Van Eenennaam Remko M, Kruithof Willeke J, Kruitwagen-Van Reenen Esther T, van den Berg Leonard H, Visser-Meily Johanna M A, Beelen Anita
Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Centre, University Medical Centre Utrecht, Utrecht, the Netherlands.
Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, the Netherlands and.
Amyotroph Lateral Scler Frontotemporal Degener. 2022 May;23(3-4):242-251. doi: 10.1080/21678421.2021.1973505. Epub 2021 Sep 6.
To describe current practices and barriers and support needs in gastrostomy indication and decision-making amongst rehabilitation physicians of ALS care teams in the Netherlands.
Cross-sectional online survey of rehabilitation physicians of ALS care teams in the Netherlands. Survey items covered current practices in (i.e. indicators and criteria), , , and criteria for preferred ; and and in indication and decision-making. Descriptive analysis was used for quantitative responses, thematic, and content analysis for qualitative data.
Twenty-nine physicians (41%) of 27 ALS care teams (71%) responded. : physicians agreed on important indicators but not cutoff values/criteria. : optimizing nutritional status (100%), ensuring safe food-intake (72%), and reducing effort of meals (59%). : 52% introduces the topic early after diagnosis, 48% at indication. Criteria for included physician preference (69%), availability of service (21%), lower complication risk (17%), contraindication (59%), and patient preference (24%). Reported (69% of respondents) were: patient readiness (52%), timing of indication (31%), and organizational barriers (18%). (62%): evidence-based timing of indication (35%) and tailored patient education (31%).
There is practice variation in the timing of first introduction of gastrostomy and preferred method of placement, but agreement on goals and indicators . More evidence on optimal timing of gastrostomy placement is needed. However, until then early and regular discussion of the topic of gastrostomy and better patient information may promote patient readiness and support patient choice.
描述荷兰肌萎缩侧索硬化症（ALS）护理团队中康复医师在胃造口术适应症及决策方面的当前做法、障碍和支持需求。
对荷兰ALS护理团队的康复医师进行横断面在线调查。调查项目涵盖当前在胃造口术适应症（即指标和标准）、胃造口术的目标、放置胃造口术的首选方法及标准；以及适应症和决策中的障碍和支持需求。定量回答采用描述性分析，定性数据采用主题和内容分析。
27个ALS护理团队中的29名医师（41%）做出了回应。关于适应症：医师们对重要指标达成了一致，但对临界值/标准未达成一致。胃造口术的目标：优化营养状况（100%）、确保安全的食物摄入（72%）以及减少进餐的精力（59%）。介绍胃造口术的时机：52%在诊断后早期引入该话题，48%在出现适应症时引入。胃造口术放置的标准包括医师偏好（69%）、服务的可获得性（21%）、较低的并发症风险（17%）、禁忌症（59%）以及患者偏好（24%）。报告的障碍（69%的受访者）为：患者的准备情况（52%）、适应症的时机（31%）以及组织障碍（18%）。支持需求（62%）为：基于证据的适应症时机（35%）以及量身定制的患者教育（31%）。
在首次引入胃造口术的时机和首选放置方法方面存在实践差异，但在目标和指标上达成了一致。需要更多关于胃造口术最佳放置时机的证据。然而，在此之前，早期且定期地讨论胃造口术话题以及更好地为患者提供信息可能会提高患者的准备程度并支持患者的选择。
