Quality of life assessment instruments in adult patients receiving home parenteral and enteral nutrition: A scoping review

Quality of life (QoL) assessment is important to evaluate the effect of the intervention for patients treated with home parenteral and enteral nutrition (HPEN). The purpose of this scoping review is to describe, evaluate, and recommend QoL instruments used in adult patients receiving HPEN. We used the Arksey and O'Malley framework and performed literature searches in five databases (PubMed, CINAHL, EMBASE, Web of Science, and Cochrane Library) to identify possibly relevant articles that focused on QoL of adult patients receiving HPEN. Of the studies that qualify for full-text screening, two independent researchers extracted data. Twenty-seven QoL instruments were identified, consisting of seven generic instruments, 12 disease-specific instruments, and eight therapy-specific instruments. The Short Form-36 was the most widely used generic instrument and the European Organization for Research and Treatment of Cancer QLQ-C30 was the most commonly employed disease-specific instrument. The recently developed therapy-specific tools, NutriQoL and HPN-QoL, were increasingly employed in studies either alone or in combination with other types of instruments. Important aspects of each instrument were summarized to aid clinicians and researchers in selecting an appropriate instrument when measuring the QoL of adult HPEN patients. Findings could also help to identify the necessity to develop new tools or to modify pre-existing ones to measure QoL of HPEN patients.