Home Parenteral Nutrition Patient-Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients.
home parenteral nutrition
intestinal failure
methodology
patient-reported outcomes
quality of life
Journal
JPEN. Journal of parenteral and enteral nutrition
ISSN: 1941-2444
Titre abrégé: JPEN J Parenter Enteral Nutr
Pays: United States
ID NLM: 7804134
Informations de publication
Date de publication:
09 2021
09 2021
Historique:
received:
02
09
2020
accepted:
19
10
2020
pubmed:
25
10
2020
medline:
3
11
2021
entrez:
24
10
2020
Statut:
ppublish
Résumé
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. 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. 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). Construct validity of the HPN-PROQ was evident. The HPN-PROQ considers the unique experience of living with a complex nutrition therapy.
Sections du résumé
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.
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1475-1483Subventions
Organisme : Chinese Scholarship Council Joint-PhD Training Program
ID : 201806210415
Informations de copyright
© 2020 American Society for Parenteral and Enteral Nutrition.
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