OP0301-PARE Active Involvement of Patients in Health Research: Development and Evaluation of A Care Booklet for Patients with Rheumatoid Arthritis

Background The involvement of patients in health research is increasingly accepted and promoted, as a significant aspect of ensuring the development of high quality, relevant and necessary research. In line with this development, a number of representatives from regional associations for patients wi...

Ausführliche Beschreibung

Gespeichert in:
Bibliographische Detailangaben
Veröffentlicht in:Annals of the rheumatic diseases 2014-06, Vol.73 (Suppl 2), p.175-176
Hauptverfasser: Kaarls-Ohms, B.M., Claassen, A.A., Vooijs, J., Willemsen-de Mey, G.E., Peters, A., Meesters, J.J., Pellegrom, S., Vliet Vlieland, T.P., van den Ende, C.H.
Format: Artikel
Sprache:eng
Online-Zugang:Volltext
Tags: Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
container_end_page 176
container_issue Suppl 2
container_start_page 175
container_title Annals of the rheumatic diseases
container_volume 73
creator Kaarls-Ohms, B.M.
Claassen, A.A.
Vooijs, J.
Willemsen-de Mey, G.E.
Peters, A.
Meesters, J.J.
Pellegrom, S.
Vliet Vlieland, T.P.
van den Ende, C.H.
description Background The involvement of patients in health research is increasingly accepted and promoted, as a significant aspect of ensuring the development of high quality, relevant and necessary research. In line with this development, a number of representatives from regional associations for patients with rheumatic diseases in The Netherlands expressed their need for a self-management tool. Patients with rheumatoid arthritis (RA) deal with multiple treatments and healthcare providers during the course of their disease. A care booklet can support effective self-management by providing information and tools to enhance their active participation in the process of care. Objectives The aim of this project was, by means of a joint endeavour including patients, researchers and health care providers to systematically develop a care booklet, to support RA patients in coping with their disease and treatment. Methods The “RA Care Booklet” was developed in multiple stages, which included: a. determining objectives and functionalities within a project team of researchers and patients; b. professional photography, graphic design and text editing; c. composing draft versions; and d. consultation with stakeholders about the initial set up and draft versions. For the consultation 10 patients, 4 rheumatologists and 5 clinical nurse specialists were asked in multiple rounds for written feedback. Results The following objectives were determined: 1. Providing a source of information on RA and self-management of RA and 2. Providing tools for self-management. The functionalities of the latter were: recording of current medication, medical history and health care providers, monitoring disease activity and symptoms, points to consider for upcoming consultations with health care providers and goal setting. Given these requirements, a first draft of the “RA Care Booklet” was developed, consisting of two parts: the “RA Care Booklet” and the “RA Care Pass”. Photographs, graphic design and text editing for the booklet and pass were executed by professionals, with consultation of the project team. Stakeholders were consulted about multiple draft versions. Adjustments in text and graphics led to a final version of the “RA Care Booklet”. The “RA Care Booklet” provides information about RA, living with RA and self-management of RA. In the “RA Care Pass” patients can describe personal information about their disease and treatment. A systematic evaluation of the use and usability of the “RA care
doi_str_mv 10.1136/annrheumdis-2014-eular.2392
format Article
