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

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...

Full description

Saved in:
Bibliographic Details
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
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
cited_by cdi_FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273
cites cdi_FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273
container_end_page 1483
container_issue 7
container_start_page 1475
container_title JPEN. Journal of parenteral and enteral nutrition
container_volume 45
creator Winkler, Marion F.
Machan, Jason T.
Xue, Zhigang
Compher, Charlene
description 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.
doi_str_mv 10.1002/jpen.2040
format article
fullrecord <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2454106078</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2454106078</sourcerecordid><originalsourceid>FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273</originalsourceid><addsrcrecordid>eNp1kc1u1DAURi0EokNhwQsgL2GR9tpxMg670dDSVqN2-FtHjucaXCX21HZAs-MReI4-Vp-kDtOyY2Xp8_HRvf4Iec3giAHw4-stuiMOAp6QGWsEK7gQ4imZAROyqGHODsiLGK8BoKwBnpODsoRGVrKckdszPyBdq4AuYVA9vRxTsMl6l8Nkc3r3-89n3PqQcEOvxqQn_tOIcWKcsgHf0y_oYn7zE2ny-U71Nu2oN3RlDdIP1hjMeo2RLgbvvtPlj-Cd1VS5DV0H3-csuxd6TEjP8xhZ7fIkp8r2Y8DHOeJL8syoPuKrh_OQfDs9-bo8K1ZXH8-Xi1WhuQAoZNN1JXRKl41UtRCykbqpTFOVXCldG17VHevqSiCYeVUZXWvJaqOlQbbhfF4ekrd77zb4m2nRdrBRY98rh36MLReVYJC_VWb03R7VwccY0LTbYAcVdi2Ddqqmnappp2oy--ZBO3YDbv6Rj11k4HgP_LI97v5vai_WJ5d_lfdn4p0a</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2454106078</pqid></control><display><type>article</type><title>Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients</title><source>Wiley:Jisc Collections:Wiley Read and Publish Open Access 2024-2025 (reading list)</source><creator>Winkler, Marion F. ; Machan, Jason T. ; Xue, Zhigang ; Compher, Charlene</creator><creatorcontrib>Winkler, Marion F. ; Machan, Jason T. ; Xue, Zhigang ; Compher, Charlene</creatorcontrib><description>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 &lt; .01). As ratings increased for emotional difficulty in coping with HPN so did HPN impact on QOL (linear trend P &lt; .01). Conclusion Construct validity of the HPN‐PROQ was evident. The HPN‐PROQ considers the unique experience of living with a complex nutrition therapy.</description><identifier>ISSN: 0148-6071</identifier><identifier>EISSN: 1941-2444</identifier><identifier>DOI: 10.1002/jpen.2040</identifier><identifier>PMID: 33098583</identifier><language>eng</language><publisher>United States</publisher><subject>home parenteral nutrition ; intestinal failure ; methodology ; patient‐reported outcomes ; quality of life</subject><ispartof>JPEN. Journal of parenteral and enteral nutrition, 2021-09, Vol.45 (7), p.1475-1483</ispartof><rights>2020 American Society for Parenteral and Enteral Nutrition</rights><rights>2020 American Society for Parenteral and Enteral Nutrition.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273</citedby><cites>FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273</cites><orcidid>0000-0003-0946-8294 ; 0000-0002-5492-0553</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>314,776,780,27903,27904</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33098583$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Winkler, Marion F.</creatorcontrib><creatorcontrib>Machan, Jason T.</creatorcontrib><creatorcontrib>Xue, Zhigang</creatorcontrib><creatorcontrib>Compher, Charlene</creatorcontrib><title>Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients</title><title>JPEN. Journal of parenteral and enteral nutrition</title><addtitle>JPEN J Parenter Enteral Nutr</addtitle><description>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 &lt; .01). As ratings increased for emotional difficulty in coping with HPN so did HPN impact on QOL (linear trend P &lt; .01). Conclusion Construct validity of the HPN‐PROQ was evident. The HPN‐PROQ considers the unique experience of living with a complex nutrition therapy.