Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking
Objectives To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism...
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| Veröffentlicht in: | Clinical rheumatology 2019-11, Vol.38 (11), p.3217-3225 |
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| creator | El Miedany, Yasser El Gaafary, M. Lotfy, H. El Aroussy, N. Mekkawy, D. Nasef, S. I. Farag, Y. Almedany, S. Wassif, Ghada |
| description | Objectives
To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes.
Methods
The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols.
Results
A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients’ adherence to therapy was significantly (
p
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| doi_str_mv | 10.1007/s10067-019-04687-y |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2261970495</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2260499482</sourcerecordid><originalsourceid>FETCH-LOGICAL-c375t-c17d98439705f756d9bdd8ac3e1d703c859df51fbdb36d936093e9e1cbc46ca3</originalsourceid><addsrcrecordid>eNp9kc1u3CAURlHUKpkmeYEuKqRuuqEBYxuTXRWlP1KkLJo9wnCdYWrDBPBI8wZ97OBMmkhdZANI93znIn0IfWT0K6NUXKRytoJQJgmt206Q_RFasZrXRMpavkMrKgQlnMnuBH1IaUMprTrJjtEJZ7wStGtW6O_vtY5gsQXjkgueTPqP8_dYO4uHEPFm3oF3I2BnXdjqvHYG65jX0WWXLvEUdgs9xDBh50tg0tntABfSgc8Y7GzKM3icQwEyRG2eALMIjB5xMfpl4xl6P-gxwfnzfYruvl_fXf0kN7c_fl19uyGGiyYTw4SVXc2loM0gmtbK3tpOGw7MCspN10g7NGzobc_LkLdUcpDATG_q1mh-ir4ctNsYHmZIWU0uGRhH7SHMSVVVy4q7lk1BP_-HbsIcffncQhVE1l1VqOpAmRhSijCobXSTjnvFqFpqUoeaVKlJPdWk9iX06Vk99xPYl8i_XgrAD0AqI38P8XX3G9pHECahlQ</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2260499482</pqid></control><display><type>article</type><title>Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking</title><source>MEDLINE</source><source>Springer Nature - Complete Springer Journals</source><creator>El Miedany, Yasser ; El Gaafary, M. ; Lotfy, H. ; El Aroussy, N. ; Mekkawy, D. ; Nasef, S. I. ; Farag, Y. ; Almedany, S. ; Wassif, Ghada</creator><creatorcontrib>El Miedany, Yasser ; El Gaafary, M. ; Lotfy, H. ; El Aroussy, N. ; Mekkawy, D. ; Nasef, S. I. ; Farag, Y. ; Almedany, S. ; Wassif, Ghada ; PRINTO Egypt ; on behalf of PRINTO Egypt</creatorcontrib><description>Objectives
To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes.
Methods
The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols.
Results
A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients’ adherence to therapy was significantly (
p
< 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (
p
< 0.01).
Conclusions
The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes.
Key Points
• This work represents the second generation of shared decision-making tools.
• The developed tool adopts an interactive style and enhances critical thinking, giving the patients the facility of making their own decision regarding their management.
