J Inherit Metab Dis May 2020 PMID 31883128

Choosing between medical management and liver transplant in urea cycle disorders: A conceptual framework for parental treatment decision-making in rare disease.

Maya T Gerstein, Anne R Markus, Kan Z Gianattasio, Cynthia Le Mons, Janice Bartos, David M Stevens, Nicholas Ah Mew

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Mentions

15
Peak: 7 in Jan 2020
across 3 sources since Jan 2020

Extended reach

22,929
potential audience

Total likes

14

Video views

336

Mentions per month

Jan 2020 – Apr 2025

Where it's discussed

  • X / Twitter11 posts
  • YouTube3 videos
  • News1 articles

AI synopsis

What people are saying

The discussions reflect a strong interest in the framework and factors influencing parental choices, with phrases like 'complex process' and 'tipping point' showing engagement with the content. Words like 'fascinating' and references to 'how parents cope' indicate a tone of curiosity and appreciation for the article's relevance in guiding treatment decisions, demonstrating its significant potential impact on understanding caregiver perspectives.

AgreementModerate agreement

Most discussions acknowledge the importance of the article and its exploration of parental decision-making, showing general support.

InterestHigh interest

The posts demonstrate high interest by highlighting the complexity of treatment choices and emphasizing the novelty of the research.

EngagementHigh engagement

Users actively reference specific aspects like the 'framework', 'tipping point', and the focus on how parents cope, indicating deep engagement.

ImpactHigh impact

The discussions suggest the publication offers meaningful insights into clinical decision processes, emphasizing its potential influence on healthcare approaches.

Abstract in brief

  • Parents of children with Urea Cycle Disorders face a difficult decision between medical management and liver transplantation, as both options have risks but limited comparative evidence.
  • The study uses interviews and focus groups to identify factors influencing treatment choices, such as disease severity, risks, family perceptions, peer experiences, costs, and access to care.
  • A conceptual framework is developed to help healthcare providers understand how these clinical, social, and personal factors interact, ultimately guiding more patient-centered treatment decisions and outcomes.]

Top posts

Most liked on X and Bluesky
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

Our “Something new” is this fascinating #openaccess paper from Maya T. Gerstein et al exploring the factors influencing parental decision making when considering transplant. Decompensation is just one part of this. https://t.co/VBTHVNPB9N https://t.co/GLLfK1aiY3

Feb 2, 2020 · 5 likes · 3 shares · 3,518 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

Our ‘something new‘ was the last article posted in 2019. Gerstein et al looked at how parents cope with the dilemma of whether their child should be managed medically or by liver Tx. They discuss what contributes to the “tipping point” between the two. https://t.co/VBTHVNPB9N https://t.co/mEDvffT9zP

Jan 5, 2020 · 4 likes · 3 shares · 3,518 followers View post →
GW Department of Health Policy & Management
@GWHPM950 · X

When a child is diagnosed with a urea cycle disorder, how do parents choose between medical management and liver transplant? Maya Gerstein of #GWSPH and colleagues present a framework for this complex process in @JIMD_Editors. https://t.co/wjE9clhXir https://t.co/Lp4tAA2rjV

Jan 14, 2020 · 4 likes · 2 shares · 373 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

RT @JIMD_Editors: Our “Something new” is this fascinating #openaccess paper from Maya T. Gerstein et al exploring the factors influencing…

Feb 2, 2020 · 3 shares · 3,518 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

RT @GWHPM950: When a child is diagnosed with a urea cycle disorder, how do parents choose between medical management and liver transplant?…

Jan 14, 2020 · 2 shares · 3,518 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

RT @JIMD_Editors: Our ‘something new‘ was the last article posted in 2019. Gerstein et al looked at how parents cope with the dilemma of wh…

Jan 5, 2020 · 3 shares · 3,518 followers View post →

All mentions

The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

RT @JIMD_Editors: Our “Something new” is this fascinating #openaccess paper from Maya T. Gerstein et al exploring the factors influencing…

Feb 2, 2020 · 3 shares · 3,518 followers View post →
BIMDG
@BIMDG · X

RT @JIMD_Editors: Our “Something new” is this fascinating #openaccess paper from Maya T. Gerstein et al exploring the factors influencing…

Feb 2, 2020 · 3 shares · 1,214 followers View post →
Susan Berry
@BerryS730 · X

RT @JIMD_Editors: Our “Something new” is this fascinating #openaccess paper from Maya T. Gerstein et al exploring the factors influencing…

Feb 2, 2020 · 3 shares · 958 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

Our “Something new” is this fascinating #openaccess paper from Maya T. Gerstein et al exploring the factors influencing parental decision making when considering transplant. Decompensation is just one part of this. https://t.co/VBTHVNPB9N https://t.co/GLLfK1aiY3

Feb 2, 2020 · 5 likes · 3 shares · 3,518 followers View post →
Prasad
@IamAPPrasad · X

RT @GWHPM950: When a child is diagnosed with a urea cycle disorder, how do parents choose between medical management and liver transplant?…

Jan 14, 2020 · 2 shares · 44 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

RT @GWHPM950: When a child is diagnosed with a urea cycle disorder, how do parents choose between medical management and liver transplant?…

Jan 14, 2020 · 2 shares · 3,518 followers View post →
GW Department of Health Policy & Management
@GWHPM950 · X

When a child is diagnosed with a urea cycle disorder, how do parents choose between medical management and liver transplant? Maya Gerstein of #GWSPH and colleagues present a framework for this complex process in @JIMD_Editors. https://t.co/wjE9clhXir https://t.co/Lp4tAA2rjV

Jan 14, 2020 · 4 likes · 2 shares · 373 followers View post →
SIMD
@SIMDtweets · X

RT @JIMD_Editors: Our ‘something new‘ was the last article posted in 2019. Gerstein et al looked at how parents cope with the dilemma of wh…

Jan 7, 2020 · 3 shares · 1,131 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

RT @JIMD_Editors: Our ‘something new‘ was the last article posted in 2019. Gerstein et al looked at how parents cope with the dilemma of wh…

Jan 5, 2020 · 3 shares · 3,518 followers View post →
BIMDG
@BIMDG · X

RT @JIMD_Editors: Our ‘something new‘ was the last article posted in 2019. Gerstein et al looked at how parents cope with the dilemma of wh…

Jan 5, 2020 · 3 shares · 1,214 followers View post →
The Journal of Inherited Metabolic Disease
@JIMD_Editors · X

Our ‘something new‘ was the last article posted in 2019. Gerstein et al looked at how parents cope with the dilemma of whether their child should be managed medically or by liver Tx. They discuss what contributes to the “tipping point” between the two. https://t.co/VBTHVNPB9N https://t.co/mEDvffT9zP

Jan 5, 2020 · 4 likes · 3 shares · 3,518 followers View post →
Essential Metals in Health Printed | PDF | Coordination Complex ...
News

10.1002/ams2.334. (2007) 131–147, https://doi.org/10.1016/j.taap.2007.03.001 ... Smollin, Poisoning and Drug Overdose, eighth ed., McGraw, 2022. jimd.12488.

Dec 11, 2025 View →