Boss Renee D, Vo Holly H, Jabre Nicholas A, Shepard Jennifer, Mercer Amanda, McDermott Anne, Lanier Chisa L, Ding Yuanyuan, Wilfond Benjamin S, Henderson Carrie M
Pediatrics, Johns Hopkins School of Medicine, 200 N. Wolfe Street, Baltimore 21287, USA.
Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore 21287, USA.
PEC Innov. 2023 Jun 7;2:100173. doi: 10.1016/j.pecinn.2023.100173. eCollection 2023 Dec.
To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation.
Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision.
We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options.
The HomeVENT pilot was feasible and acceptable.
This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
试行HomeVENT的可行性和可接受性，这是一种针对儿科家庭通气的家庭-临床医生决策的系统方法。
采用前后队列设计，在3个中心招募面临家庭通气决策的儿童的家长和临床医生。家庭干预措施包括：1）一个描述之前选择和反对家庭通气的家庭经历的网站；2）一份问题提示清单（QPL）；3）探索家庭生活和价值观的深入访谈。临床医生的HomeVENT干预包括一次结构化的团队会议，根据家庭的家庭生活和价值观审查治疗方案。所有参与者在做出决定一个月后接受访谈。
我们招募了30个家庭和34名临床医生。大多数常规护理组家庭（14/15）但较少干预组家庭（10/15）选择家庭通气。家庭报告称，该网站帮助他们考虑不同的治疗方案，QPL促进了家庭内部以及与团队的讨论，访谈帮助他们意识到家庭通气可能如何改变他们的日常生活。临床医生报告称，团队会议有助于明确预后并对治疗方案进行优先排序。
HomeVENT试点是可行且可接受的。
这种针对儿科家庭通气决策的系统方法将家庭价值观放在首位，是在匆忙的临床环境中提高共同决策严谨性的一种新方法。
