Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias
This study aims to incorporate patients’ perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. I...
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| Veröffentlicht in: | Social science & medicine (1982) 2009-09, Vol.69 (6), p.920-925 |
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| container_title | Social science & medicine (1982) |
| container_volume | 69 |
| creator | Serrano-Aguilar, P Trujillo-Martin, M M Ramos-Goni, J M Mahtani-Chugani, V Perestelo-Perez, L La Paz, M Posada-De |
| description | This study aims to incorporate patients’ perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers.
The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life.
Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients’ needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians’ information needs and patients’ expectations. |
| doi_str_mv | 10.1016/j.socscimed.2009.07.005 |
| format | Article |
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The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life.
Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients’ needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians’ information needs and patients’ expectations.</description><identifier>ISSN: 0277-9536</identifier><identifier>ISSN: 1873-5347</identifier><identifier>EISSN: 1873-5347</identifier><identifier>DOI: 10.1016/j.socscimed.2009.07.005</identifier><identifier>PMID: 19647357</identifier><identifier>CODEN: SSCMAW</identifier><language>eng</language><publisher>England: Elsevier Ltd</publisher><subject>Activities of Daily Living ; Adult ; Ataxia ; Ataxia - therapy ; Attitude to Health ; Delphi method ; Delphi Technique ; Disease Progression ; Diseases ; Effectiveness ; Electronic Mail ; Evaluation ; Female ; Health Problems ; Humans ; Male ; Medical research ; Medical treatment ; Middle Aged ; Neurological disorders ; Participation ; Patient Participation ; Patients ; Rare diseases ; Rare diseases Ataxia Patient participation Systematic review Research Treatment outcome Spain ; Research Design ; Social participation ; Spain ; Surveys and Questionnaires ; Systematic review ; Systematic Reviews as Topic ; Treatment Methods ; Treatment Outcome</subject><ispartof>Social science & medicine (1982), 2009-09, Vol.69 (6), p.920-925</ispartof><rights>2009 Elsevier Ltd</rights><rights>Copyright Pergamon Press Inc. Sep 2009</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c556t-658430b2f9e7c992a186fd8276d29b4afe24acedec0d259c083ed57b181651e03</citedby><cites>FETCH-LOGICAL-c556t-658430b2f9e7c992a186fd8276d29b4afe24acedec0d259c083ed57b181651e03</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S0277953609004407$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,776,780,3537,3994,27901,27902,33751,33752,65534</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/19647357$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink><backlink>$$Uhttp://econpapers.repec.org/article/eeesocmed/v_3a69_3ay_3a2009_3ai_3a6_3ap_3a920-925.htm$$DView record in RePEc$$Hfree_for_read</backlink></links><search><creatorcontrib>Serrano-Aguilar, P</creatorcontrib><creatorcontrib>Trujillo-Martin, M M</creatorcontrib><creatorcontrib>Ramos-Goni, J M</creatorcontrib><creatorcontrib>Mahtani-Chugani, V</creatorcontrib><creatorcontrib>Perestelo-Perez, L</creatorcontrib><creatorcontrib>La Paz, M Posada-De</creatorcontrib><title>Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias</title><title>Social science & medicine (1982)</title><addtitle>Soc Sci Med</addtitle><description>This study aims to incorporate patients’ perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers.
The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life.
Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients’ needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians’ information needs and patients’ expectations.</description><subject>Activities of Daily Living</subject><subject>Adult</subject><subject>Ataxia</subject><subject>Ataxia - therapy</subject><subject>Attitude to Health</subject><subject>Delphi method</subject><subject>Delphi Technique</subject><subject>Disease Progression</subject><subject>Diseases</subject><subject>Effectiveness</subject><subject>Electronic Mail</subject><subject>Evaluation</subject><subject>Female</subject><subject>Health Problems</subject><subject>Humans</subject><subject>Male</subject><subject>Medical research</subject><subject>Medical treatment</subject><subject>Middle Aged</subject><subject>Neurological disorders</subject><subject>Participation</subject><subject>Patient Participation</subject><subject>Patients</subject><subject>Rare diseases</subject><subject>Rare diseases Ataxia Patient participation Systematic review Research Treatment outcome Spain</subject><subject>Research Design</subject><subject>Social participation</subject><subject>Spain</subject><subject>Surveys and Questionnaires</subject><subject>Systematic review</subject><subject>Systematic Reviews as Topic</subject><subject>Treatment Methods</subject><subject>Treatment