A Scoping Review of Patient‐Reported Measures Administered to Adults Receiving Home Enteral Tube Feeding and Contextual Factors Surrounding Their Use

ABSTRACT

Home enteral tube feeding (HETF) faces significant challenges across micro, meso and macro levels of healthcare. Individual and aggregate data generated from a patient‐reported outcome (PROM) or experience measure (PREM) can be used to tackle multilevel healthcare problems. This review sought to comprehensively describe the current landscape of PROMs and PREMs administered to adults receiving HETF and report on relevant psychometric evaluations. A scoping review was conducted sourcing evidence from five bibliographical databases, two clinical trial registries, a comprehensive grey literature search and citation chaining up to January 2025. Eligible studies reported on administration of at least one PROM or PREM to adults receiving HETF. Data was extracted in relation to study characteristics, population attributes, setting and tool details. The search yielded 14,377 unique studies assessed for eligibility, of which 314 reports were included which corresponded to 256 studies. This consisted of 167 publications and clinical trials reporting results, 70 clinical trial registrations without results and 19 reviews and guidelines. The top focus areas of primary studies were cancer (50%), nutrition support (19%) and neurology (19%) and across studies reporting results 45% were conducted in a population where HETF constituted more than 50% of the sample. There were 184 unique instruments (68 disease‐specific, 43 treatment‐specific, 40 symptom‐specific, 33 generic) of which relevant measurement property evaluations in cohorts with HETF patients were conducted for 22 instruments. Reviews and guidelines suggested instruments with limited consideration of their psychometric testing in HETF cohorts. This review provides a comprehensive overview of the range of PROMs and PREMs administered to adults receiving HETF and explores key considerations when selecting or developing an instrument for use in this cohort.