TY - JOUR
T1 - A randomized clinical trial of adolescents with HIV/AIDS
T2 - pediatric advance care planning
AU - Lyon, Maureen E.
AU - D’Angelo, Lawrence J.
AU - Dallas, Ronald H.
AU - Hinds, Pamela S.
AU - Garvie, Patricia A.
AU - Wilkins, Megan L.
AU - Garcia, Ana
AU - Briggs, Linda
AU - Flynn, Patricia M.
AU - Rana, Sohail R.
AU - Cheng, Yao Iris
AU - Wang, Jichuan
N1 - Funding Information:
This work was supported by the National Institute of Nursing Research of the National Institutes of Health (NIH), [grant number R01 NR-05]; space for meeting with participants was funded by the National Center for Translational Science [grant number UL 1R000075 Clinical Translational Science Institute at Children's]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
PY - 2017/10/3
Y1 - 2017/10/3
N2 - The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14–21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14–21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
AB - The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14–21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14–21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
KW - Advance care planning
KW - congruence
KW - decision-making
KW - end-of-life
KW - palliative care
KW - pediatric
UR - http://www.scopus.com/inward/record.url?scp=85016509713&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85016509713&partnerID=8YFLogxK
U2 - 10.1080/09540121.2017.1308463
DO - 10.1080/09540121.2017.1308463
M3 - Article
C2 - 28359212
AN - SCOPUS:85016509713
VL - 29
SP - 1287
EP - 1296
JO - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
JF - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
SN - 0954-0121
IS - 10
ER -