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Adolescents with Rett syndrome at critical care pathway junctures: Examining clinicians' decision to initiate

Mary Brigid Quirke1, Denise Alexander1, Lorna Cassidy1

  • 1School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin, 4, Ireland.

European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society
|March 14, 2024
PubMed

Insights

Parental agreement, family support, and proximity to specialized care significantly influence decisions about long-term ventilation for adolescents with Rett Syndrome (RTT). Effective communication is key for ethical decision-making.

Area of Science:

  • Pediatric Bioethics
  • Clinical Decision-Making
  • Rare Disease Management

Background:

  • Initiating invasive long-term ventilation (I-LTV) for adolescents with Rett Syndrome (RTT) presents complex bioethical challenges.
  • Enhancing patient and family participation requires transparency in decision-making factors.

Purpose of the Study:

  • To identify key factors influencing clinicians' decisions to support I-LTV initiation in adolescents with RTT.

Main Methods:

  • An anonymous, international, online vignette-based factorial survey was administered to pediatric clinicians.
  • Data from 504 RTT vignettes completed by 246 clinicians were analyzed using mixed-effects regression modeling.

Main Results:

  • Parental agreement with I-LTV initiation was a primary driver.
  • The family's support network and proximity to a tertiary care center were also significant factors.
  • Clinician comments highlighted the importance of family support and ongoing communication.

Conclusions:

  • Improving communication and consensus-building strategies with families is crucial for ethical decision-making.
  • Respecting the rights of individuals with disabilities and involving adolescents in care decisions are paramount.
  • Sensitivity and reflective practice in decision-making processes support positive outcomes for RTT patients and families.
Abstract

Keywords:
Clinical decision-makingIntensive care unitsMechanical ventilationModelsPaediatricRett syndromeSurvey

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