scholarly journals Engaging caregivers and providers of children with sickle cell anemia in shared decision-making for hydroxyurea (ENGAGE HU): a study protocol for a randomized controlled trial (Preprint)

2021 ◽  
Author(s):  
Anna Marie Hood ◽  
Heather Strong ◽  
Cara Nwankwo ◽  
Yolanda Johnson ◽  
James Peugh ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Controlled Trial ◽  
Quality Care ◽  
Shared Decision ◽  
Number Of Children ◽  
Blood Disorder

UNSTRUCTURED Introduction: Sickle cell anemia (SCA) is a genetic blood disorder that places children at risk for serious medical complications, early morbidity and mortality, and high healthcare utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children less than five years of age. Evidence-based guidelines recommend using a shared decision-making approach to offer hydroxyurea to children with SCA (HbSS or HbS/β0thalassemia) as early as nine months of age. However, uptake remains suboptimal, likely because caregivers lack information about hydroxyurea and have concerns about its safety and potential long-term side effects. Moreover, clinicians do not routinely receive training or the tools to facilitate a shared discussion with caregivers, especially one that provides medical evidence and considers caregivers’ preferences and values. Methods and Analysis: We designed our study to compare the effectiveness of two methods for disseminating hydroxyurea guidelines to facilitate shared decision-making: 1) a clinician pocket guide (i.e., usual care), and 2) a clinician hydroxyurea shared decision-making toolkit (H-SDM toolkit). Our primary outcomes are caregiver reports of decisional uncertainty and knowledge of hydroxyurea. The study also assesses the number of children (aged 0 – 5 years) offered and prescribed hydroxyurea and resultant health outcomes. The long-term objective of this research is to improve the quality of care for children with SCA. Using multicomponent dissemination methods developed in partnership with key stakeholders and designed to address barriers to high-quality care, caregivers of patients with SCA have the opportunity to make informed and shared decisions about their health. Trial registration: ClinicalTrials.gov: NCT03442114. Registered February 28th, 2018.

scholarly journals Shared decision making for hydroxyurea treatment initiation in children with sickle cell anemia

2014 ◽  
Vol 62 (2) ◽  
pp. 184-185 ◽  
Author(s):  
Lori E. Crosby ◽  
Lisa M. Shook ◽  
Russell E. Ware ◽  
William B. Brinkman
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Treatment Initiation ◽  
Shared Decision ◽  
Hydroxyurea Treatment

The impact of patient narratives on medical students’ perceptions of shared decision making: A randomized controlled trial

2020 ◽  
Author(s):  
Martina Bientzle ◽  
Marie Eggeling ◽  
Simone Korger ◽  
Joachim Kimmerle
Keyword(s):  
Decision Making ◽  
Medical Students ◽  
Shared Decision Making ◽  
Medical Training ◽  
Controlled Trial ◽  
Future Research ◽  
Shared Decision ◽  
Randomized Controlled ◽  
Information Text ◽  
The Impact

BACKGROUND: Successful shared decision making (SDM) in clinical practice requires that future clinicians learn to appreciate the value of patient participation as early as in their medical training. Narratives, such as patient testimonials, have been successfully used to support patients’ decision-making process. Previous research suggests that narratives may also be used for increasing clinicians’ empathy and responsiveness in medical consultations. However, so far, no studies have investigated the benefits of narratives for conveying the relevance of SDM to medical students.METHODS: In this randomized controlled experiment, N = 167 medical students were put into a scenario where they prepared for medical consultation with a patient having Parkinson disease. After receiving general information, participants read either a narrative patient testimonial or a fact-based information text. We measured their perceptions of SDM, their control preferences (i.e., their priorities as to who should make the decision), and the time they intended to spend for the consultation.RESULTS: Participants in the narrative patient testimonial condition referred more strongly to the patient as the one who should make decisions than participants who read the information text. Participants who read the patient narrative also considered SDM in situations with more than one treatment option to be more important than participants in the information text condition. There were no group differences regarding their control preferences. Participants who read the patient testimonial indicated that they would schedule more time for the consultation.CONCLUSIONS: These findings show that narratives can potentially be useful for imparting the relevance of SDM and patient-centered values to medical students. We discuss possible causes of this effect and implications for training and future research.

Preparing Patients with Early Stage Prostate Cancer to Participate in Clinical Appointments Using a Shared Decision Making Training Video

2021 ◽  
pp. 0272989X2110285
Author(s):  
Karen Scherr ◽  
Rebecca K. Delaney ◽  
Peter Ubel ◽  
Valerie C. Kahn ◽  
Daniel Hamstra ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Early Stage ◽  
Controlled Trial ◽  
Treatment Decision ◽  
Shared Decision ◽  
Plain Language ◽  
Training Video ◽  
Video Group

Background Rates of shared decision making (SDM) are relatively low in early stage prostate cancer decisions, as patients’ values are not well integrated into a preference-sensitive treatment decision. The study objectives were to develop a SDM training video, measure usability and satisfaction, and determine the effect of the intervention on preparing patients to participate in clinical appointments. Methods A randomized controlled trial was conducted to compare a plain-language decision aid (DA) to the DA plus a patient SDM training video. Patients with early stage prostate cancer completed survey measures at baseline and after reviewing the intervention materials. Survey items assessed patients’ knowledge, beliefs related to SDM, and perceived readiness/intention to participate in their upcoming clinical appointment. Results Of those randomized to the DA + SDM video group, most participants (91%) watched the video and 93% would recommend the video to others. Participants in the DA + SDM video group, compared to the DA-only group, reported an increased desire to participate in the decision (mean = 3.65 v. 3.39, P < 0.001), less decision urgency (mean = 2.82 v. 3.39, P < 0.001), and improved self-efficacy for communicating with physicians (mean = 4.69 v. 4.50, P = 0.05). These participants also reported increased intentions to seek a referral from a radiation oncologist (73% v. 51%, P = 0.004), to take notes (mean = 3.23 v. 2.86, P = 0.004), and to record their upcoming appointments (mean = 1.79 v. 1.43, P = 0.008). Conclusions A novel SDM training video was accepted by patients and changed several measures associated with SDM. This may be a scalable, cost-effective way to prepare patients with early stage prostate cancer to participate in their clinical appointments. [Box: see text]

Shared Decision Making and Long-Term Outcome in Schizophrenia Treatment

2007 ◽  
Vol 68 (07) ◽  
pp. 992-997 ◽  
Author(s):  
Johannes Hamann ◽  
Rudolf Cohen ◽  
Stefan Leucht ◽  
Raymonde Busch ◽  
Werner Kissling
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Shared Decision ◽  
Term Outcome ◽  
Long Term Outcome
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