title: FAmily CEntered (FACE) advance care planning: Study design and methods for a patient-centered communication and decision-making intervention for patients with HIV/AIDS and their surrogate decision-makers.
abstract: Although the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) has become a chronic illness, disease-specific advance care planning has not yet been evaluated for the palliative care needs of adults with HIV/AIDS. This prospective, longitudinal, randomized, two-arm controlled clinical trial aims to test the efficacy of FAmily CEntered advance care planning among adults living with AIDS and/or HIV with co-morbidities on congruence in treatment preferences, healthcare utilization, and quality of life. The FAmily CEntered intervention arm is two face-to-face sessions with a trained, certified facilitator: Session 1) Disease-Specific Advance Care Planning Respecting Choices Interview; Session 2) Completion of advance directive. The Healthy Living Control arm is: Session 1) Developmental/Relationship History; Session 2) Nutrition. Follow-up data will be collected at 3, 6, 12, and 18 months post-intervention. A total of 288 patient/surrogate dyads will be enrolled from five hospital-based, out-patient clinics in Washington, District of Columbia. Participants will be HIV positive and ≥ 21 years of age; surrogates will be ≥ 18 years of age. Exclusion criteria are homicidality, suicidality, psychosis, and impaired cognitive functioning. We hypothesize that this intervention will enhance patient-centered communication with a surrogate decision-maker about end of life treatment preferences over time, enhance patient quality of life and decrease health care utilization. We further hypothesize that this intervention will decrease health disparities for Blacks in completion of advance directives. If proposed aims are achieved, the benefits of palliative care, particularly increased treatment preferences about end-of-life care and enhanced quality of life, will be extended to people living with AIDS.
authors.affiliation: Center for Translational Science, Children's National Health System, 111 Michigan Avenue NW, Washington, DC, USA. Electronic address: akimmel@childrensnational.org.
authors.forename: Allison L
authors.initials: AL
authors.lastname: Kimmel
authors.affiliation: Center for Translational Science, Children's National Health System, 111 Michigan Avenue NW, Washington, DC, USA; The George Washington University School of Medicine and Health Sciences, 2300 I Street NW, Washington, DC, USA. Electronic address: jiwang@cnmc.org.
authors.forename: Jichuan
authors.initials: J
authors.lastname: Wang
authors.affiliation: MedStar Washington Hospital Center, 110 Irving St NW, Washington, DC, USA. Electronic address: Rachel.k.scott@medstar.org.
authors.forename: Rachel K
authors.initials: RK
authors.lastname: Scott
authors.affiliation: Gunderson Lutheran Medical Foundation, Inc., 1900 South Avenue, La Crosse, WI, USA. Electronic address: labriggs@gundersonhealth.org.
authors.forename: Linda
authors.initials: L
authors.lastname: Briggs
authors.affiliation: Center for Translational Science, Children's National Health System, 111 Michigan Avenue NW, Washington, DC, USA; The George Washington University School of Medicine and Health Sciences, 2300 I Street NW, Washington, DC, USA. Electronic address: mlyon@cnmc.org.
authors.forename: Maureen E
authors.initials: ME
authors.lastname: Lyon
mesh_terms: D000163:Acquired Immunodeficiency Syndrome / Q000208:ethnology / Q000523:psychology*; D032722:Advance Care Planning / Q000458:organization & administration*; D001741:Black or African American; D003142:Communication; D015897:Comorbidity; D003657:Decision Making; D005190:Family / Q000523:psychology; D005260:Female; D015658:HIV Infections / Q000208:ethnology / Q000523:psychology; D006296:Health Services / Q000706:statistics & numerical data; D054624:Health Status Disparities; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D018802:Patient-Centered Care / Q000458:organization & administration*; D011446:Prospective Studies; D011788:Quality of Life; D012107:Research Design; D013727:Terminal Care / Q000523:psychology*
keywords: Advance care planning; Decision making; Family intervention; HIV/AIDS; Palliative care; Quality of life