Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis
•There are currently no guidelines for optimal dosing of pancreatic enzyme replacement therapy.•A mobile application, the MyCyfAPP, was developed to help patients calculating the optimal enzyme dose.•Gastro-intestinal complaints may be improved by using MyCyFAPP. Most patients with cystic fibrosis (...
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| Veröffentlicht in: | Journal of cystic fibrosis 2020-07, Vol.19 (4), p.562-568 |
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| creator | Boon, M. Calvo-Lerma, J. Claes, I. Havermans, T. Asseiceira, I. Bulfamante, A. Garriga, M. Masip, E. van Schijndel, B.A.M. Fornes, V. Barreto, C. Colombo, C. Crespo, P. Vicente, S. Janssens, H. Hulst, J. Witters, P. Nobili, R. Pereira, L. Ruperto, M. Van der Wiel, E. Mainz, J.G. De Boeck, K. Ribes-Koninckx, C. |
| description | •There are currently no guidelines for optimal dosing of pancreatic enzyme replacement therapy.•A mobile application, the MyCyfAPP, was developed to help patients calculating the optimal enzyme dose.•Gastro-intestinal complaints may be improved by using MyCyFAPP.
Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency (PI), leading to fat malabsorption, malnutrition, abdominal discomfort and impaired growth. Pancreatic enzyme replacement therapy (PERT) is effective, but evidence based guidelines for dose adjustment are lacking.
A mobile app for self-management of PERT was developed in the context of the HORIZON 2020 project MyCyFAPP. It contains an algorithm to calculate individual PERT-doses for optimal fat digestion, based on in vitro and in vivo studies carried out in the same project.
In addition, the app includes a symptoms diary, educational material, and it is linked to a web tool allowing health care professionals to evaluate patient's data and provide feedback.
A 6-month open label prospective multicenter interventional clinical trial was performed to assess effects of using the app on gastro-intestinal related quality of life (GI QOL), measured by the CF-PedsQL-GI (shortened, CF specific version of the Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Module).
One hundred and seventy-one patients with CF and PI between 2 and 18 years were recruited at 6 European CF centers. Self-reported CF-PedsQL-GI improved significantly from month 0 (M0) (84.3, 76.4–90.3) to month 6 (M6) (89.4, 80.35–93.5) (p< 0.0001). Similar improvements were reported by parents. Lower baseline CF-PedsQL-GI was associated with a greater improvement at M6 (p < 0.001).
The results suggest that the MyCyFAPP may improve GI QOL for children with CF. This tool may help patients to improve self-management of PERT, especially those with considerable GI symptoms. |
| doi_str_mv | 10.1016/j.jcf.2020.04.001 |
| format | Article |
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Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency (PI), leading to fat malabsorption, malnutrition, abdominal discomfort and impaired growth. Pancreatic enzyme replacement therapy (PERT) is effective, but evidence based guidelines for dose adjustment are lacking.
A mobile app for self-management of PERT was developed in the context of the HORIZON 2020 project MyCyFAPP. It contains an algorithm to calculate individual PERT-doses for optimal fat digestion, based on in vitro and in vivo studies carried out in the same project.
In addition, the app includes a symptoms diary, educational material, and it is linked to a web tool allowing health care professionals to evaluate patient's data and provide feedback.
A 6-month open label prospective multicenter interventional clinical trial was performed to assess effects of using the app on gastro-intestinal related quality of life (GI QOL), measured by the CF-PedsQL-GI (shortened, CF specific version of the Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Module).
One hundred and seventy-one patients with CF and PI between 2 and 18 years were recruited at 6 European CF centers. Self-reported CF-PedsQL-GI improved significantly from month 0 (M0) (84.3, 76.4–90.3) to month 6 (M6) (89.4, 80.35–93.5) (p< 0.0001). Similar improvements were reported by parents. Lower baseline CF-PedsQL-GI was associated with a greater improvement at M6 (p < 0.001).
