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18 results

  • Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience

  • Melissa K. Cousino, Lindsay J. May, Lauren Smyth, Melissa McQueen, Katherine Thompson, Tiffany Hunter, Courtney Ventresco, Katrina Fields, Jenna Murray, Desiree S. Machado, Muhammad Shezad, Farhan Zafar, David N. Rosenthal, Angela Lorts, Elizabeth D. Blume
  • Journal:
    Cardiology in the Young / Volume 33 / Issue 11 / November 2023
    Published online by Cambridge University Press:
    19 January 2023, pp. 2258-2266
  • Background:

    Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality and can be used to inform treatment. Despite the widescale use of PROs in adult cardiology, they are underutilised in paediatric cardiac care. This study describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population.

    Methods:

    The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) is a collaborative learning network comprised of 55 centres focused on improving clinical outcomes and the patient/family experience for children with heart failure and those supported by ventricular assist devices. The development of ACTION’s PRO programme via engagement with patient and parent stakeholders is described. Pilot feasibility, patient/parent and clinician feedback, and initial PRO findings of patients and families receiving paediatric ventricular assist support across six centres are detailed.

    Results:

    Thirty of the thirty-five eligible patients (85.7%) were enrolled in the PRO programme during the pilot study period. Clinicians and participating patients/parents reported positive experiences with the PRO pilot programme. The most common symptoms reported by patients/parents in the first month post-implant period included limitations in activities, dressing change distress, and post-operative pain. Poor sleep, dressing change distress, sadness, and fatigue were the most common symptoms endorsed >30 days post-implant. Parental sadness and worry were notable throughout the entirety of the post-implant experience.

    Conclusions:

    This multi-center ACTION learning network-based PRO programme demonstrated initial success in this six-center pilot study experience and yields important next steps for larger-scale PRO collection, research, and clinical intervention.

Slave Portraiture in the Atlantic World
  • Edited by Agnes Lugo-Ortiz, Angela Rosenthal
  • Published online:
    05 October 2013
    Print publication:
    30 September 2013
  • Slave Portraiture in the Atlantic World is the first book to focus on the individualized portrayal of enslaved people from the time of Europe's full engagement with plantation slavery in the late sixteenth century to its final official abolition in Brazil in 1888. While this period saw the emergence of portraiture as a major field of representation in Western art, 'slave' and 'portraiture' as categories appear to be mutually exclusive. On the one hand, the logic of chattel slavery sought to render the slave's body as an instrument for production, as the site of a non-subject. Portraiture, on the contrary, privileged the face as the primary visual matrix for the representation of a distinct individuality. Essays address this apparent paradox of 'slave portraits' from a variety of interdisciplinary perspectives, probing the historical conditions that made the creation of such rare and enigmatic objects possible and exploring their implications for a more complex understanding of power relations under slavery.