Outcome</subject><issn>0277-9536</issn><issn>1873-5347</issn><issn>1873-5347</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2009</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>X2L</sourceid><sourceid>BHHNA</sourceid><recordid>eNqFks2O0zAUhSMEYsrAK4DFgl2Lf2I7ZleN-NVIsIC15To31FUTF9sp9BF4a24mVRdsuri2lfvdoxP7VNUrRleMMvV2t8rRZx96aFecUrOiekWpfFQtWKPFUopaP64WlGu9NFKom-pZzjtKKaONeFrdMKNqLaReVH-_uRJgKCQMx7g_Qj-fyRbcvmxJggwu-e07siY-DiWFzVhCHEiJxJF8ygV6FPAIHgP8JlNnCwS6DnwJRxggZxI7UhK4Mmln0sVEWviJreQmhLji_gSXn1dPOrfP8OK831Y_Prz_fvdpef_14-e79f3SS6nKUsmmFnTDOwPaG8Mda1TXNlyrlptN7TrgtfPQgqctl8bjD0Mr9YY1TEkGVNxWb2bdQ4q_RsjF9iF72O_dAHHMVmkljKz5dZCJGu9WXQep4IYKfRUUmjMu6OTx9X_gLo5pwGux2K8bwx7U9Az5FHNO0NlDCr1LJ8uonVJid_aSEjulxFJtMSU4-WWeTHAAfxkDAOQn-GiFUwaXE9bDpHBh-oZ1wDKcWsOl3ZYexV6evY6bafZi4pwxBNYzAPiqmJJk0RIM-EYhYUpsG8NVx_8AYEztVg</recordid><startdate>20090901</startdate><enddate>20090901</enddate><creator>Serrano-Aguilar, P</creator><creator>Trujillo-Martin, M M</creator><creator>Ramos-Goni, J M</creator><creator>Mahtani-Chugani, V</creator><creator>Perestelo-Perez, L</creator><creator>La Paz, M Posada-De</creator><general>Elsevier Ltd</general><general>Elsevier</general><general>Pergamon Press Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>DKI</scope><scope>X2L</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7U3</scope><scope>7U4</scope><scope>8BJ</scope><scope>BHHNA</scope><scope>DWI</scope><scope>FQK</scope><scope>JBE</scope><scope>K9.</scope><scope>WZK</scope><scope>7X8</scope></search><sort><creationdate>20090901</creationdate><title>Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias</title><author>Serrano-Aguilar, P ; Trujillo-Martin, M M ; Ramos-Goni, J M ; Mahtani-Chugani, V ; Perestelo-Perez, L ; La Paz, M Posada-De</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c556t-658430b2f9e7c992a186fd8276d29b4afe24acedec0d259c083ed57b181651e03</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2009</creationdate><topic>Activities of Daily Living</topic><topic>Adult</topic><topic>Ataxia</topic><topic>Ataxia - therapy</topic><topic>Attitude to Health</topic><topic>Delphi method</topic><topic>Delphi Technique</topic><topic>Disease Progression</topic><topic>Diseases</topic><topic>Effectiveness</topic><topic>Electronic Mail</topic><topic>Evaluation</topic><topic>Female</topic><topic>Health Problems</topic><topic>Humans</topic><topic>Male</topic><topic>Medical research</topic><topic>Medical treatment</topic><topic>Middle Aged</topic><topic>Neurological disorders</topic><topic>Participation</topic><topic>Patient Participation</topic><topic>Patients</topic><topic>Rare diseases</topic><topic>Rare diseases Ataxia Patient participation Systematic review Research Treatment outcome Spain</topic><topic>Research Design</topic><topic>Social participation</topic><topic>Spain</topic><topic>Surveys and Questionnaires</topic><topic>Systematic review</topic><topic>Systematic Reviews as Topic</topic><topic>Treatment Methods</topic><topic>Treatment Outcome</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Serrano-Aguilar, P</creatorcontrib><creatorcontrib>Trujillo-Martin, M M</creatorcontrib><creatorcontrib>Ramos-Goni, J M</creatorcontrib><creatorcontrib>Mahtani-Chugani, V</creatorcontrib><creatorcontrib>Perestelo-Perez, L</creatorcontrib><creatorcontrib>La Paz, M Posada-De</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>RePEc IDEAS</collection><collection>RePEc</collection><collection>CrossRef</collection><collection>Social Services Abstracts</collection><collection>Sociological Abstracts (pre-2017)</collection><collection>International Bibliography of the Social Sciences (IBSS)</collection><collection>Sociological Abstracts</collection><collection>Sociological Abstracts</collection><collection>International Bibliography of the Social Sciences</collection><collection>International Bibliography of the Social Sciences</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Sociological Abstracts (Ovid)</collection><collection>MEDLINE - Academic</collection><jtitle>Social science & medicine (1982)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Serrano-Aguilar, P</au><au>Trujillo-Martin, M M</au><au>Ramos-Goni, J M</au><au>Mahtani-Chugani, V</au><au>Perestelo-Perez, L</au><au>La Paz, M Posada-De</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias</atitle><jtitle>Social science & medicine (1982)</jtitle><addtitle>Soc Sci Med</addtitle><date>2009-09-01</date><risdate>2009</risdate><volume>69</volume><issue>6</issue><spage>920</spage><epage>925</epage><pages>920-925</pages><issn>0277-9536</issn><issn>1873-5347</issn><eissn>1873-5347</eissn><coden>SSCMAW</coden><abstract>This study aims to incorporate patients’ perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers.
The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life.
Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients’ needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians’ information needs and patients’ expectations.</abstract><cop>England</cop><pub>Elsevier Ltd</pub><pmid>19647357</pmid><doi>10.1016/j.socscimed.2009.07.005</doi><tpages>6</tpages></addata></record> |
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| ispartof | Social science & medicine (1982), 2009-09, Vol.69 (6), p.920-925 |
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| subjects | Activities of Daily Living Adult Ataxia Ataxia - therapy Attitude to Health Delphi method Delphi Technique Disease Progression Diseases Effectiveness Electronic Mail Evaluation Female Health Problems Humans Male Medical research Medical treatment Middle Aged Neurological disorders Participation Patient Participation Patients Rare diseases Rare diseases Ataxia Patient participation Systematic review Research Treatment outcome Spain Research Design Social participation Spain Surveys and Questionnaires Systematic review Systematic Reviews as Topic Treatment Methods Treatment Outcome |
| title | Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias |
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