fullrecord <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_journals_1777974649</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>4008681931</sourcerecordid><originalsourceid>FETCH-LOGICAL-b1279-88a5d7d3c66e1d70e68e417876cca121fa3558013f8c272d7307f41463188bba3</originalsourceid><addsrcrecordid>eNqVkd1KwzAYhoMoOKf3EPC4mjRdkupRnVMHA4foccjaryyza2aSVjzzxDvwCr0S203QU4_yw_u8X8iD0CklZ5Qyfq7r2i2hWRfGRzGhSQRNpd1ZzNJ4Dw1owmV3zck-GhBCWJSkXByiI-9X3ZFIKgfo835OGKHRPHuYfL1_ZHkwLeBp3dqqhTXUAdsSz3Uw3dZjU-M70FVY4gfwoF2-vMDX0EJlN9usrgs8aXXVdICtezTDY-0AX1n7XEHApXW_ba-mL-rfr4M1Bc5cWDoTjD9GB6WuPJz8rEP0dDN5HN9Fs_vb6TibRQsaizSSUo8KUbCcc6CFIMAlJFRIwfNc05iWmo1GklBWyjwWcSEYEWXS_QqjUi4Wmg3R6a534-xLAz6olW1c3Y1UVAiRioQnaZe63KVyZ713UKqNM2vt3hQlqteg_mhQvQa11aB6DR3Nd_RivfoX-A2JspS7</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>1777974649</pqid></control><display><type>article</type><title>OP0301-PARE Active Involvement of Patients in Health Research: Development and Evaluation of A Care Booklet for Patients with Rheumatoid Arthritis</title><source>BMJ Journals - NESLi2</source><creator>Kaarls-Ohms, B.M. ; Claassen, A.A. ; Vooijs, J. ; Willemsen-de Mey, G.E. ; Peters, A. ; Meesters, J.J. ; Pellegrom, S. ; Vliet Vlieland, T.P. ; van den Ende, C.H.</creator><creatorcontrib>Kaarls-Ohms, B.M. ; Claassen, A.A. ; Vooijs, J. ; Willemsen-de Mey, G.E. ; Peters, A. ; Meesters, J.J. ; Pellegrom, S. ; Vliet Vlieland, T.P. ; van den Ende, C.H.</creatorcontrib><description>Background The involvement of patients in health research is increasingly accepted and promoted, as a significant aspect of ensuring the development of high quality, relevant and necessary research. In line with this development, a number of representatives from regional associations for patients with rheumatic diseases in The Netherlands expressed their need for a self-management tool. Patients with rheumatoid arthritis (RA) deal with multiple treatments and healthcare providers during the course of their disease. A care booklet can support effective self-management by providing information and tools to enhance their active participation in the process of care. Objectives The aim of this project was, by means of a joint endeavour including patients, researchers and health care providers to systematically develop a care booklet, to support RA patients in coping with their disease and treatment. Methods The “RA Care Booklet” was developed in multiple stages, which included: a. determining objectives and functionalities within a project team of researchers and patients; b. professional photography, graphic design and text editing; c. composing draft versions; and d. consultation with stakeholders about the initial set up and draft versions. For the consultation 10 patients, 4 rheumatologists and 5 clinical nurse specialists were asked in multiple rounds for written feedback. Results The following objectives were determined: 1. Providing a source of information on RA and self-management of RA and 2. Providing tools for self-management. The functionalities of the latter were: recording of current medication, medical history and health care providers, monitoring disease activity and symptoms, points to consider for upcoming consultations with health care providers and goal setting. Given these requirements, a first draft of the “RA Care Booklet” was developed, consisting of two parts: the “RA Care Booklet” and the “RA Care Pass”. Photographs, graphic design and text editing for the booklet and pass were executed by professionals, with consultation of the project team. Stakeholders were consulted about multiple draft versions. Adjustments in text and graphics led to a final version of the “RA Care Booklet”. The “RA Care Booklet” provides information about RA, living with RA and self-management of RA. In the “RA Care Pass” patients can describe personal information about their disease and treatment. A systematic evaluation of the use and usability of the “RA care booklet” is being undertaken. Conclusions This project illustrates the added value of joint collaboration of patients, researchers and health care providers. The active involvement of patients in the initiation and execution of the project assured that the perspective of patients was optimally taken into account resulting in a care booklet tailored to the preferences and perceptions of RA patients about the disease and options of self-management. Acknowledgements This project was financially supported by the Dutch Arthritis Foundation (Reumafonds) Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.2392</description><identifier>ISSN: 0003-4967</identifier><identifier>EISSN: 1468-2060</identifier><identifier>DOI: 10.1136/annrheumdis-2014-eular.2392</identifier><identifier>CODEN: