When Adolescent and Parents Disagree on Medical Plan, Who Gets to Decide?

Hopkins, Kali A.; Ott, Mary A.; Salih, Zeynep N. Inanc; Bosslet, Gabriel T.; Lantos, John D.

doi:10.1542/peds.2019-0291

Cited by 5 publications

(2 citation statements)

References 32 publications

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“…The SMA model is designed to allow more time for patient education regarding disease prevention and management using a multidisciplinary interprofessional approach which may encourage the development of selfcare skills (Wadsworth et al, 2019). While several different standardized diabetes SMA model programs have been developed, not all of them consider the unique characteristics of the population being served (Rashid et al, 2017;Hopkins DECIDE Program, 2019;Self-Management Resource Center, 2020). In general, the group-care model has shown positive effects on T2DM management as evidenced by improved biophysical health measures; however, the magnitude of these improvements show significant inter-study heterogeneity and may be greatly influenced by program design, provider experience, and population characteristics, with those more closely tailored to the population audience being more successful (Housden et al, 2013;Edelman et al, 2015;Watts et al, 2015;Wadsworth et al, 2019).…”

Section: Type 2 Diabetes In African Americansmentioning

confidence: 99%

Impact of culturally tailored shared medical appointments on diabetes self-care ability and knowledge in African Americans

Reddick¹,

Gray²

2023

Prim Health Care Res Dev

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Background: Type 2 diabetes mellitus (T2DM) continues to disproportionately affect African Americans, significantly impacting morbidity and mortality. Research suggests that addressing barriers that stem from socioeconomic circumstances, systemic inequalities, biological factors, and cultural factors may positively influence biometric indicators of health and diabetes control. Objective: The aim of this study was to evaluate a diabetes shared medical appointment (SMA) model program that has been culturally tailored to address the unique social determinants of health barriers faced by an inner city African American population in Norfolk, Virginia. Methods: A pilot study using a within-group pretest–posttest design was conducted. Information was collected from self-report surveys that included the Modified Michigan Diabetes Knowledge Test, the Diabetes Self-Efficacy Scale, and researcher generated surveys before and after a single-session three-hour SMA program. Key Results: The program increased perceived diabetes self-care confidence and perceived overall diabetes knowledge levels. Increases in knowledge scores were seen but not statistically significant. Participants reported high levels of satisfaction with the program model. Discussion: Findings indicate that this model is an effective and engaging method of improving self-care ability and diabetes disease management knowledge among African Americans. Addressing unique circumstances and barriers experienced by this population may be more effective than usual traditional care approaches.

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Section: Type 2 Diabetes In African Americansmentioning

confidence: 99%

Impact of culturally tailored shared medical appointments on diabetes self-care ability and knowledge in African Americans

Reddick¹,

Gray²

2023

Prim Health Care Res Dev

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“…Understanding the preferences and values of caregivers and patients directly affected by rare diseases is essential to improving patient-centered decision making in many contexts [5,6]. Caregiver and patient preferences can inform treatment decisions when clinical evidence or therapeutic options are limited (as is often the case for rare diseases) [7].…”

Section: Introductionmentioning

confidence: 99%

A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy

Crossnohere

Fischer

Vroom

et al. 2022

Patient

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Background and Objectives Caregivers routinely inform medical and regulatory decision making in rare pediatric diseases. While differences in treatment preferences across caregivers and patients have been observed for Duchenne muscular dystrophy, this evidence was limited by small samples of patients and results were confounded by patient age and disease progression. We tested caregiver and patient preference concordance for treating Duchenne. Methods Preferences and demographic/clinical information from 115 caregivers and 107 patients were collected in an international study (response = 80%) using a previously developed discrete-choice experiment consisting of 12 experimentally controlled choice tasks. Each task presented two profiles that varied across four attributes: disease progression, drug failure probability, kidney damage risk, and fracture risk. Caregivers and patients were matched 1:1 based on patient age. We tested for concordance across each task and by comparing caregivers' and patients' maximum acceptable risk of drug failure, kidney damage, and fracture for a slowing of disease progression. ResultsThe final analysis included 77 caregivers and 77 patients. No differences were observed in nationality (p = 0.969), disease stage (p = 0.180), or demographic/clinical factors (p = 0.093-0.857); however, patients were more optimistic (p = 0.030). Caregivers and patients chose similarly across tasks (p = 0.101-0.993). To slow disease progression by 1 year, caregivers and patients would tolerate a 9% and 11% increase in drug failure probability, respectively (p = 0.267). Alternatively, they would accept a 3% and 4% increase in the risk of kidney damage (p = 0.719) or a 15% and 20% increase in the risk of fracture (p = 0.534). Conclusions Caregivers and patients had concordant preferences for treating Duchenne. Providers and regulators can trust both caregiver and patient report of preferences to inform medical decision making.

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Overview, Management Strategy of Prolonged and Long-Term Mechanical Ventilation in Children

Perez

2024

Prolonged and Long-Term Mechanical Ventilation in Children

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When Adolescent and Parents Disagree on Medical Plan, Who Gets to Decide?

Abstract: An adolescent with DMD wants a life-extending tracheostomy, whereas his parents do not want this for him.

Cited by 5 publications

References 32 publications

Impact of culturally tailored shared medical appointments on diabetes self-care ability and knowledge in African Americans

Impact of culturally tailored shared medical appointments on diabetes self-care ability and knowledge in African Americans

A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy

Overview, Management Strategy of Prolonged and Long-Term Mechanical Ventilation in Children

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