Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey
Background There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited. Objectives To improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities se...
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| Veröffentlicht in: | Health expectations : an international journal of public participation in health care and health policy 2017-12, Vol.20 (6), p.1421-1427 |
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| container_title | Health expectations : an international journal of public participation in health care and health policy |
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| creator | Hubbard, Gill Taylor, Claire Beeken, Becca Campbell, Anna Gracey, Jackie Grimmett, Chloe Fisher, Abi Ozakinci, Gozde Slater, Sarah Gorely, Trish |
| description | Background
There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.
Objectives
To improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities set by patients.
Design and Methods
Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority.
Participants
People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.
Analysis
Distributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann–Whitney U‐test or the Kruskal–Wallis test depending on the number of groups.
Results
In total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma.
Conclusion
People with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma‐related concerns that impact quality of life. |
| doi_str_mv | 10.1111/hex.12585 |
| format | Article |
| fullrecord | <record><control><sourceid>gale_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_5689233</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><galeid>A710777485</galeid><sourcerecordid>A710777485</sourcerecordid><originalsourceid>FETCH-LOGICAL-c5385-4b363d210a2f41bb8431196dad5644579deaa6be7971979829a93ef29353a0ae3</originalsourceid><addsrcrecordid>eNp9ks1u1DAQxyMEoqVw4AWQJS5w2K0_4i8OlVZVoUiVkBBI3CwnmXRdOXFqJ1v2xiPwjDwJXrIUigD7YMvzm_94Rv-ieErwkuR1vIbPS0K54veKQ8KEXkhB-f39XXDCDopHKV1hTCRT8mFxQJWQXGB1WEzvIYGN9RoN0YXoRgcJ2SpMI0pj6Oy3L18jeDtCg64n6924RaFF3rWA2hg6NK4BDRDTAPXoNrALDhAGD-jGjWtkZ5VXaIUG50MWneIGto-LB631CZ7sz6Pi4-uzD6fni4t3b96eri4WNWeKL8qKCdZQgi1tS1JVqmSEaNHYhouy5FI3YK2oQGpJtNSKaqsZtFQzziy2wI6Kk1l3mKoOmhr6MVpvcqudjVsTrDN3I71bm8uwMVwoTRnLAi_2AjFcT5BG07lUg_e2hzAlQzThSpUU84w-_wO9ClPsc3uGUo2pEFrg_1G5s1IQRpj8RV1aD8b1bci_q3elzUoSLKUs1a7i8i9U3g10rg49tC6_30l4OSfUMaQUob2dBMFm5ySTnWR-OCmzz34f3S350zoZOJ6Bm1xl-28lc372aZb8Dkd90ng</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2290266960</pqid></control><display><type>article</type><title>Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>MEDLINE</source><source>Wiley Online Library Open Access</source><source>DOAJ Directory of Open Access Journals</source><source>Wiley Online Library Journals Frontfile Complete</source><source>Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals</source><source>PubMed Central</source><creator>Hubbard, Gill ; Taylor, Claire ; Beeken, Becca ; Campbell, Anna ; Gracey, Jackie ; Grimmett, Chloe ; Fisher, Abi ; Ozakinci, Gozde ; Slater, Sarah ; Gorely, Trish</creator><creatorcontrib>Hubbard, Gill ; Taylor, Claire ; Beeken, Becca ; Campbell, Anna ; Gracey, Jackie ; Grimmett, Chloe ; Fisher, Abi ; Ozakinci, Gozde ; Slater, Sarah ; Gorely, Trish</creatorcontrib><description>Background
There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.
Objectives
To improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities set by patients.
Design and Methods
Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority.
Participants
People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.
Analysis
Distributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann–Whitney U‐test or the Kruskal–Wallis test depending on the number of groups.
Results
In total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma.