ARDIAO</identifier><language>eng</language><publisher>London: BMJ Publishing Group LTD</publisher><ispartof>Annals of the rheumatic diseases, 2014-06, Vol.73 (Suppl 2), p.175-176</ispartof><rights>2014, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions</rights><rights>Copyright: 2014 (c) 2014, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttp://ard.bmj.com/content/73/Suppl_2/175.3.full.pdf$$EPDF$$P50$$Gbmj$$H</linktopdf><linktohtml>$$Uhttp://ard.bmj.com/content/73/Suppl_2/175.3.full$$EHTML$$P50$$Gbmj$$H</linktohtml><link.rule.ids>114,115,315,781,785,3197,23576,27929,27930,77605,77636</link.rule.ids></links><search><creatorcontrib>Kaarls-Ohms, B.M.</creatorcontrib><creatorcontrib>Claassen, A.A.</creatorcontrib><creatorcontrib>Vooijs, J.</creatorcontrib><creatorcontrib>Willemsen-de Mey, G.E.</creatorcontrib><creatorcontrib>Peters, A.</creatorcontrib><creatorcontrib>Meesters, J.J.</creatorcontrib><creatorcontrib>Pellegrom, S.</creatorcontrib><creatorcontrib>Vliet Vlieland, T.P.</creatorcontrib><creatorcontrib>van den Ende, C.H.</creatorcontrib><title>OP0301-PARE Active Involvement of Patients in Health Research: Development and Evaluation of A Care Booklet for Patients with Rheumatoid Arthritis</title><title>Annals of the rheumatic diseases</title><description>Background The involvement of patients in health research is increasingly accepted and promoted, as a significant aspect of ensuring the development of high quality, relevant and necessary research. In line with this development, a number of representatives from regional associations for patients with rheumatic diseases in The Netherlands expressed their need for a self-management tool. Patients with rheumatoid arthritis (RA) deal with multiple treatments and healthcare providers during the course of their disease. A care booklet can support effective self-management by providing information and tools to enhance their active participation in the process of care. Objectives The aim of this project was, by means of a joint endeavour including patients, researchers and health care providers to systematically develop a care booklet, to support RA patients in coping with their disease and treatment. Methods The “RA Care Booklet” was developed in multiple stages, which included: a. determining objectives and functionalities within a project team of researchers and patients; b. professional photography, graphic design and text editing; c. composing draft versions; and d. consultation with stakeholders about the initial set up and draft versions. For the consultation 10 patients, 4 rheumatologists and 5 clinical nurse specialists were asked in multiple rounds for written feedback. Results The following objectives were determined: 1. Providing a source of information on RA and self-management of RA and 2. Providing tools for self-management. The functionalities of the latter were: recording of current medication, medical history and health care providers, monitoring disease activity and symptoms, points to consider for upcoming consultations with health care providers and goal setting. Given these requirements, a first draft of the “RA Care Booklet” was developed, consisting of two parts: the “RA Care Booklet” and the “RA Care Pass”. Photographs, graphic design and text editing for the booklet and pass were executed by professionals, with consultation of the project team. Stakeholders were consulted about multiple draft versions. Adjustments in text and graphics led to a final version of the “RA Care Booklet”. The “RA Care Booklet” provides information about RA, living with RA and self-management of RA. In the “RA Care Pass” patients can describe personal information about their disease and treatment. A systematic evaluation of the use and usability of the “RA care booklet” is being undertaken. Conclusions This project illustrates the added value of joint collaboration of patients, researchers and health care providers. The active involvement of patients in the initiation and execution of the project assured that the perspective of patients was optimally taken into account resulting in a care booklet tailored to the preferences and perceptions of RA patients about the disease and options of self-management. Acknowledgements This project was financially