The results suggest that the MyCyFAPP may improve GI QOL for children with CF. This tool may help patients to improve self-management of PERT, especially those with considerable GI symptoms.</description><identifier>ISSN: 1569-1993</identifier><identifier>EISSN: 1873-5010</identifier><identifier>DOI: 10.1016/j.jcf.2020.04.001</identifier><identifier>PMID: 32335023</identifier><language>eng</language><publisher>Netherlands: Elsevier B.V</publisher><subject>CFAbd-Score ; Cystic fibrosis ; Mobile application ; MyCyFAPP ; Pancreatic insufficiency ; PedsQL GI ; PERT ; Quality of life</subject><ispartof>Journal of cystic fibrosis, 2020-07, Vol.19 (4), p.562-568</ispartof><rights>2020 European Cystic Fibrosis Society</rights><rights>Copyright © 2020 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c396t-86ecee0003b9193cda073a12e86235dd40b5ba002ddee45cdd1c9229c684181c3</citedby><cites>FETCH-LOGICAL-c396t-86ecee0003b9193cda073a12e86235dd40b5ba002ddee45cdd1c9229c684181c3</cites><orcidid>0000-0001-8138-5405</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S1569199320301144$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,776,780,3537,27901,27902,65534</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32335023$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Boon, M.</creatorcontrib><creatorcontrib>Calvo-Lerma, J.</creatorcontrib><creatorcontrib>Claes, I.</creatorcontrib><creatorcontrib>Havermans, T.</creatorcontrib><creatorcontrib>Asseiceira, I.</creatorcontrib><creatorcontrib>Bulfamante, A.</creatorcontrib><creatorcontrib>Garriga, M.</creatorcontrib><creatorcontrib>Masip, E.</creatorcontrib><creatorcontrib>van Schijndel, B.A.M.</creatorcontrib><creatorcontrib>Fornes, V.</creatorcontrib><creatorcontrib>Barreto, C.</creatorcontrib><creatorcontrib>Colombo, C.</creatorcontrib><creatorcontrib>Crespo, P.</creatorcontrib><creatorcontrib>Vicente, S.</creatorcontrib><creatorcontrib>Janssens, H.</creatorcontrib><creatorcontrib>Hulst, J.</creatorcontrib><creatorcontrib>Witters, P.</creatorcontrib><creatorcontrib>Nobili, R.</creatorcontrib><creatorcontrib>Pereira, L.</creatorcontrib><creatorcontrib>Ruperto, M.</creatorcontrib><creatorcontrib>Van der Wiel, E.</creatorcontrib><creatorcontrib>Mainz, J.G.</creatorcontrib><creatorcontrib>De Boeck, K.</creatorcontrib><creatorcontrib>Ribes-Koninckx, C.</creatorcontrib><title>Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis</title><title>Journal of cystic fibrosis</title><addtitle>J Cyst Fibros</addtitle><description>•There are currently no guidelines for optimal dosing of pancreatic enzyme replacement therapy.•A mobile application, the MyCyfAPP, was developed to help patients calculating the optimal enzyme dose.•Gastro-intestinal complaints may be improved by using MyCyFAPP.
Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency (PI), leading to fat malabsorption, malnutrition, abdominal discomfort and impaired growth. Pancreatic enzyme replacement therapy (PERT) is effective, but evidence based guidelines for dose adjustment are lacking.
A mobile app for self-management of PERT was developed in the context of the HORIZON 2020 project MyCyFAPP. It contains an algorithm to calculate individual PERT-doses for optimal fat digestion, based on in vitro and in vivo studies carried out in the same project.
In addition, the app includes a symptoms diary, educational material, and it is linked to a web tool allowing health care professionals to evaluate patient's data and provide feedback.
A 6-month open label prospective multicenter interventional clinical trial was performed to assess effects of using the app on gastro-intestinal related quality of life (GI QOL), measured by the CF-PedsQL-GI (shortened, CF specific version of the Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Module).
One hundred and seventy-one patients with CF and PI between 2 and 18 years were recruited at 6 European CF centers. Self-reported CF-PedsQL-GI improved significantly from month 0 (M0) (84.3, 76.4–90.3) to month 6 (M6) (89.4, 80.35–93.5) (p< 0.0001). Similar improvements were reported by parents. Lower baseline CF-PedsQL-GI was associated with a greater improvement at M6 (p < 0.001).
