Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients

• Published in: JPEN. Journal of parenteral and enteral nutrition 2021-09, Vol.45 (7), p.1475-1483
• Main Authors: Winkler, Marion F., Machan, Jason T., Xue, Zhigang, Compher, Charlene
• Format: Article
• Language: English
• Subjects: home parenteral nutrition; intestinal failure; methodology; patient‐reported outcomes; quality of life
• ISSN: 0148-6071; 1941-2444
• DOI: 10.1002/jpen.2040

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.