supported by the Dutch Arthritis Foundation (Reumafonds) Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.2392</description><issn>0003-4967</issn><issn>1468-2060</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><recordid>eNqVkd1KwzAYhoMoOKf3EPC4mjRdkupRnVMHA4foccjaryyza2aSVjzzxDvwCr0S203QU4_yw_u8X8iD0CklZ5Qyfq7r2i2hWRfGRzGhSQRNpd1ZzNJ4Dw1owmV3zck-GhBCWJSkXByiI-9X3ZFIKgfo835OGKHRPHuYfL1_ZHkwLeBp3dqqhTXUAdsSz3Uw3dZjU-M70FVY4gfwoF2-vMDX0EJlN9usrgs8aXXVdICtezTDY-0AX1n7XEHApXW_ba-mL-rfr4M1Bc5cWDoTjD9GB6WuPJz8rEP0dDN5HN9Fs_vb6TibRQsaizSSUo8KUbCcc6CFIMAlJFRIwfNc05iWmo1GklBWyjwWcSEYEWXS_QqjUi4Wmg3R6a534-xLAz6olW1c3Y1UVAiRioQnaZe63KVyZ713UKqNM2vt3hQlqteg_mhQvQa11aB6DR3Nd_RivfoX-A2JspS7</recordid><startdate>201406</startdate><enddate>201406</enddate><creator>Kaarls-Ohms, B.M.</creator><creator>Claassen, A.A.</creator><creator>Vooijs, J.</creator><creator>Willemsen-de Mey, G.E.</creator><creator>Peters, A.</creator><creator>Meesters, J.J.</creator><creator>Pellegrom, S.</creator><creator>Vliet Vlieland, T.P.</creator><creator>van den Ende, C.H.</creator><general>BMJ Publishing Group LTD</general><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88I</scope><scope>8AF</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>BTHHO</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>K9-</scope><scope>K9.</scope><scope>LK8</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2P</scope><scope>M7P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>Q9U</scope></search><sort><creationdate>201406</creationdate><title>OP0301-PARE Active Involvement of Patients in Health Research: Development and Evaluation of A Care Booklet for Patients with Rheumatoid Arthritis</title><author>Kaarls-Ohms, B.M. ; Claassen, A.A. ; Vooijs, J. ; Willemsen-de Mey, G.E. ; Peters, A. ; Meesters, J.J. ; Pellegrom, S. ; Vliet Vlieland, T.P. ; van den Ende, C.H.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b1279-88a5d7d3c66e1d70e68e417876cca121fa3558013f8c272d7307f41463188bba3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Kaarls-Ohms, B.M.</creatorcontrib><creatorcontrib>Claassen, A.A.</creatorcontrib><creatorcontrib>Vooijs, J.</creatorcontrib><creatorcontrib>Willemsen-de Mey, G.E.</creatorcontrib><creatorcontrib>Peters, A.</creatorcontrib><creatorcontrib>Meesters, J.J.</creatorcontrib><creatorcontrib>Pellegrom, S.</creatorcontrib><creatorcontrib>Vliet Vlieland, T.P.</creatorcontrib><creatorcontrib>van den Ende, C.H.</creatorcontrib><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Health &amp; Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Science Database (Alumni Edition)</collection><collection>STEM Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science 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 Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>BMJ Journals</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>Consumer Health Database (Alumni Edition)</collection><collection>ProQuest Health &amp; Medical Complete (Alumni)</collection><collection>ProQuest Biological Science Collection</collection><collection>Consumer Health Database</collection><collection>Health &amp; Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Science Database</collection><collection>Biological Science 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>ProQuest Central Basic</collection><jtitle>Annals of the rheumatic diseases</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Kaarls-Ohms, B.M.</au><au>Claassen, A.A.</au><au>Vooijs, J.</au><au>Willemsen-de Mey, G.E.</au><au>Peters, A.</au><au>Meesters, J.J.</au><au>Pellegrom, S.</au><au>Vliet Vlieland, T.P.</au><au>van den Ende, C.H.