions and treatment expectations, respectively. After parents made a treatment decision, they immediately turned to the next decision related to the chronic condition, creating an iterative cycle. Conclusion. In this study, decision making was an iterative process occurring in 3 distinct patterns. Understanding these patterns and the varying elements of parents’ decision processes is an essential step toward developing interventions that are appropriate to the setting and that capitalize on the skills families may develop as they gain experience with a chronic condition. Future research should also consider the role of children and adolescents in this decision process.
Shared decision making (SDM) is recommended for common pediatric conditions; however, there are limited data on measures of SDM in pediatrics. This study adapted the SDM Process scale and examined ...validity and reliability of the scale for attention-deficit/hyperactivity disorder (ADHD) treatment decisions.
Cross-sectional survey of caregivers (n = 498) of children (aged 5–13) diagnosed with ADHD, who had made a decision about ADHD medication in the last 2 years. Surveys included the adapted SDM Process scale (scores range 0–4, higher scores indicate more SDM), decisional conflict, decision regret, and decision involvement. Validity was assessed by testing hypothesized relationships between these constructs. A subset of participants was surveyed a week later to assess retest reliability.
Pediatric Caregiver version of the SDM Process scale (M = 2.8, SD = 1.05) showed no evidence of floor or ceiling effects. The scale was found to be acceptable (<1% missing data) and reliable (intraclass correlation coefficient = 0.74). Scores demonstrated convergent validity, as they were higher for those without decisional conflict than those with decisional conflict (2.93 vs 2.46, P < .001, d = 0.46), and higher for caregivers who stated they made the decision with the provider than those who made the decision themselves (3.0 vs 2.7; P = .003). Higher scores were related to less regret (r = −0.15, P < .001), though the magnitude of the relationship was small.
The adapted Pediatric Caregiver version of the SDM Process scale demonstrated acceptability, validity and reliability in the context of ADHD medication decisions made by caregivers of children 5–13. Scores indicate pediatricians generally involve caregivers in decision making about ADHD medication.
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