</description><subject>home parenteral nutrition</subject><subject>intestinal failure</subject><subject>methodology</subject><subject>patient‐reported outcomes</subject><subject>quality of life</subject><issn>0148-6071</issn><issn>1941-2444</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><recordid>eNp1kc1u1DAURi0EokNhwQsgL2GR9tpxMg670dDSVqN2-FtHjucaXCX21HZAs-MReI4-Vp-kDtOyY2Xp8_HRvf4Iec3giAHw4-stuiMOAp6QGWsEK7gQ4imZAROyqGHODsiLGK8BoKwBnpODsoRGVrKckdszPyBdq4AuYVA9vRxTsMl6l8Nkc3r3-89n3PqQcEOvxqQn_tOIcWKcsgHf0y_oYn7zE2ny-U71Nu2oN3RlDdIP1hjMeo2RLgbvvtPlj-Cd1VS5DV0H3-csuxd6TEjP8xhZ7fIkp8r2Y8DHOeJL8syoPuKrh_OQfDs9-bo8K1ZXH8-Xi1WhuQAoZNN1JXRKl41UtRCykbqpTFOVXCldG17VHevqSiCYeVUZXWvJaqOlQbbhfF4ekrd77zb4m2nRdrBRY98rh36MLReVYJC_VWb03R7VwccY0LTbYAcVdi2Ddqqmnappp2oy--ZBO3YDbv6Rj11k4HgP_LI97v5vai_WJ5d_lfdn4p0a</recordid><startdate>202109</startdate><enddate>202109</enddate><creator>Winkler, Marion F.</creator><creator>Machan, Jason T.</creator><creator>Xue, Zhigang</creator><creator>Compher, Charlene</creator><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0003-0946-8294</orcidid><orcidid>https://orcid.org/0000-0002-5492-0553</orcidid></search><sort><creationdate>202109</creationdate><title>Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients</title><author>Winkler, Marion F. ; Machan, Jason T. ; Xue, Zhigang ; Compher, Charlene</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>home parenteral nutrition</topic><topic>intestinal failure</topic><topic>methodology</topic><topic>patient‐reported outcomes</topic><topic>quality of life</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Winkler, Marion F.</creatorcontrib><creatorcontrib>Machan, Jason T.</creatorcontrib><creatorcontrib>Xue, Zhigang</creatorcontrib><creatorcontrib>Compher, Charlene</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>JPEN. Journal of parenteral and enteral nutrition</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Winkler, Marion F.</au><au>Machan, Jason T.</au><au>Xue, Zhigang</au><au>Compher, Charlene</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients</atitle><jtitle>JPEN. Journal of parenteral and enteral nutrition</jtitle><addtitle>JPEN J Parenter Enteral Nutr</addtitle><date>2021-09</date><risdate>2021</risdate><volume>45</volume><issue>7</issue><spage>1475</spage><epage>1483</epage><pages>1475-1483</pages><issn>0148-6071</issn><eissn>1941-2444</eissn><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 &lt; .01). As ratings increased for emotional difficulty in coping with HPN so did HPN impact on QOL (linear trend P &lt; .01). Conclusion Construct validity of the HPN‐PROQ was evident. The HPN‐PROQ considers the unique experience of living with a complex nutrition therapy.</abstract><cop>United States</cop><pmid>33098583</pmid><doi>10.1002/jpen.2040</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0003-0946-8294</orcidid><orcidid>https://orcid.org/0000-0002-5492-0553</orcidid></addata></record>
fulltext fulltext
identifier ISSN: 0148-6071
ispartof JPEN. Journal of parenteral and enteral nutrition, 2021-09, Vol.45 (7), p.1475-1483
issn 0148-6071
1941-2444
language eng
recordid cdi_proquest_miscellaneous_2454106078
source Wiley:Jisc Collections:Wiley Read and Publish Open Access 2024-2025 (reading list)
subjects home parenteral nutrition
intestinal failure
methodology
patient‐reported outcomes
quality of life
title Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients
url http://sfxeu10.hosted.exlibrisgroup.com/loughborough?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-22T12%3A29%3A26IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_cross&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Home%20Parenteral%20Nutrition%20Patient%E2%80%90Reported%20Outcome%20Questionnaire:%20Sensitive%20to%20Quality%20of%20Life%20Differences%20Among%20Chronic%20and%20Prolonged%20Acute%20Intestinal%20Failure%20Patients&rft.jtitle=JPEN.%20Journal%20of%20parenteral%20and%20enteral%20nutrition&rft.au=Winkler,%20Marion%20F.&rft.date=2021-09&rft.volume=45&rft.issue=7&rft.spage=1475&rft.epage=1483&rft.pages=1475-1483&rft.issn=0148-6071&rft.eissn=1941-2444&rft_id=info:doi/10.1002/jpen.2040&rft_dat=%3Cproquest_cross%3E2454106078%3C/proquest_cross%3E%3Cgrp_id%3Ecdi_FETCH-LOGICAL-c2400-89bb30bac398a644898c95f9532aac6f256b1b654e0f755fc6c816fc8fe1d2273%3C/grp_id%3E%3Coa%3E%3C/oa%3E%3Curl%3E%3C/url%3E&rft_id=info:oai/&rft_pqid=2454106078&rft_id=info:pmid/33098583&rfr_iscdi=true