Can you tell me why you made that choice?: A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant
Adolescents; Advance care planning; decision making; palliative care; Young adults
BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. AIM: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. DESIGN: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices<sup> R</sup> Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. SETTINGS/PARTICIPANTS: A total of 10 adolescent and young adult patients (aged 14-27 years) undergoing bone marrow transplant at an academic Midwest children's hospital were involved in the study. RESULTS: Influences on participants' decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant's concern over the perceived negative impact of discontinuing treatment on their families. CONCLUSION: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.
Needle JS; Peden-McAlpine C; Liaschenko J; Koschmann K; Sanders N; Smith A; Schellinger SE; Lyon ME
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319883977" target="_blank" rel="noreferrer noopener">10.1177/0269216319883977</a>
Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial
The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined.To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences.This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022.Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information.Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis.A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (β [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69).Results of this trial showed that, for those who received the FACE-TC intervention, the families’ knowledge of their adolescents’ end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity–based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study.ClinicalTrials.gov Identifier: NCT02693665
Needle JS; Friebert S; Thompkins JD; Grossoehme DH; Baker JN; Jiang J; Wang J; Lyon ME
JAMA Network Open
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2022.20696" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.20696</a>