OBJECTIVES: To develop, adapt, and ensure feasibility, acceptability, and safety of the Family/Adolescent-Centered (FACE) Advance Care Planning intervention. PATIENTS AND METHODS: Two-group, randomized, controlled trial in two hospital-based outpatient clinics in Washington, D.C. and Memphis, Tennessee, from 2006 to 2008 was conducted. Participants (n = 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV/AIDS and surrogates/families over age 20. Three 60- to 90-minute sessions were conducted via a semistructured family interview with a trained/certified interviewer. Intervention received: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Control received (1) Developmental History, (2) Health Tips, and (3) Future Plans. Feasibility was measured by percent enrollment, attendance, retention, and completeness of data. Acceptability and safety were measured by Satisfaction Questionnaire, using longitudinal regression analysis. RESULTS:Adolescents' mean age was 16 years; 40% were males; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Intervention adolescents were more likely to rate sessions positively (p = 0.002) and less likely to rate sessions negatively (p = 0.011) than controls. Guardians/surrogates were more likely to rate the sessions positively (p = 0.041) and demonstrated no difference in rating sessions negatively (p = 0.779) than controls. CONCLUSIONS: Existing advance care planning models can be adapted for age, disease, and culture. Adolescents with HIV/AIDS were satisfied with an advance care planning approach that facilitated discussion about their end-of-life wishes with their families. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.
RCT Entities:
OBJECTIVES: To develop, adapt, and ensure feasibility, acceptability, and safety of the Family/Adolescent-Centered (FACE) Advance Care Planning intervention. PATIENTS AND METHODS: Two-group, randomized, controlled trial in two hospital-based outpatient clinics in Washington, D.C. and Memphis, Tennessee, from 2006 to 2008 was conducted. Participants (n = 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV/AIDS and surrogates/families over age 20. Three 60- to 90-minute sessions were conducted via a semistructured family interview with a trained/certified interviewer. Intervention received: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Control received (1) Developmental History, (2) Health Tips, and (3) Future Plans. Feasibility was measured by percent enrollment, attendance, retention, and completeness of data. Acceptability and safety were measured by Satisfaction Questionnaire, using longitudinal regression analysis. RESULTS: Adolescents' mean age was 16 years; 40% were males; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Intervention adolescents were more likely to rate sessions positively (p = 0.002) and less likely to rate sessions negatively (p = 0.011) than controls. Guardians/surrogates were more likely to rate the sessions positively (p = 0.041) and demonstrated no difference in rating sessions negatively (p = 0.779) than controls. CONCLUSIONS: Existing advance care planning models can be adapted for age, disease, and culture. Adolescents with HIV/AIDS were satisfied with an advance care planning approach that facilitated discussion about their end-of-life wishes with their families. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.
Authors: A McCormick; M M McKay; M Wilson; L McKinney; R Paikoff; C Bell; D Baptiste; D Coleman; G Gillming; S Madison; R Scott Journal: AIDS Educ Prev Date: 2000-08
Authors: Betty Davies; Sally A Sehring; J Colin Partridge; Bruce A Cooper; Anne Hughes; Julie C Philp; Aara Amidi-Nouri; Robin F Kramer Journal: Pediatrics Date: 2008-02 Impact factor: 7.124
Authors: Hayley Pessin; Michele Galietta; Christian J Nelson; Robert Brescia; Barry Rosenfeld; William Breitbart Journal: J Palliat Med Date: 2008-05 Impact factor: 2.947
Authors: Maureen E Lyon; Connie Trexler; Carleen Akpan-Townsend; Maryland Pao; Keith Selden; Jean Fletcher; Irene C Addlestone; Lawrence J D'Angelo Journal: AIDS Patient Care STDS Date: 2003-06 Impact factor: 5.078
Authors: Linda A Briggs; Karin T Kirchhoff; Bernard J Hammes; Mi-Kyung Song; Elaine R Colvin Journal: J Prof Nurs Date: 2004 Jan-Feb Impact factor: 2.104
Authors: Kimberley Widger; Dawn Davies; Danielle J Drouin; Laura Beaune; Lysanne Daoust; R Peter Farran; Nago Humbert; Filomena Nalewajek; Marion Rattray; Maria Rugg; Michelle Bishop Journal: Arch Pediatr Adolesc Med Date: 2007-06
Authors: Maureen E Lyon; Patricia A Garvie; Ellin Kao; Linda Briggs; Jianping He; Robert Malow; Lawrence J D'Angelo; Robert McCarter Journal: J Adolesc Health Date: 2010-12-30 Impact factor: 5.012
Authors: Katherine B Curtin; Anne E Watson; Jichuan Wang; Obianuju C Okonkwo; Maureen E Lyon Journal: Contemp Clin Trials Date: 2017-08-24 Impact factor: 2.226
Authors: Ronald H Dallas; Allison Kimmel; Megan L Wilkins; Sohail Rana; Ana Garcia; Yao I Cheng; Jichuan Wang; Maureen E Lyon Journal: Pediatrics Date: 2016-11-01 Impact factor: 7.124
Authors: Melissa K Cousino; Victoria A Miller; Cynthia Smith; Karen Uzark; Ray Lowery; Nichole Rottach; Elizabeth D Blume; Kurt R Schumacher Journal: Palliat Med Date: 2019-10-24 Impact factor: 4.762
Authors: Maureen E Lyon; Ronald H Dallas; Patricia A Garvie; Megan L Wilkins; Ana Garcia; Yao Iris Cheng; Jichuan Wang Journal: BMJ Support Palliat Care Date: 2017-09-21 Impact factor: 3.568
Authors: Maureen E Lyon; Leah Squires; Rachel K Scott; Debra Benator; Linda Briggs; Isabella Greenberg; Lawrence J D'Angelo; Yao Iris Cheng; Jichuan Wang Journal: AIDS Behav Date: 2020-12