Paediatric advance care planning survey: A cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

Maureen E. Lyon, Ronald H. Dallas, Patricia A. Garvie, Megan L. Wilkins, Ana Garcia, Yao Iris Cheng, Jichuan Wang

Research output: Contribution to journalArticle

8 Scopus citations

Abstract

Objectives To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. Methods A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised. Results Adolescents' mean age was 18 years (range ≥14-<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92% believed in completing an advance directive; 85% preferred to die at home;88% knowing how to say good bye; 71% being off machines that extend life and 77% dying a natural death. Best timing for end-of-life (EOL) decisions was while healthy (38%), when first diagnosed (17%), when first sick from a life-threatening illness (4%), when first hospitalised (8%), if dying (4%) and all of the above (19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in that being free from pain (PABAK=0.83), and understanding your treatment choices (PABAK=0.92) were very important or important. There was discordance about being off machines that extend life (PABAK=0.08) and when is the best time to bring up EOL decisions (PABAK=0.32). Conclusions Areas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth's EOL wishes. Trial registration number NCT01289444; Results.

Original languageEnglish (US)
Article numbere22
JournalBMJ Supportive and Palliative Care
Volume9
Issue number1
DOIs
StatePublished - Mar 1 2019

Keywords

  • adolescent
  • advance care planning
  • chronic illness
  • end-of-life
  • palliative care

ASJC Scopus subject areas

  • Medicine (miscellaneous)
  • Oncology(nursing)
  • Medical–Surgical

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