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

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.

Quality of Life: A Patient‐Reported Outcome Worth Monitoring

“…The reduction of PS volume or the decrease in HPN infusion frequency must be balanced with ongoing assessment of nutrition and hydration status as well as the subjective experience of feeling unwell, dry, or worn out on noninfusion days 14,16 . Even though some patients rate having HPN‐free nights and lower PS volumes important, others report significantly better QOL with highest HPN volume 14 . Still others are able to balance the burdens of being “hooked up” and “tied down” (by HPN technology) with the benefit of being alive 2,3 …”

“…[10][11][12][13] Having one or more nights without HPN or having a shorter HPN infusion is a very or extremely important outcome for HPN-dependent adults. 14 Treatment advances, specifically with glucagon-like peptide-2 (GLP-2) analogues, © 2021 American Society for Parenteral and Enteral Nutrition help patients reduce PS dependency and, in some, achieve enteral autonomy. QOL, when measured as a part of these studies, was beneficially influenced by PS volume reduction in combination with GLP-2 therapy.…”

“…Finally, we must acknowledge individual variability among the heterogeneous population of patients with acute vs chronic IF, underlying disease, and HPN dependency, as well as differences in how care is provided in centers of excellence such as that reported by Nordsten et al 15 The reduction of PS volume or the decrease in HPN infusion frequency must be balanced with ongoing assessment of nutrition and hydration status as well as the subjective experience of feeling unwell, dry, or worn out on noninfusion days. 14,16 Even though some patients rate having HPN-free nights and lower PS volumes important, others report significantly better QOL with highest HPN volume. 14 Still others are able to balance the burdens of being "hooked up" and "tied down" (by HPN technology) with the benefit of being alive.…”

“…14,16 Even though some patients rate having HPN-free nights and lower PS volumes important, others report significantly better QOL with highest HPN volume. 14 Still others are able to balance the burdens of being "hooked up" and "tied down" (by HPN technology) with the benefit of being alive. 2,3 Taken in total, the recent body of work in the area of QOL and IF incrementally benefits our knowledge of the lived experience of patients who have SBS, as well as those who require long-term HPN.…”

“…Using these tools, we know that QOL is associated with the length of HPN dependency, underlying disease, living status, the number of HPN infusions days, and the volume of parenteral support (PS) 10–13 . Having one or more nights without HPN or having a shorter HPN infusion is a very or extremely important outcome for HPN‐dependent adults 14 . Treatment advances, specifically with glucagon‐like peptide‐2 (GLP‐2) analogues, help patients reduce PS dependency and, in some, achieve enteral autonomy.…”