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{"title"=>"Factors associated with participation, active refusals and reasons for not taking part in a mortality followback survey evaluating endof-life care", "type"=>"journal", "authors"=>[{"first_name"=>"Natalia", "last_name"=>"Calanzani", "scopus_author_id"=>"55014469300"}, {"first_name"=>"Irene J.", "last_name"=>"Higginson", "scopus_author_id"=>"7006457362"}, {"first_name"=>"Jonathan", "last_name"=>"Koffman", "scopus_author_id"=>"7004234652"}, {"first_name"=>"Barbara", "last_name"=>"Gomes", "scopus_author_id"=>"11940857600"}], "year"=>2016, "source"=>"PLoS ONE", "identifiers"=>{"sgr"=>"84954341951", "pmid"=>"26745379", "isbn"=>"10.1371/journal.pone.0146134", "scopus"=>"2-s2.0-84954341951", "issn"=>"19326203", "pui"=>"607686336", "doi"=>"10.1371/journal.pone.0146134"}, "id"=>"bf82057f-24cb-30c8-a70c-3241e2772ae7", "abstract"=>"BACKGROUND: Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey.\\n\\nMETHODS: Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4-10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants.\\n\\nFINDINGS: The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52-8.00, ref: 20-49yrs) and female informants (AOR 1.70, 95%CI: 1.33-2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46-0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32-0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920).\\n\\nCONCLUSIONS: Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.", "link"=>"http://www.mendeley.com/research/factors-associated-participation-active-refusals-reasons-not-taking-part-mortality-followback-survey", "reader_count"=>19, "reader_count_by_academic_status"=>{"Unspecified"=>1, "Researcher"=>6, "Student > Ph. D. Student"=>3, "Student > Master"=>3, "Other"=>1, "Student > Bachelor"=>5}, "reader_count_by_user_role"=>{"Unspecified"=>1, "Researcher"=>6, "Student > Ph. D. Student"=>3, "Student > Master"=>3, "Other"=>1, "Student > Bachelor"=>5}, "reader_count_by_subject_area"=>{"Unspecified"=>2, "Nursing and Health Professions"=>4, "Agricultural and Biological Sciences"=>1, "Medicine and Dentistry"=>8, "Arts and Humanities"=>1, "Psychology"=>1, "Social Sciences"=>2}, "reader_count_by_subdiscipline"=>{"Medicine and Dentistry"=>{"Medicine and Dentistry"=>8}, "Social Sciences"=>{"Social Sciences"=>2}, "Psychology"=>{"Psychology"=>1}, "Agricultural and Biological Sciences"=>{"Agricultural and Biological Sciences"=>1}, "Nursing and Health Professions"=>{"Nursing and Health Professions"=>4}, "Unspecified"=>{"Unspecified"=>2}, "Arts and Humanities"=>{"Arts and Humanities"=>1}}, "reader_count_by_country"=>{"United Kingdom"=>1}, "group_count"=>1}

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• http://doi.org/10.1371/journal.pone.0184750
• http://doi.org/10.12968/ijpn.2016.22.11.534
• http://doi.org/10.1017/S1478951517000876
• http://doi.org/10.1093/jjco/hyx177
• http://doi.org/10.1097/j.pbj.0000000000000053
• http://doi.org/10.2512/jspm.12.131
• http://doi.org/10.1186/s12904-019-0464-z
• http://doi.org/10.1080/07481187.2018.1469054
• http://doi.org/10.1080/07481187.2018.1506835
• http://doi.org/10.1177/0269216318774995

