Measuring symptoms in gastrointestinal cancer: a systematic review of assessment instruments

Abstract

Purpose: It is critical for gastrointestinal cancer researchers and clinicians to have access to comprehensive, sensitive and simple-to-use symptom measures that allow them to understand and quantify the subjective patient experience. Development and validation of such scales requires training in psychometrics and occasionally uses technical jargon that can be difficult to penetrate. This review evaluates existing measures of gastrointestinal cancer symptoms, provides tool descriptions, and uses predefined, objective quality criteria to rate psychometric quality and facilitate tool choices for researchers and clinicians.

Methods: MEDLINE, EMBASE, CINAHL, and PsycINFO databases were systematically reviewed for scales assessing gastrointestinal cancer and gastrointestinal cancer site-specific symptoms. Evaluation criteria were the following: breadth of domain coverage (content validity), high internal consistency (α ≥ .80), sensitivity to change, and extent of validation.

Results: In n = 36 validation studies, 26 gastrointestinal cancer symptom measures were identified. Of these, n = 13 tools met criteria for recommendation, and six in particular showed strong psychometric properties. The Functional Assessment of Cancer Therapy-Colorectal (FACT-C), European Organization for Research and Treatment of Cancer (EORTC) gastric cancer module (QLQ-STO22), FACT-Hepatobiliary (FACT-Hep), and EORTC oesophagus, oesophago-gastric junction and stomach module (QLQ OG-25) were identified as the most comprehensive and best validated scales for each of the major gastrointestinal cancer sites. The FACT-Colorectal Symptom Index (FCSI-9) and the National Comprehensive Cancer Network (NCCN) FACT-Hepatobiliary Symptom Index (FHSI-18) were specifically validated in patients with advanced colorectal and liver cancer and also demonstrated superior psychometric properties.

Conclusions: Several comprehensive, well-validated scales exist to adequately assess gastrointestinal cancer site-specific symptoms. Specifically, gastrointestinal cancer submodules of the FACT quality of life questionnaire represent adequate tool choices in most instances and overall, were better validated than the respective EORTC tools. Further improvement of existing, highly rated measures is recommended.