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>OP0301-PARE Active Involvement of Patients in Health Research: Development and Evaluation of A Care Booklet for Patients with Rheumatoid Arthritis</atitle><jtitle>Annals of the rheumatic diseases</jtitle><date>2014-06</date><risdate>2014</risdate><volume>73</volume><issue>Suppl 2</issue><spage>175</spage><epage>176</epage><pages>175-176</pages><issn>0003-4967</issn><eissn>1468-2060</eissn><coden>ARDIAO</coden><abstract>Background The involvement of patients in health research is increasingly accepted and promoted, as a significant aspect of ensuring the development of high quality, relevant and necessary research. In line with this development, a number of representatives from regional associations for patients with rheumatic diseases in The Netherlands expressed their need for a self-management tool. Patients with rheumatoid arthritis (RA) deal with multiple treatments and healthcare providers during the course of their disease. A care booklet can support effective self-management by providing information and tools to enhance their active participation in the process of care. Objectives The aim of this project was, by means of a joint endeavour including patients, researchers and health care providers to systematically develop a care booklet, to support RA patients in coping with their disease and treatment. Methods The “RA Care Booklet” was developed in multiple stages, which included: a. determining objectives and functionalities within a project team of researchers and patients; b. professional photography, graphic design and text editing; c. composing draft versions; and d. consultation with stakeholders about the initial set up and draft versions. For the consultation 10 patients, 4 rheumatologists and 5 clinical nurse specialists were asked in multiple rounds for written feedback. Results The following objectives were determined: 1. Providing a source of information on RA and self-management of RA and 2. Providing tools for self-management. The functionalities of the latter were: recording of current medication, medical history and health care providers, monitoring disease activity and symptoms, points to consider for upcoming consultations with health care providers and goal setting. Given these requirements, a first draft of the “RA Care Booklet” was developed, consisting of two parts: the “RA Care Booklet” and the “RA Care Pass”. Photographs, graphic design and text editing for the booklet and pass were executed by professionals, with consultation of the project team. Stakeholders were consulted about multiple draft versions. Adjustments in text and graphics led to a final version of the “RA Care Booklet”. The “RA Care Booklet” provides information about RA, living with RA and self-management of RA. In the “RA Care Pass” patients can describe personal information about their disease and treatment. A systematic evaluation of the use and usability of the “RA care booklet” is being undertaken. Conclusions This project illustrates the added value of joint collaboration of patients, researchers and health care providers. The active involvement of patients in the initiation and execution of the project assured that the perspective of patients was optimally taken into account resulting in a care booklet tailored to the preferences and perceptions of RA patients about the disease and options of self-management. Acknowledgements This project was financially supported by the Dutch Arthritis Foundation (Reumafonds) Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.2392</abstract><cop>London</cop><pub>BMJ Publishing Group LTD</pub><doi>10.1136/annrheumdis-2014-eular.2392</doi><tpages>2</tpages></addata></record>
fulltext fulltext
identifier ISSN: 0003-4967
ispartof Annals of the rheumatic diseases, 2014-06, Vol.73 (Suppl 2), p.175-176
issn 0003-4967
1468-2060
language eng
recordid cdi_proquest_journals_1777974649
source BMJ Journals - NESLi2
title OP0301-PARE Active Involvement of Patients in Health Research: Development and Evaluation of A Care Booklet for Patients with Rheumatoid Arthritis
url https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2024-12-14T16%3A52%3A23IST&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=OP0301-PARE%E2%80%85Active%20Involvement%20of%20Patients%20in%20Health%20Research:%20Development%20and%20Evaluation%20of%20A%20Care%20Booklet%20for%20Patients%20with%20Rheumatoid%20Arthritis&rft.jtitle=Annals%20of%20the%20rheumatic%20diseases&rft.au=Kaarls-Ohms,%20B.M.&rft.date=2014-06&rft.volume=73&rft.issue=Suppl%202&rft.spage=175&rft.epage=176&rft.pages=175-176&rft.issn=0003-4967&rft.eissn=1468-2060&rft.coden=ARDIAO&rft_id=info:doi/10.1136/annrheumdis-2014-eular.2392&rft_dat=%3Cproquest_cross%3E4008681931%3C/proquest_cross%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=1777974649&rft_id=info:pmid/&rfr_iscdi=true