BackgroundFew studies have tested whether ACP can sustain congruence in treatment preferences over time.

AimTo test the efficacy of an ACP intervention to sustain congruence in treatment preferences at 3-month post-intervention.Hypothesis: Compared to an active control, FAmily CEntered (FACE) ACP will relieve psychological suffering by increasing congruence in treatment preferences between teens with HIV/AIDS and their surrogate decision-makers.

MethodsParticipants were recruited from 6 urban, hospital-based clinics in the United States.107 adolescent/surrogate dyads were randomized to either the 60 minute 3-session: Family-Centered (FACE) ACP Intervention [Session 1. Lyon ACP Survey©; Session 2. Respecting Choices Interview®; Session 3. Five Wishes©]; or Healthy Living Control (HLC) [Session 1. Developmental History; Session 2. Safety Tips/AAP’s Bright Future; Session 3. Nutrition Tips].Statement of Treatment Preferences (SoTP; Hammes & Briggs) administered to patient and surrogate together (FACE arm) or separately (HLC arm) by trained research assistant at Time 1 (Session 2) and separately by a trained research assistant at Time 2 (3-month post-intervention follow-up).SToP examines three end of life situations with choices to continue all treatments, discontinue treatments or don’t know.Figure 1. The prevalence adjusted bias adjusted Kappa (PABAK) that adjusts the kappa for imbalances caused by differences in the prevalence and bias was used to measure agreement to continue all treatments, discontinue treatment or don’t know. PABAK was calculated using the following formula: PABAK=(k*po-1)/(k-1) where k=3 for this study; po is the overall observed proportion of agreement. PABAK difference between intervention groups was tested using bootstrap technique.Figure 2. Percentage of dyads agreeing to limit treatment is reported by Intervention group (2) and at by Situation (3) at Session 2 and 3-month post intervention follow-up. Preference agreement was tested using Chi-square statistic with Fisher’s exact P-value.

Results Table 1. Adolescent Demographics Table 2. HIV Characteristics

DiscussioDiscussion

Congruence in treatment preferences was consistently higher for FACE intervention dyads than for HLC dyads. However, statistically significant differences between groups in congruence diminished over time, indicating a short-term effect.

FACE dyads were statistically more likely than HLC dyads to agree to limit treatments in Situations 1 and 3 at Session 2.

FACE dyads were still more likely than HLC dyads to limit treatments in all three situations at 3-month post-intervention follow-up, but the differences between groups were only statistically significant in Situation 2.

More FACE than HLC adolescents at both Session 2 and 3-month follow-up agreed to give their surrogate leeway to use his/her judgment when making end of life decisions, rather than strictly following the youth’s wishes. Although not statistically significant, this finding may be clinically meaningful.

Conclusions First Randomized Controlled Clinical Trial to examine longitudinal congruence in

treatment preferences, to our knowledge. Prognostic information is not necessary for ACP conversations to occur. Impoverished, African-American families are willing and able to participate in ACP. Booster sessions may be needed to sustain congruence over time. FACE dyads increased congruence to statistical significance for Situation 2 suggesting

ongoing conversations may have occurred about physical incapacitation. Certified/trained facilitators, who were not physicians, demonstrated efficacy to

conduct these conversations , resulting in significant congruence for families.

Acknowledgements National Institute of Nursing Research/National Institutes of Health Award Number R01NR01271; NIH National Center for Advancing Translational Sciences CTSI-CN UL1TR000075; This content is solely the responsibility of the authors and does not necessarily represent the official views of the NINR or the NIH. We also thank our families and adolescents who gave generously of their time and our study sites: Children’s Diagnostic & Treatment Center Children’s National Health System Howard University Hospital Johns Hopkins University St. Jude Children’s Research Hospital University of Miami Miller School of Medicine

The Longitudinal Impact of Advance Care Planning (ACP) Conversations between Adolescents with HIV and their Families on Congruence in End of Life Treatment Preferences

Maureen E. Lyon, PhD, ABPP1,2; Linda Briggs, MSN, MA3 Yao Iris Cheng, MS1; Jichuan Wang, PhD1,2 for the FACE Palliative Care Consortium1 Center for Translational Science/Children’s Research Institute, Children’s National Health System, Washington, DC;

2 The George Washington University School of Medicine & Public Health, Washington, DC ; 3 Gundersen Lutheran Medical Foundation

1. Long hospital stay with many treatments and chance of surviving complication is low

2. Functional impairment such as not being able to walk or talk and would need 24-hour nursing care

3. Mental impairment such as not knowing who you are or who you are with and would need 24-hour nursing care

p=0.1012 p=0.1300Leeway: "Do what you think is best at the time, considering my wishes."

p=0.0155 p=0.1738 p<0.0001 p=0.0735 p=0.0096 p=0.5892

p=0.013 p=0.116 p=0.269 p=0.048 p=0.015 p=0.194 Situation 1 Situation 2 Situation 3

Flow of dyads (adolescent/family) through each stage of randomized trial, using intent to treat design

Assessed for eligibility( n=203 dyads)

Excluded (n=1 dyad ) Declined (n=95 dyads) Randomized (n=107 dyads)

Allocated to intervention (n=54 dyads, 6 withdrew) Received allocated Intervention (n=48 Dyads) Did not receive allocation (n=0 dyads)

Allocated to control (n=53 dyads)Received allocated control (n=51 dyads, 2 withdrew) Did not receive allocation (n=0 dyads)

Completed 3-month follow up (n=41 dyads)Missed study visit (n=7 dyads)

Completed 3-month follow up (n=41 dyads)Missed study visit (n=8 dyads)

Analyzed (n=41 dyads)Excluded from analysis (n=0 dyads)

Analyzed (n=41 dyads)Excluded from analysis (n=0 dyads)

Demographics M (SD)/ N (%)

Age in Years M (SD) 17.7 (1.9)

Biological Sex (male) 51 (54.3)

Sexual Orientation heterosexual gay/lesbian bisexual

66 (72.3)15 (16.0) 9 ( 9.6)

African American 87 (94.6)

Ethnicity (Hispanic) 7 ( 7.5)

Education <high school high school some college full time student

51 (54.8)31 (33.3)11(11.83)70 (63.8)

Family Income -Equal or below the Federal poverty line

48 (51.1)

HIV Characteristics M (SD)/N (%)

Route of HIV Infection Perinatal Behavioral Unknown

72 (76.6)29 (21.3) 2 ( 2.1)

Hx of Opportunistic Infection 35 (38.5)

CDC Class C status 27 (28.7)

Undetectable VL (<400) 58 (61.7)

Self-Reported Adherence [M (SD)] 76.1 (29.0)

Self-Reported Adherence ≥ 90% 48 (51.1)

Years Known HIV DX [M(SD)] 5.8 (4.2)

Age Learned HIV DX [M(SD)] 12.2 (3.8)