Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients
Marion F. Winkler, Jason T. Machan, Zhigang Xue, Charlene Compher
Abstract
BACKGROUND: Patient-reported outcome (PRO) measures often address quality of life (QOL) and help improve communication and shared decision-making. The home parenteral nutrition patient-reported outcome questionnaire (HPN-PROQ) was developed for patients to self-assess factors that influence QOL. The aim of this study was to establish construct validity. METHOD: Responses were analyzed for 77 HPN-dependent patients with chronic and prolonged acute intestinal failure. General linear modeling was conducted to describe patterns of interactions and association between items included in the HPN-PROQ. RESULTS: Most patients (78%) had chronic intestinal failure. Mean HPN duration was 3.3 ± 0.6 years. Underlying illness had a moderate or major effect on QOL for 88%; 59% reported their QOL had been negatively impacted by HPN. There was no difference in QOL among chronic patients, depending on how important they rated "being able to do what I want to do" (P = .1), whereas prolonged acute intestinal failure patients had significantly lower QOL if they rated "being able to do what I want to do" extremely vs very important (adjusted P = .02). Confidence with ability to perform HPN procedures was associated with understanding the need for HPN (P < .01). As ratings increased for emotional difficulty in coping with HPN so did HPN impact on QOL (linear trend P < .01). CONCLUSION: Construct validity of the HPN-PROQ was evident. The HPN-PROQ considers the unique experience of living with a complex nutrition therapy.