The results suggest that the MyCyFAPP may improve GI QOL for children with CF. This tool may help patients to improve self-management of PERT, especially those with considerable GI symptoms.</description><subject>CFAbd-Score</subject><subject>Cystic fibrosis</subject><subject>Mobile application</subject><subject>MyCyFAPP</subject><subject>Pancreatic insufficiency</subject><subject>PedsQL GI</subject><subject>PERT</subject><subject>Quality of life</subject><issn>1569-1993</issn><issn>1873-5010</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><recordid>eNp9kc9u1DAQhyMEoqXwAFyQj1yyjO38FSe0agGpEhd6thx70p2V46S2tyi8HK-GlxSOnDyWvvlmRr-ieMthx4E3H467oxl3AgTsoNoB8GfFJe9aWdbA4Xmu66Yved_Li-JVjMcMtNB2L4sLKaSsQcjL4tddRDaPTLNpHsgh08viyOhEs2fjHFhEN5aT9voeJ_TpzC7am4AZMQz9z3VCFnBx2mxAOmDQy8ooMh3jbEgntOwHpQOjaQnzY_7d65jCXJJPGBN57bLB_eEeTtpRWs9jHI3IyDNzIGcD-s2xX-N58A0NYY4UXxcvRu0ivnl6r4q7m-vv-y_l7bfPX_efbksj-yaVXYMGEQDk0PNeGquhlZoL7Boha2srGOpBAwhrEavaWMtNL0Rvmq7iHTfyqni_efMFD6e8tZooGnROe5xPUQnZ16KBtmkzyjfU5A1jwFEtgSYdVsVBnXNTR5VzU-fcFFQqx5J73j3pT8OE9l_H36Ay8HEDMB_5SBhUNITeoKWAJik703_0vwHDLa2H</recordid><startdate>20200701</startdate><enddate>20200701</enddate><creator>Boon, M.</creator><creator>Calvo-Lerma, J.</creator><creator>Claes, I.</creator><creator>Havermans, T.</creator><creator>Asseiceira, I.</creator><creator>Bulfamante, A.</creator><creator>Garriga, M.</creator><creator>Masip, E.</creator><creator>van Schijndel, B.A.M.</creator><creator>Fornes, V.</creator><creator>Barreto, C.</creator><creator>Colombo, C.</creator><creator>Crespo, P.</creator><creator>Vicente, S.</creator><creator>Janssens, H.</creator><creator>Hulst, J.</creator><creator>Witters, P.</creator><creator>Nobili, R.</creator><creator>Pereira, L.</creator><creator>Ruperto, M.</creator><creator>Van der Wiel, E.</creator><creator>Mainz, J.G.</creator><creator>De Boeck, K.</creator><creator>Ribes-Koninckx, C.</creator><general>Elsevier B.V</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-8138-5405</orcidid></search><sort><creationdate>20200701</creationdate><title>Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis</title><author>Boon, M. ; Calvo-Lerma, J. ; Claes, I. ; Havermans, T. ; Asseiceira, I. ; Bulfamante, A. ; Garriga, M. ; Masip, E. ; van Schijndel, B.A.M. ; Fornes, V. ; Barreto, C. ; Colombo, C. ; Crespo, P. ; Vicente, S. ; Janssens, H. ; Hulst, J. ; Witters, P. ; Nobili, R. ; Pereira, L. ; Ruperto, M. ; Van der Wiel, E. ; Mainz, J.G. ; De Boeck, K. ; Ribes-Koninckx, C.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c396t-86ecee0003b9193cda073a12e86235dd40b5ba002ddee45cdd1c9229c684181c3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>CFAbd-Score</topic><topic>Cystic fibrosis</topic><topic>Mobile application</topic><topic>MyCyFAPP</topic><topic>Pancreatic insufficiency</topic><topic>PedsQL GI</topic><topic>PERT</topic><topic>Quality of life</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Boon, M.</creatorcontrib><creatorcontrib>Calvo-Lerma, J.</creatorcontrib><creatorcontrib>Claes, I.</creatorcontrib><creatorcontrib>Havermans, T.</creatorcontrib><creatorcontrib>Asseiceira, I.</creatorcontrib><creatorcontrib>Bulfamante, A.</creatorcontrib><creatorcontrib>Garriga, M.</creatorcontrib><creatorcontrib>Masip, E.</creatorcontrib><creatorcontrib>van Schijndel, B.A.M.</creatorcontrib><creatorcontrib>Fornes, V.</creatorcontrib><creatorcontrib>Barreto, C.</creatorcontrib><creatorcontrib>Colombo, C.</creatorcontrib><creatorcontrib>Crespo, P.</creatorcontrib><creatorcontrib>Vicente, S.</creatorcontrib><creatorcontrib>Janssens, H.</creatorcontrib><creatorcontrib>Hulst, J.</creatorcontrib><creatorcontrib>Witters, P.</creatorcontrib><creatorcontrib>Nobili, R.</creatorcontrib><creatorcontrib>Pereira, L.</creatorcontrib><creatorcontrib>Ruperto, M.