Division of Population Sciences (JWM, LF, AK), Dana-Farber Cancer Institute, Boston, Massachusetts, U.S.; Department of Pediatric Oncology (JWM, AL, CBW), Dana-Farber Cancer Institute, Boston, Massachusetts, U.S..
Division of Population Sciences (JWM, LF, AK), Dana-Farber Cancer Institute, Boston, Massachusetts, U.S.
J Pain Symptom Manage. 2023 Jul;66(1):54-61. doi: 10.1016/j.jpainsymman.2023.03.005. Epub 2023 Mar 17.
Quality measures have been devised for end-of-life care of older adults with cancer, but are lacking for adolescents and young adults (AYAs).
We previously conducted interviews with AYAs, family caregivers, and clinicians to identify priority domains for high quality care of AYAs with advanced cancer. The goal of this study was to use a modified Delphi process to form consensus around the highest priority quality indicators.
A modified Delphi process was conducted with 10 AYAs with recurrent or metastatic cancer, 11 family caregivers, and 29 multidisciplinary clinicians, using small group web conferences. Participants were asked to rate the importance of each of 41 potential quality indicators, rank the 10 most important, and engage in discussion to reconcile differences.
Of 41 initial indicators, 34 were rated as highly important (rating seven, eight, or nine on a nine-point scale) by >70% of participants. The panel was unable to reach consensus around the 10 most important indicators. Instead, participants recommended retaining a larger set of indicators to reflect potential for different priorities across the population, resulting in a final set of 32 indicators. Recommended indicators broadly encompassed attention to physical symptoms; quality of life; psychosocial, and spiritual care; communication and decision-making; relationships with clinicians; care and treatment; and independence.
A patient- and family-centered process for quality indicator development led to strong endorsement of multiple potential indicators by Delphi participants. Further validation and refinement will be performed using a survey of bereaved family members.
已经为老年癌症患者制定了临终关怀质量措施，但缺乏青少年和年轻成人（AYA）的相关措施。
我们之前对 AYA、家庭照顾者和临床医生进行了访谈，以确定为晚期癌症 AYA 提供高质量护理的优先领域。本研究的目的是使用改良 Delphi 流程，就最高优先级的质量指标达成共识。
采用改良 Delphi 流程，对 10 名患有复发性或转移性癌症的 AYA、11 名家庭照顾者和 29 名多学科临床医生进行了研究，使用小型小组网络会议。参与者被要求对 41 个潜在质量指标中的每一个进行重要性评分，对 10 个最重要的指标进行排名，并进行讨论以解决分歧。
在最初的 41 个指标中，有 34 个指标得到了 70%以上参与者的高度评价（评分在 9 分制中为 7、8 或 9 分）。专家组未能就 10 个最重要的指标达成共识。相反，参与者建议保留更多的指标，以反映人群中不同的优先事项，最终确定了 32 个指标。建议的指标广泛涵盖了对身体症状的关注；生活质量；心理社会和精神关怀；沟通和决策；与临床医生的关系；护理和治疗；以及独立性。
以患者和家庭为中心的质量指标制定过程得到了 Delphi 参与者对多个潜在指标的强烈支持。将通过对丧亲家庭成员的调查进一步验证和完善。
