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

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 Effects of the COVID-19 Pandemic on Caregivers of Young Children with Sickle Cell Disease Enrolled in the Engage-HU Trial

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 1891-1891
Author(s):  
Anna M Hood ◽  
Aimee K Hildenbrand ◽  
Joanna Rebitski ◽  
Jasmine Stallworth ◽  
Yolanda Johnson ◽  
...  
Keyword(s):  
Decision Making ◽  
Sickle Cell Disease ◽  
Shared Decision Making ◽  
Sickle Cell ◽  
Research Funding ◽  
The United States ◽  
Data Safety Monitoring Board ◽  
Shared Decision ◽  
Cell Disease ◽  
Grant Funding

Abstract Background: Hydroxyurea (HU) is the primary medication used to prevent the significant medical and neurologic morbidities of pediatric sickle cell disease (SCD; HbSS or HbSB0 thalassemia). Despite the benefits of HU, it remains under-utilized likely due to lack of clinician knowledge/training and negative caregiver perceptions. Thus, we developed the Engage-HU randomized controlled trial (NCT03442114) as a novel approach to address HU utilization barriers. Engage-HU is designed to assess how clinicians can engage caregivers in a shared discussion that considers their values, preferences, and scientific evidence about HU. The COVID-19 pandemic has resulted in significant changes to healthcare delivery for children with SCD, as they are at increased risk of severe illness from COVID-19 infection. Given their risk status, it was recommended that patients with SCD complete telehealth visits when possible. Some families also chose to delay care because they feared their child would get infected at hospitals/healthcare clinics that care for COVID-19 positive patients. Since the lives of all families enrolled in the Engage-HU trial have been affected to some extent, we incorporated measures to capture the impact of the COVID-19 pandemic and the usability of telemedicine implementation and services. Methods: Engage-HU is a randomized control trial comparing two dissemination methods for clinicians to facilitate shared decision-making with caregivers of young children with SCD. Study outcomes include caregiver confidence in decision-making and perceptions of experiencing shared decision-making as well as HU uptake and child health outcomes. Eligible children are 0 to 5 years, candidates for HU, and their caregiver has not decided about HU in the past 3 months. The trial is being conducted at 9 sites in the United States and uses a unidirectional crossover design. The primary endpoints are caregiver decisional uncertainty and caregiver perception of shared decision-making measured using validated tools. Data will be analyzed using the intent-to-treat principle, and all participants will remain in the arm to which they were randomized. A multiple group comparison analysis will be performed to assess significant response variable differences by group randomization. The Engage-HU study aims to recruit 174 caregivers who are considering initiating HU. The trial is being conducted at 9 sites in the United States. Data collection is ongoing, and 160 caregiver-participants have been enrolled to date. Since May 2020, caregiver-participants have completed the COVID-19 Exposure and Family Impact Scales (CEFIS), which contain 2 subscales (exposure to potentially traumatic aspects of the pandemic, impact on families), and the COVID-19 telemedicine use survey during a study visit. Results: Currently, 8 of the 9 sites have collected data from 48 caregivers (93.8% mothers), most of whom (93.8%) identify as African American/Black (see Figure 1). Correlations indicated that older caregivers experienced greater exposure (Mean = 7.0, SD = 4.1, range = 1-19) to potentially traumatic aspects of the pandemic (r = .31, p = .04). Distress related to COVID-19 varied widely across the sample, for both caregivers (Mean = 5.9, SD = 2.9, range = 1-10) and children (Mean = 4.1, SD = 3.4, range = 1-10). Scores on the telemedicine usability survey were generally high, indicating that caregivers are happy with the quality of care delivered via telehealth. However, caregivers (r = .30, p = .09) and children (r = .32, p = .07) experiencing more pandemic-related distress reported less satisfaction with telehealth. Conclusion: Although Engage-HU has resumed research operations, recruitment has not reached pre-pandemic targets, as fewer eligible patients are scheduled for routine care visits at SCD clinics. Our preliminary analyses suggest a significant continued impact of the pandemic on families and general satisfaction with the quality of healthcare delivered via telemedicine. These findings indicate that targeted screenings to identify and intervene for those who demonstrate more COVID-19 pandemic-related distress are needed. Figure 1 Figure 1. Disclosures Quinn: Forma Therapeutics: Consultancy; Aruvant: Research Funding; Novo Nordisk: Consultancy; Emmaus Medical: Research Funding. Yates: Agios Pharmaceuticals: Current Employment. Badawy: Sanofi Genzyme: Consultancy; Vertex Pharmaceuticals Inc: Consultancy; Bluebird Bio Inc: Consultancy. Thompson: bluebird bio, Inc.: Consultancy, Research Funding; Baxalta: Research Funding; Biomarin: Research Funding; Celgene/BMS: Consultancy, Research Funding; CRISPR Therapeutics: Research Funding; Vertex: Research Funding; Editas: Research Funding; Graphite Bio: Research Funding; Novartis: Research Funding; Agios: Consultancy; Beam: Consultancy; Global Blood Therapeutics: Current equity holder in publicly-traded company. Smith-Whitley: Global Blood Therapeutics: Current Employment. King: National Cancer Institute: Research Funding; National Heart, Lung, and Blood Institute: Research Funding; Health Resources and Services Administration: Research Funding; Global Blood Therapeutics: Research Funding. Meier: CVS Caremark: Consultancy; Forma Therapeutic: Membership on an entity's Board of Directors or advisory committees; NovoNordisk: Membership on an entity's Board of Directors or advisory committees; Novartis,: Other: Data Safety Monitoring Board membership; NHLBI: Other: Data Safety Monitoring Board membership; Global Blood Therapeutics: Other: Steering Committee membership, grant funding; CDC,: Other: grant funding; Indiana Department of Health: Other: grant funding . Tubman: Global Blood Therapeutics: Consultancy, Research Funding; Novartis Pharmaceuticals: Honoraria, Research Funding; Forma Pharmaceuticals: Consultancy; Perkin Elmer: Honoraria. Crosby: Forma Therapeutics: Honoraria; PCORI: Research Funding; HRSA: Research Funding; Global Blood Therapeutics Panel: Honoraria; Children's Hospital of Philadelphia: Honoraria; Professional Resource Exchange: Patents & Royalties: $30-$60 every other year; SCDAA: Honoraria; NHLBI: Other: Payment for review of LRP Proposals, Research Funding. OffLabel Disclosure: Hydroxyurea has been FDA approved for the treatment of sickle cell disease for patients ages 2 years and above but NHLBI and ASH Guidelines recommend it be offered to children as young as age 9 months.