</creatorcontrib><creatorcontrib>Van der Wiel, E.</creatorcontrib><creatorcontrib>Mainz, J.G.</creatorcontrib><creatorcontrib>De Boeck, K.</creatorcontrib><creatorcontrib>Ribes-Koninckx, C.</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of cystic fibrosis</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Boon, M.</au><au>Calvo-Lerma, J.</au><au>Claes, I.</au><au>Havermans, T.</au><au>Asseiceira, I.</au><au>Bulfamante, A.</au><au>Garriga, M.</au><au>Masip, E.</au><au>van Schijndel, B.A.M.</au><au>Fornes, V.</au><au>Barreto, C.</au><au>Colombo, C.</au><au>Crespo, P.</au><au>Vicente, S.</au><au>Janssens, H.</au><au>Hulst, J.</au><au>Witters, P.</au><au>Nobili, R.</au><au>Pereira, L.</au><au>Ruperto, M.</au><au>Van der Wiel, E.</au><au>Mainz, J.G.</au><au>De Boeck, K.</au><au>Ribes-Koninckx, C.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis</atitle><jtitle>Journal of cystic fibrosis</jtitle><addtitle>J Cyst Fibros</addtitle><date>2020-07-01</date><risdate>2020</risdate><volume>19</volume><issue>4</issue><spage>562</spage><epage>568</epage><pages>562-568</pages><issn>1569-1993</issn><eissn>1873-5010</eissn><abstract>•There are currently no guidelines for optimal dosing of pancreatic enzyme replacement therapy.•A mobile application, the MyCyfAPP, was developed to help patients calculating the optimal enzyme dose.•Gastro-intestinal complaints may be improved by using MyCyFAPP.
Most patients with cystic fibrosis (CF) suffer from pancreatic insufficiency (PI), leading to fat malabsorption, malnutrition, abdominal discomfort and impaired growth. Pancreatic enzyme replacement therapy (PERT) is effective, but evidence based guidelines for dose adjustment are lacking.
A mobile app for self-management of PERT was developed in the context of the HORIZON 2020 project MyCyFAPP. It contains an algorithm to calculate individual PERT-doses for optimal fat digestion, based on in vitro and in vivo studies carried out in the same project.
In addition, the app includes a symptoms diary, educational material, and it is linked to a web tool allowing health care professionals to evaluate patient's data and provide feedback.
A 6-month open label prospective multicenter interventional clinical trial was performed to assess effects of using the app on gastro-intestinal related quality of life (GI QOL), measured by the CF-PedsQL-GI (shortened, CF specific version of the Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Module).
One hundred and seventy-one patients with CF and PI between 2 and 18 years were recruited at 6 European CF centers. Self-reported CF-PedsQL-GI improved significantly from month 0 (M0) (84.3, 76.4–90.3) to month 6 (M6) (89.4, 80.35–93.5) (p< 0.0001). Similar improvements were reported by parents. Lower baseline CF-PedsQL-GI was associated with a greater improvement at M6 (p < 0.001).
The results suggest that the MyCyFAPP may improve GI QOL for children with CF. This tool may help patients to improve self-management of PERT, especially those with considerable GI symptoms.</abstract><cop>Netherlands</cop><pub>Elsevier B.V</pub><pmid>32335023</pmid><doi>10.1016/j.jcf.2020.04.001</doi><tpages>7</tpages><orcidid>https://orcid.org/0000-0001-8138-5405</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Journal of cystic fibrosis, 2020-07, Vol.19 (4), p.562-568 |
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| language | eng |
| recordid | cdi_proquest_miscellaneous_2395260767 |
| source | Elsevier ScienceDirect Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals |
| subjects | CFAbd-Score Cystic fibrosis Mobile application MyCyFAPP Pancreatic insufficiency PedsQL GI PERT Quality of life |
| title | Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis |
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