• The work gives an example of core domain set of outcomes which can be used for shared decision-making interventions.</description><identifier>ISSN: 0770-3198</identifier><identifier>EISSN: 1434-9949</identifier><identifier>DOI: 10.1007/s10067-019-04687-y</identifier><identifier>PMID: 31327085</identifier><language>eng</language><publisher>London: Springer London</publisher><subject>Adolescent ; Arthritis ; Arthritis, Juvenile ; Child ; Children ; Clinical decision making ; Clinical outcomes ; Critical thinking ; Decision making ; Decision Making, Shared ; Female ; Humans ; International standards ; Male ; Medication Adherence - statistics & numerical data ; Medicine ; Medicine & Public Health ; Original Article ; Patient compliance ; Patient Education as Topic ; Patient Reported Outcome Measures ; Patients ; Rheumatology</subject><ispartof>Clinical rheumatology, 2019-11, Vol.38 (11), p.3217-3225</ispartof><rights>International League of Associations for Rheumatology (ILAR) 2019</rights><rights>Clinical Rheumatology is a copyright of Springer, (2019). All Rights Reserved.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c375t-c17d98439705f756d9bdd8ac3e1d703c859df51fbdb36d936093e9e1cbc46ca3</citedby><cites>FETCH-LOGICAL-c375t-c17d98439705f756d9bdd8ac3e1d703c859df51fbdb36d936093e9e1cbc46ca3</cites><orcidid>0000-0002-4543-692X</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s10067-019-04687-y$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s10067-019-04687-y$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>314,780,784,27924,27925,41488,42557,51319</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31327085$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>El Miedany, Yasser</creatorcontrib><creatorcontrib>El Gaafary, M.</creatorcontrib><creatorcontrib>Lotfy, H.</creatorcontrib><creatorcontrib>El Aroussy, N.</creatorcontrib><creatorcontrib>Mekkawy, D.</creatorcontrib><creatorcontrib>Nasef, S. I.</creatorcontrib><creatorcontrib>Farag, Y.</creatorcontrib><creatorcontrib>Almedany, S.</creatorcontrib><creatorcontrib>Wassif, Ghada</creatorcontrib><creatorcontrib>PRINTO Egypt</creatorcontrib><creatorcontrib>on behalf of PRINTO Egypt</creatorcontrib><title>Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking</title><title>Clinical rheumatology</title><addtitle>Clin Rheumatol</addtitle><addtitle>Clin Rheumatol</addtitle><description>Objectives
To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes.
Methods
The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols.
Results
A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients’ adherence to therapy was significantly (
p
< 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (
p
< 0.01).
Conclusions
The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes.
Key Points
• This work represents the second generation of shared decision-making tools.
• The developed tool adopts an interactive style and enhances critical thinking, giving the patients the facility of making their own decision regarding their management.
• The work gives an example of core domain set of outcomes which can be used for shared decision-making interventions.</description><subject>Adolescent</subject><subject>Arthritis</subject><subject>Arthritis, Juvenile</subject><subject>Child</subject><subject>Children</subject><subject>Clinical decision making</subject><subject>Clinical outcomes</subject><subject>Critical thinking</subject><subject>Decision making</subject><subject>Decision Making, Shared</subject><subject>Female</subject><subject>Humans</subject><subject>International standards</subject><subject>Male</subject><subject>Medication Adherence - statistics & numerical data</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Original Article</subject><subject>Patient compliance</subject><subject>Patient Education as Topic</subject><subject>Patient Reported Outcome Measures</subject><subject>Patients</subject><subject>Rheumatology</subject><issn>0770-3198</issn><issn>1434-9949</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2019</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><recordid>eNp9kc1u3CAURlHUKpkmeYEuKqRuuqEBYxuTXRWlP1KkLJo9wnCdYWrDBPBI8wZ97OBMmkhdZANI93znIn0IfWT0K6NUXKRytoJQJgmt206Q_RFasZrXRMpavkMrKgQlnMnuBH1IaUMprTrJjtEJZ7wStGtW6O_vtY5gsQXjkgueTPqP8_dYO4uHEPFm3oF3I2BnXdjqvHYG65jX0WWXLvEUdgs9xDBh50tg0tntABfSgc8Y7GzKM3icQwEyRG2eALMIjB5xMfpl4xl6P-gxwfnzfYruvl_fXf0kN7c_fl19uyGGiyYTw4SVXc2loM0gmtbK3tpOGw7MCspN10g7NGzobc_LkLdUcpDATG_q1mh-ir4ctNsYHmZIWU0uGRhH7SHMSVVVy4q7lk1BP_-HbsIcffncQhVE1l1VqOpAmRhSijCobXSTjnvFqFpqUoeaVKlJPdWk9iX06Vk99xPYl8i_XgrAD0AqI38P8XX3G9pHECahlQ</recordid><startdate>20191101</startdate><enddate>20191101</enddate><creator>El Miedany, Yasser</creator><creator>El Gaafary, M.</creator><creator>Lotfy, H.</creator><creator>El Aroussy, N.