Shared decision-making in ovarian cancer.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 5549-5549 ◽  
Author(s):  
Lari B. Wenzel ◽  
Dana B Mukamel ◽  
Kathryn Osann ◽  
Lisa Sparks ◽  
Laura Jean Havrilesky ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Decision Making ◽  
Shared Decision Making ◽  
Decision Aid ◽  
Treatment Initiation ◽  
Treatment Decision ◽  
Shared Decision ◽  
Decisional Regret ◽  
Over Time

5549 Background: The value of shared decision-making in ovarian cancer is relatively unexplored. The goal of this study was to test a new decision aid, Patient Centered Outcome Aid (PCOA), that facilitates shared decision-making and helps ovarian cancer patients assimilate information and identify quality of life (QOL), toxicity and survival trade-offs between IP/IV therapy and IV therapy alone, based on their preferences and personal clinical characteristics. Methods: Participants were randomized to either PCOA (N=64) or usual care (N=59). Patient characteristics, QOL and shared decision-making data were collected at baseline and treatment initiation. Primary outcomes included satisfaction with treatment decision and decisional regret. Comparisons were made using t-tests and multivariate methods, adjusting for patient covariates. Multivariate linear models were used to investigate predictors of the primary outcomes. Results: Although satisfaction and decisional regret did not differ significantly by arm at any time point, the majority of PCOA patients indicated that the aid helped them understand treatment options and side effects. Notably, low shared decision-making and low QOL, were significant predictors of low satisfaction at treatment initiation (multiple r=0.76), six months (multiple r=0.48) and nine months (r=0.58). They were also significant predictors of decisional regret (multiple r=0.48 and 0.36 at 6 and 9 months). Patient covariates including age, stage, treatment and neoadjuvant status were not associated with differences in satisfaction or decisional regret. Conclusions: There were no clinically meaningful differences in satisfaction with the treatment decision, or decisional regret between the study arms. The absence of a difference may reflect the high degree of shared decision-making in both arms and greater disease severity in PCOA patients, who were more likely to report low baseline QOL and declining QOL over time. Both shared decision-making and quality of life were robust, independent predictors of satisfaction with the treatment decision over time. This implies that women who perceive themselves as less engaged in the decision process, and report poor QOL may benefit from a decision aid, in addition to physician counseling. Clinical trial information: NCT02259699.

The Role of Shared Decision-Making in Audiologic Rehabilitation

2014 ◽  
Vol 21 (1) ◽  
pp. 15-23 ◽  
Author(s):  
Helen Pryce ◽  
Amanda Hall
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Behavior Changes ◽  
Shared Decision ◽  
Patient Centered ◽  
Treatment Information ◽  
Centered Care ◽  
Potential Risks ◽  
Audiologic Rehabilitation

Shared decision-making (SDM), a component of patient-centered care, is the process in which the clinician and patient both participate in decision-making about treatment; information is shared between the parties and both agree with the decision. Shared decision-making is appropriate for health care conditions in which there is more than one evidence-based treatment or management option that have different benefits and risks. The patient's involvement ensures that the decisions regarding treatment are sensitive to the patient's values and preferences. Audiologic rehabilitation requires substantial behavior changes on the part of patients and includes benefits to their communication as well as compromises and potential risks. This article identifies the importance of shared decision-making in audiologic rehabilitation and the changes required to implement it effectively.

On the evaluation of shared decision making: The Decision Evaluation Scales

2004 ◽  
Author(s):  
P. F. M. Stalmeier ◽  
M. S. Roosmalen ◽  
L. C. G. Josette Verhoef ◽  
E. H. M. Hoekstra-Weebers ◽  
J. C. Oosterwijk ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Shared Decision

Shared Decision Making to Increase Family Involvement in the Care of Consumers With SMI

2013 ◽  
Author(s):  
Shirley M. Glynn ◽  
Lisa Dixon ◽  
Amy Cohen ◽  
Amy Drapalski ◽  
Deborah Medoff ◽  
...  
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Family Involvement ◽  
Shared Decision
Sign in / Sign up

Export Citation Format

Share Document