Conclusion
People with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma‐related concerns that impact quality of life.</description><identifier>ISSN: 1369-6513</identifier><identifier>EISSN: 1369-7625</identifier><identifier>DOI: 10.1111/hex.12585</identifier><identifier>PMID: 28675608</identifier><language>eng</language><publisher>England: John Wiley & Sons, Inc</publisher><subject>Adolescent ; Adult ; Aged ; Aged, 80 and over ; Cancer ; Care and treatment ; Charities ; colostomy ; Consent ; Evidence based research ; Evidence-based medicine ; Evidence-Based Practice ; Female ; Females ; Hernia ; Hernias ; Humans ; Male ; Males ; Medical research ; Medicine, Experimental ; Middle Aged ; Original Research Paper ; Original Research Papers ; Ostomy ; Patients ; Pilot Projects ; Polls & surveys ; Priorities ; Prioritizing ; public/patient involvement ; Quality of life ; Quality of Life - psychology ; Questionnaires ; Ratings & rankings ; research priorities ; Researchers ; Sex Factors ; Social networks ; Statistical analysis ; stoma ; Surgical Stomas - adverse effects ; Surveys ; Surveys and Questionnaires ; Time Factors ; United Kingdom ; urostomy</subject><ispartof>Health expectations : an international journal of public participation in health care and health policy, 2017-12, Vol.20 (6), p.1421-1427</ispartof><rights>2017 The Authors Health Expectations Published by John Wiley & Sons Ltd</rights><rights>2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.</rights><rights>COPYRIGHT 2017 John Wiley & Sons, Inc.</rights><rights>Copyright © 2017 John Wiley & Sons Ltd</rights><rights>2017. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5385-4b363d210a2f41bb8431196dad5644579deaa6be7971979829a93ef29353a0ae3</citedby><cites>FETCH-LOGICAL-c5385-4b363d210a2f41bb8431196dad5644579deaa6be7971979829a93ef29353a0ae3</cites><orcidid>0000-0003-2165-5770</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5689233/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5689233/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,1411,11541,12825,27901,27902,30976,45550,45551,46027,46451,53766,53768</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/28675608$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hubbard, Gill</creatorcontrib><creatorcontrib>Taylor, Claire</creatorcontrib><creatorcontrib>Beeken, Becca</creatorcontrib><creatorcontrib>Campbell, Anna</creatorcontrib><creatorcontrib>Gracey, Jackie</creatorcontrib><creatorcontrib>Grimmett, Chloe</creatorcontrib><creatorcontrib>Fisher, Abi</creatorcontrib><creatorcontrib>Ozakinci, Gozde</creatorcontrib><creatorcontrib>Slater, Sarah</creatorcontrib><creatorcontrib>Gorely, Trish</creatorcontrib><title>Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey</title><title>Health expectations : an international journal of public participation in health care and health policy</title><addtitle>Health Expect</addtitle><description>Background
There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.
Objectives
To improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities set by patients.
Design and Methods
Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority.
Participants
People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.
Analysis
Distributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann–Whitney U‐test or the Kruskal–Wallis test depending on the number of groups.
Results
In total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma.
Conclusion
People with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma‐related concerns that impact quality of life.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Cancer</subject><subject>Care and treatment</subject><subject>Charities</subject><subject>colostomy</subject><subject>Consent</subject><subject>Evidence based research</subject><subject>Evidence-based medicine</subject><subject>Evidence-Based Practice</subject><subject>Female</subject><subject>Females</subject><subject>Hernia</subject><subject>Hernias</subject><subject>Humans</subject><subject>Male</subject><subject>Males</subject><subject>Medical research</subject><subject>Medicine, Experimental</subject><subject>Middle Aged</subject><subject>Original Research Paper</subject><subject>Original Research Papers</subject><subject>Ostomy</subject><subject>Patients</subject><subject>Pilot Projects</subject><subject>Polls & surveys</subject><subject>Priorities</subject><subject>Prioritizing</subject><subject>public/patient involvement</subject><subject>Quality