</creator><creator>Mekkawy, D.</creator><creator>Nasef, S. I.</creator><creator>Farag, Y.</creator><creator>Almedany, S.</creator><creator>Wassif, Ghada</creator><general>Springer London</general><general>Springer Nature B.V</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7T5</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>H94</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-4543-692X</orcidid></search><sort><creationdate>20191101</creationdate><title>Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking</title><author>El Miedany, Yasser ; El Gaafary, M. ; Lotfy, H. ; El Aroussy, N. ; Mekkawy, D. ; Nasef, S. I. ; Farag, Y. ; Almedany, S. ; Wassif, Ghada</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c375t-c17d98439705f756d9bdd8ac3e1d703c859df51fbdb36d936093e9e1cbc46ca3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2019</creationdate><topic>Adolescent</topic><topic>Arthritis</topic><topic>Arthritis, Juvenile</topic><topic>Child</topic><topic>Children</topic><topic>Clinical decision making</topic><topic>Clinical outcomes</topic><topic>Critical thinking</topic><topic>Decision making</topic><topic>Decision Making, Shared</topic><topic>Female</topic><topic>Humans</topic><topic>International standards</topic><topic>Male</topic><topic>Medication Adherence - statistics & numerical data</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Original Article</topic><topic>Patient compliance</topic><topic>Patient Education as Topic</topic><topic>Patient Reported Outcome Measures</topic><topic>Patients</topic><topic>Rheumatology</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>El Miedany, Yasser</creatorcontrib><creatorcontrib>El Gaafary, M.</creatorcontrib><creatorcontrib>Lotfy, H.</creatorcontrib><creatorcontrib>El Aroussy, N.</creatorcontrib><creatorcontrib>Mekkawy, D.</creatorcontrib><creatorcontrib>Nasef, S. I.</creatorcontrib><creatorcontrib>Farag, Y.</creatorcontrib><creatorcontrib>Almedany, S.</creatorcontrib><creatorcontrib>Wassif, Ghada</creatorcontrib><creatorcontrib>PRINTO Egypt</creatorcontrib><creatorcontrib>on behalf of PRINTO Egypt</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Immunology Abstracts</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><jtitle>Clinical rheumatology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>El Miedany, Yasser</au><au>El Gaafary, M.</au><au>Lotfy, H.</au><au>El Aroussy, N.</au><au>Mekkawy, D.</au><au>Nasef, S. I.</au><au>Farag, Y.</au><au>Almedany, S.</au><au>Wassif, Ghada</au><aucorp>PRINTO Egypt</aucorp><aucorp>on behalf of PRINTO Egypt</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking</atitle><jtitle>Clinical rheumatology</jtitle><stitle>Clin Rheumatol</stitle><addtitle>Clin Rheumatol</addtitle><date>2019-11-01</date><risdate>2019</risdate><volume>38</volume><issue>11</issue><spage>3217</spage><epage>3225</epage><pages>3217-3225</pages><issn>0770-3198</issn><eissn>1434-9949</eissn><abstract>Objectives
To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes.
Methods
The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols.
Results
A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients’ adherence to therapy was significantly (
p
< 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (
p
< 0.01).
Conclusions
The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes.
Key Points
• This work represents the second generation of shared decision-making tools.
• The developed tool adopts an interactive style and enhances critical thinking, giving the patients the facility of making their own decision regarding their management.
• The work gives an example of core domain set of outcomes which can be used for shared decision-making interventions.</abstract><cop>London</cop><pub>Springer London</pub><pmid>31327085</pmid><doi>10.1007/s10067-019-04687-y</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0002-4543-692X</orcidid></addata></record> |
| fulltext | fulltext |
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| ispartof | Clinical rheumatology, 2019-11, Vol.38 (11), p.3217-3225 |
| issn | 0770-3198 1434-9949 |
| language | eng |
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| source | MEDLINE; Springer Nature - Complete Springer Journals |
| subjects | Adolescent Arthritis Arthritis, Juvenile Child Children Clinical decision making Clinical outcomes Critical thinking Decision making Decision Making, Shared Female Humans International standards Male Medication Adherence - statistics & numerical data Medicine Medicine & Public Health Original Article Patient compliance Patient Education as Topic Patient Reported Outcome Measures Patients Rheumatology |
| title | Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking |
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