Barakat Lamia P, Hammer Shannon N, Wen Yansong, Anil Ashley, Schwartz Lisa A, Reilly Anne, Bagatell Rochelle, Schapira Marilyn M, Li Yimei, Deatrick Janet A
Children's Hospital of Philadelphia, Division of Oncology, Philadelphia, PA, USA.
University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
MDM Policy Pract. 2025 Jun 26;10(1):23814683251344624. doi: 10.1177/23814683251344624. eCollection 2025 Jan-Jun.
UNLABELLED: Limited involvement in treatment-related decision making can affect adolescent and young adult (AYA) cancer outcomes and well-being. Information on developmentally consistent approaches to enhance involvement in and experiences with decision making is lacking. In a pilot randomized trial, we evaluated the feasibility, acceptability, and usability of a Web-based decision support intervention (DECIDES) for treatment-related decisions, with/without coach support. Newly diagnosed/relapsed AYA (15-24 y old) and caregivers were randomized to usual care ( = 11), DECIDES ( = 21), or DECIDES+ ( = 21 with a coach). Feedback on DECIDES was obtained in interviews with AYA and caregivers (DECIDES, DECIDES+) and oncology clinicians ( = 13). Feasibility, acceptability, and usability are described. Quantitative data were integrated with qualitative data. Mean differences (MDs) between DECIDES groups and usual care at 8 wk after randomization are presented for knowledge, decision-making involvement, and decision processes. High retention was achieved. High acceptability and good-excellent usability of DECIDES were reported; qualitative data were congruent with these ratings. AYA and caregivers with a coach demonstrated higher engagement with DECIDES. Based on the MDs, as compared with usual care, AYA (DECIDES and DECIDES+) reported higher shared decision making (MD = 12.58, 11.93), higher decision-making involvement (MD = 19.31, 9.78), and lower decision regret (MD = -13.19, -16.55), respectively, and caregivers (DECIDES, DECIDES+) reported higher shared decision making and AYA decision-making involvement. Minimal changes to knowledge were observed. DECIDES is feasible, acceptable, and usable for AYA treatment-related decision making with possible increases in AYA involvement. Findings suggest that decision support interventions warrant further evaluation for AYA across the treatment trajectory and for a range of treatment-related decisions. Delivery closer to the initial diagnosis and inclusion of a coach for engagement may be advantageous. This study is registered at ClinicalTrials.gov (NCT ID No. NCT06191679). HIGHLIGHTS: Adolescents and young adults with newly diagnosed cancer, and their caregivers, endorsed that decision support is important for their understanding of cancer and treatment and for enhanced communication with their health care teams.Implementation of a decision support intervention shortly after cancer diagnosis is acceptable, feasible, and usable for adolescents and young adults and their caregivers.Oncology clinicians confirm the usability of decision support interventions for their adolescent and young adult patients at diagnosis.Access to a decision support intervention at diagnosis may improve the involvement of adolescents and young adults in their treatment-related decision making and decision processes.Future studies can continue to refine the content and delivery of decision support interventions close to the time of diagnosis, including value of a coach and the role of the caregiver, and targeted to a range of treatment-related decisions.
未标注:在与治疗相关的决策制定过程中参与有限,可能会影响青少年和青年(AYA)癌症患者的治疗结果和幸福感。目前缺乏关于采用与发育阶段相适应的方法来增强决策参与度和体验的相关信息。在一项试点随机试验中,我们评估了一种基于网络的决策支持干预措施(DECIDES)在有/无教练支持的情况下,用于与治疗相关决策的可行性、可接受性和可用性。新诊断/复发的AYA(15 - 24岁)及其照顾者被随机分配至常规护理组(n = 11)、DECIDES组(n = 21)或DECIDES +组(n = 21,有一名教练)。通过对AYA及其照顾者(DECIDES组、DECIDES +组)以及肿瘤临床医生(n = 13)进行访谈,获取了关于DECIDES的反馈。描述了其可行性、可接受性和可用性。定量数据与定性数据相结合。给出了随机分组8周后,DECIDES组与常规护理组在知识、决策参与度和决策过程方面的平均差异(MD)。实现了高保留率。报告显示DECIDES具有较高的可接受性和良好至优秀的可用性;定性数据与这些评分结果一致。有教练指导的AYA及其照顾者对DECIDES的参与度更高。基于平均差异,与常规护理相比,AYA(DECIDES组和DECIDES +组)分别报告了更高的共同决策(MD = 12.58,11.93)、更高的决策参与度(MD = 19.31,9.78)以及更低的决策后悔感(MD = -13.19,-16.55),照顾者(DECIDES组、DECIDES +组)报告了更高的共同决策和AYA的决策参与度。观察到知识方面的变化极小。DECIDES对于AYA与治疗相关的决策制定是可行、可接受且可用的,可能会增加AYA的参与度。研究结果表明,决策支持干预措施值得在AYA患者的整个治疗过程中,针对一系列与治疗相关决策进行进一步评估。在更接近初始诊断时提供干预措施并纳入一名教练以促进参与,可能会更具优势。本研究已在ClinicalTrials.gov注册(NCT ID编号:NCT06191679)。 重点:新诊断癌症的青少年和青年及其照顾者认可决策支持对于他们理解癌症和治疗以及加强与医疗团队沟通的重要性。癌症诊断后不久实施决策支持干预措施,对于青少年和青年及其照顾者来说是可接受、可行且可用的。肿瘤临床医生确认决策支持干预措施在诊断时对其青少年和青年患者的可用性。在诊断时获得决策支持干预措施可能会提高青少年和青年在与治疗相关决策制定和决策过程中的参与度。未来的研究可以继续在接近诊断时间时完善决策支持干预措施的内容和实施方式,包括教练的价值和照顾者的作用,并针对一系列与治疗相关的决策。
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