of life</subject><subject>Quality of Life - psychology</subject><subject>Questionnaires</subject><subject>Ratings & rankings</subject><subject>research priorities</subject><subject>Researchers</subject><subject>Sex Factors</subject><subject>Social networks</subject><subject>Statistical analysis</subject><subject>stoma</subject><subject>Surgical Stomas - adverse effects</subject><subject>Surveys</subject><subject>Surveys and Questionnaires</subject><subject>Time Factors</subject><subject>United Kingdom</subject><subject>urostomy</subject><issn>1369-6513</issn><issn>1369-7625</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2017</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><sourceid>BENPR</sourceid><recordid>eNp9ks1u1DAQxyMEoqVw4AWQJS5w2K0_4i8OlVZVoUiVkBBI3CwnmXRdOXFqJ1v2xiPwjDwJXrIUigD7YMvzm_94Rv-ieErwkuR1vIbPS0K54veKQ8KEXkhB-f39XXDCDopHKV1hTCRT8mFxQJWQXGB1WEzvIYGN9RoN0YXoRgcJ2SpMI0pj6Oy3L18jeDtCg64n6924RaFF3rWA2hg6NK4BDRDTAPXoNrALDhAGD-jGjWtkZ5VXaIUG50MWneIGto-LB631CZ7sz6Pi4-uzD6fni4t3b96eri4WNWeKL8qKCdZQgi1tS1JVqmSEaNHYhouy5FI3YK2oQGpJtNSKaqsZtFQzziy2wI6Kk1l3mKoOmhr6MVpvcqudjVsTrDN3I71bm8uwMVwoTRnLAi_2AjFcT5BG07lUg_e2hzAlQzThSpUU84w-_wO9ClPsc3uGUo2pEFrg_1G5s1IQRpj8RV1aD8b1bci_q3elzUoSLKUs1a7i8i9U3g10rg49tC6_30l4OSfUMaQUob2dBMFm5ySTnWR-OCmzz34f3S350zoZOJ6Bm1xl-28lc372aZb8Dkd90ng</recordid><startdate>201712</startdate><enddate>201712</enddate><creator>Hubbard, Gill</creator><creator>Taylor, Claire</creator><creator>Beeken, Becca</creator><creator>Campbell, Anna</creator><creator>Gracey, Jackie</creator><creator>Grimmett, Chloe</creator><creator>Fisher, Abi</creator><creator>Ozakinci, Gozde</creator><creator>Slater, Sarah</creator><creator>Gorely, Trish</creator><general>John Wiley & Sons, Inc</general><general>John Wiley and Sons Inc</general><scope>24P</scope><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>7QJ</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>3V.</scope><scope>7RV</scope><scope>7T2</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AEUYN</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>C1K</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-2165-5770</orcidid></search><sort><creationdate>201712</creationdate><title>Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey</title><author>Hubbard, Gill ; Taylor, Claire ; Beeken, Becca ; Campbell, Anna ; Gracey, Jackie ; Grimmett, Chloe ; Fisher, Abi ; Ozakinci, Gozde ; Slater, Sarah ; Gorely, Trish</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5385-4b363d210a2f41bb8431196dad5644579deaa6be7971979829a93ef29353a0ae3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2017</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Cancer</topic><topic>Care and treatment</topic><topic>Charities</topic><topic>colostomy</topic><topic>Consent</topic><topic>Evidence based research</topic><topic>Evidence-based medicine</topic><topic>Evidence-Based Practice</topic><topic>Female</topic><topic>Females</topic><topic>Hernia</topic><topic>Hernias</topic><topic>Humans</topic><topic>Male</topic><topic>Males</topic><topic>Medical research</topic><topic>Medicine, Experimental</topic><topic>Middle Aged</topic><topic>Original Research Paper</topic><topic>Original Research Papers</topic><topic>Ostomy</topic><topic>Patients</topic><topic>Pilot Projects</topic><topic>Polls & surveys</topic><topic>Priorities</topic><topic>Prioritizing</topic><topic>public/patient involvement</topic><topic>Quality of life</topic><topic>Quality of Life - psychology</topic><topic>Questionnaires</topic><topic>Ratings & rankings</topic><topic>research priorities</topic><topic>Researchers</topic><topic>Sex Factors</topic><topic>Social networks</topic><topic>Statistical analysis</topic><topic>stoma</topic><topic>Surgical Stomas - adverse effects</topic><topic>Surveys</topic><topic>Surveys and Questionnaires</topic><topic>Time Factors</topic><topic>United Kingdom</topic><topic>urostomy</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Hubbard, Gill</creatorcontrib><creatorcontrib>Taylor, Claire</creatorcontrib><creatorcontrib>Beeken, Becca</creatorcontrib><creatorcontrib>Campbell, Anna</creatorcontrib><creatorcontrib>Gracey, Jackie</creatorcontrib><creatorcontrib>Grimmett, Chloe</creatorcontrib><creatorcontrib>Fisher, Abi</creatorcontrib><creatorcontrib>Ozakinci, Gozde</creatorcontrib><creatorcontrib>Slater, Sarah</creatorcontrib><creatorcontrib>Gorely, Trish</creatorcontrib><collection>Wiley Online Library Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest Central (Corporate)</collection><collection>Proquest Nursing & Allied Health Source</collection><collection>Health and Safety Science Abstracts (Full archive)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Public Health Database</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 One Sustainability</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>Environmental Sciences and Pollution Management</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>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Publicly Available Content 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><collection>PubMed Central (Full Participant titles)</collection><jtitle>Health expectations : an international journal of public participation in health care and health policy</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hubbard, Gill</au><au>Taylor, Claire</au><au>Beeken, Becca</au><au>Campbell, Anna</au><au>Gracey, Jackie</au><au>Grimmett, Chloe</au><au>Fisher, Abi</au><au>Ozakinci, Gozde</au><au>Slater, Sarah</au><au>Gorely, Trish</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey</atitle><jtitle>Health expectations : an international journal of public participation in health care and health policy</jtitle><addtitle>Health Expect</addtitle><date>2017-12</date><risdate>2017</risdate><volume>20</volume><issue>6</issue><spage>1421</spage><epage>1427</epage><pages>1421-1427</pages><issn>1369-6513</issn><eissn>1369-7625</eissn><abstract>Background
There is a recognized need to include patients in setting research priorities. Research priorities identified by people with a stoma are rarely elicited.
Objectives
To improve the quality of life of people with a stoma through use of evidence‐based practice based on research priorities set by patients.
Design and Methods
Online pilot survey publicized in 2016 via United Kingdom stoma charities. People ranked nine stoma‐related quality of life topics in order of research priority.
Participants
People 16 years of age and over who currently have or have had a stoma for treatment for any medical condition.
Analysis
Distributions of the priority scores for each of the nine research topics were examined. Group differences were explored using either the Mann–Whitney U‐test or the Kruskal–Wallis test depending on the number of groups.
Results
In total, 225 people completed the survey. The most important research priority was pouch leak problems and stoma bag/appliance problems followed by hernia risk. There were statistically significant differences in ranking research priorities between males and females, age, underlying disease that led to a stoma, stoma type and length of time with a stoma.
Conclusion
People with a stoma are willing to engage in and set research priorities. The results should contribute towards future research about setting the research agenda for the study of stoma‐related concerns that impact quality of life.</abstract><cop>England</cop><pub>John Wiley & Sons, Inc</pub><pmid>28675608</pmid><doi>10.1111/hex.12585</doi><tpages>7</tpages><orcidid>https://orcid.org/0000-0003-2165-5770</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1369-6513 |
| ispartof | Health expectations : an international journal of public participation in health care and health policy, 2017-12, Vol.20 (6), p.1421-1427 |
| issn | 1369-6513 1369-7625 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_5689233 |
| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; Wiley Online Library Open Access; DOAJ Directory of Open Access Journals; Wiley Online Library Journals Frontfile Complete; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central |
| subjects | Adolescent Adult Aged Aged, 80 and over Cancer Care and treatment Charities colostomy Consent Evidence based research Evidence-based medicine Evidence-Based Practice Female Females Hernia Hernias Humans Male Males Medical research Medicine, Experimental Middle Aged Original Research Paper Original Research Papers Ostomy Patients Pilot Projects Polls & surveys Priorities Prioritizing public/patient involvement Quality of life Quality of Life - psychology Questionnaires Ratings & rankings research priorities Researchers Sex Factors Social networks Statistical analysis stoma Surgical Stomas - adverse effects Surveys Surveys and Questionnaires Time Factors United Kingdom urostomy |
| title | Research priorities about stoma‐related quality of life from the perspective of people with a stoma: A pilot survey |
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