Maureen E Lyon1,2, Patricia A Garvie3, Lawrence J D'Angelo4,2, Ronald H Dallas5, Linda Briggs6, Patricia M Flynn5, Ana Garcia7, Yao I Cheng8, Jichuan Wang2,8. 1. Divisions of Adolescent and Young Adult Medicine and mlyon@childrensnational.org. 2. Department of Pediatrics, School of Medicine and Health Sciences, George Washington University, Washington, District of Columbia. 3. Research Department, Children's Diagnostic and Treatment Center, Fort Lauderdale, Florida. 4. Divisions of Adolescent and Young Adult Medicine and. 5. Department of Infectious Diseases, St. Jude Children's Research Hospital, Memphis, Tennessee. 6. Respecting Choices, Coalition to Transform Advanced Care Innovations, Washington, District of Columbia; and. 7. Department of Pediatrics, Division of Infectious Disease and Immunology, Batchelor Children's Research Institute, University of Miami Miller School of Medicine, Miami, Florida. 8. Biostatistics and Study Methodology, Center for Translational Science, Children's Research Institute, Children's National, Washington, District of Columbia.
Abstract
OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns. Path analysis examined the mediating role of dyadic treatment congruence with respect to the intervention effect on symptom patterns. RESULTS:Patients were a mean age of 17.8 years old, 54% male, and 93% African American. Latent class analysis identified 2 latent HIV-symptom classes at 12 months: higher symptoms and suffering (27%) and lower symptoms and suffering (73%). FACE pACP had a positive effect on dyadic treatment congruence (β = .65; 95% CI: 0.04 to 1.28), and higher treatment congruence had a negative effect on symptoms and suffering (β = -1.14; 95% CI: -2.55 to -0.24). Therefore, FACE pACP decreased the likelihood of symptoms and suffering through better dyadic treatment congruence (β = -.69; 95% CI: -2.14 to -0.006). Higher religiousness (β = 2.19; 95% CI: 0.22 to 4.70) predicted symptoms and suffering. CONCLUSIONS:FACE pACP increased and maintained agreement about goals of care longitudinally, which lowered adolescents' physical symptoms and suffering, suggesting that early pACP is worthwhile.
RCT Entities:
OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns. Path analysis examined the mediating role of dyadic treatment congruence with respect to the intervention effect on symptom patterns. RESULTS:Patients were a mean age of 17.8 years old, 54% male, and 93% African American. Latent class analysis identified 2 latent HIV-symptom classes at 12 months: higher symptoms and suffering (27%) and lower symptoms and suffering (73%). FACE pACP had a positive effect on dyadic treatment congruence (β = .65; 95% CI: 0.04 to 1.28), and higher treatment congruence had a negative effect on symptoms and suffering (β = -1.14; 95% CI: -2.55 to -0.24). Therefore, FACE pACP decreased the likelihood of symptoms and suffering through better dyadic treatment congruence (β = -.69; 95% CI: -2.14 to -0.006). Higher religiousness (β = 2.19; 95% CI: 0.22 to 4.70) predicted symptoms and suffering. CONCLUSIONS: FACE pACP increased and maintained agreement about goals of care longitudinally, which lowered adolescents' physical symptoms and suffering, suggesting that early pACP is worthwhile.
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