Current practices and barriers in gastrostomy indication in amyotrophic lateral sclerosis: a survey of ALS care teams in The Netherlands.

Objective: 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.

Methods: 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.

Results: 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%).

Conclusions: 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.