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

BMJ Support Palliat Care. 2019 Mar;9(1):e22. doi: 10.1136/bmjspcare-2016-001224. Epub 2017 Sep 21.


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.

Keywords: adolescent; advance care planning; chronic illness; end-of-life; palliative care.

MeSH terms

  • Adolescent
  • Advance Care Planning*
  • Advance Directives / psychology*
  • Communication
  • Cross-Sectional Studies
  • Decision Making
  • Dissent and Disputes
  • Family / psychology*
  • Female
  • HIV
  • HIV Infections / psychology*
  • HIV Infections / therapy
  • Humans
  • Male
  • Parent-Child Relations
  • Surveys and Questionnaires
  • Terminal Care / psychology*
  • Young Adult

Associated data