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.
- advance care planning
- chronic illness
- palliative care
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Contributors MEL is the principal investigator and together with JW conceived and designed the study, analysed and interpreted the data and drafted the article. RHD contributed to the concept, design, analyses, collection of the data, verification of the data and interpretation of the data for this manuscript and approved the final manuscript as submitted. PAG, MLW and AG contributed to the collection of the data, interpretation of the data, reviewed and revised the final manuscript and approved the final manuscript as submitted. JW and YIC analysed and verified all of data. YIC prepared all tables and figures and contributed to the interpretation of results, verification of all data and revising the manuscript. All authors have read and gave final approval of the version to be published.
Funding Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR012711-06 from the National Institute of Nursing Research (NINR) at the National Institutes of Health (NIH). Space was provided through the NIH National Center for Advancing Translational Sciences Clinical Training Science Institute at Children’s National UL1TR0000075. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NINR or NIH.
Competing interests None declared.
Patient consent Obtained.
Ethics approval This study was approved by the Children’s National Institutional Review Board, IRBear no 1345, originally IRB no 4972. Children’s National was the coordinating centre. The respective institutional review board of each of the other five participating hospitals also approved the study: St Jude Children’s Research Hospital, Children’s Diagnostic & Treatment Center, Howard University Hospital, Johns Hopkins University and the University of Miami Miller School of Medicine.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Original survey data (frequency distributions) for the adolescent and family surveys are available upon request from Dr MEL at firstname.lastname@example.org.