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• {"id"=>"685755379050000384", "text"=>"Mortality followback surveys evaluate end of life care: who r we missing & why? Our NEW paper @PLOSONE https://t.co/aFCq6MRZBN #hpm #cancer", "created_at"=>"2016-01-09T09:29:57Z", "user"=>"B_Gomes_", "user_name"=>"Barbara Gomes", "user_profile_image"=>"http://pbs.twimg.com/profile_images/3644826438/4bb4f315e839ae51175f809c30ec929c_normal.jpeg"}
• {"id"=>"685760685461082112", "text"=>"RT @B_Gomes_: Mortality followback surveys evaluate end of life care: who r we missing & why? Our NEW paper @PLOSONE https://t.co/aFCq6MRZ…", "created_at"=>"2016-01-09T09:51:02Z", "user"=>"APMPostTweets", "user_name"=>"APM", "user_profile_image"=>"http://pbs.twimg.com/profile_images/555785569330946048/XdUUmqJI_normal.png"}
• {"id"=>"685916091386859525", "text"=>"RT @B_Gomes_: Mortality followback surveys evaluate end of life care: who r we missing & why? Our NEW paper @PLOSONE https://t.co/aFCq6MRZ…", "created_at"=>"2016-01-09T20:08:34Z", "user"=>"JoyWharton1", "user_name"=>"#hellomynameis Joy", "user_profile_image"=>"http://pbs.twimg.com/profile_images/641668251500412928/bsfB7bL9_normal.png"}
• {"id"=>"685984476309139457", "text"=>"RT @B_Gomes_: Mortality followback surveys evaluate end of life care: who r we missing & why? Our NEW paper @PLOSONE https://t.co/aFCq6MRZ…", "created_at"=>"2016-01-10T00:40:18Z", "user"=>"Aspo1962", "user_name"=>"Arthur Spoerner", "user_profile_image"=>"http://pbs.twimg.com/profile_images/378800000484814468/1e17cf7b00f8fba67b4b9aff2c3785af_normal.jpeg"}

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• {"files"=>["https://ndownloader.figshare.com/files/2624330"], "description"=>"<p>NHS, National Health Services.</p>", "links"=>[], "tags"=>["Active Refusals", "factor", "future questionnaire development", "205 nonparticipants.FindingsThe odds", "mortality followback surveys", "content analysis", "AORs 0.28", "participation", "study design improvements", "Factors Associated", "increase response rates", "Mortality Followback Survey", "1516 people", "ci", "hospital deaths", "death registrations", "Proxy characteristics", "refusal reasons"], "article_id"=>1635378, "categories"=>["Biological Sciences"], "users"=>["Natalia Calanzani", "Irene J Higginson", "Jonathan Koffman", "Barbara Gomes"], "doi"=>"https://dx.doi.org/10.1371/journal.pone.0146134.g001", "stats"=>{"downloads"=>0, "page_views"=>0, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_QUALYCARE_flow_diagram_/1635378", "title"=>"QUALYCARE flow diagram.", "pos_in_sequence"=>0, "defined_type"=>1, "published_date"=>"2016-01-18 15:12:40"}
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• {"files"=>["https://ndownloader.figshare.com/files/2624334", "https://ndownloader.figshare.com/files/2624335", "https://ndownloader.figshare.com/files/2624340"], "description"=>"<div><p>Background</p><p>Examination of factors independently associated with participation in mortality followback surveys is rare, even though these surveys are frequently used to evaluate end-of-life care. We aimed to identify factors associated with 1) participation versus non-participation and 2) provision of an active refusal versus a silent refusal; and systematically examine reasons for refusal in a population-based mortality followback survey.</p><p>Methods</p><p>Postal survey about the end-of-life care received by 1516 people who died from cancer (aged ≥18), identified through death registrations in London, England (response rate 39.3%). The informant of death (a relative in 95.3% of cases) was contacted 4–10 months after the patient died. We used multivariate logistic regression to identify factors associated with participation/active refusals and content analysis to examine refusal reasons provided by 205 nonparticipants.</p><p>Findings</p><p>The odds of partaking were higher for patients aged 90+ (AOR 3.48, 95%CI: 1.52–8.00, ref: 20–49yrs) and female informants (AOR 1.70, 95%CI: 1.33–2.16). Odds were lower for hospital deaths (AOR 0.62, 95%CI: 0.46–0.84, ref: home) and proxies other than spouses/partners (AORs 0.28 to 0.57). Proxies of patients born overseas were less likely to provide an active refusal (AOR 0.49; 95% CI: 0.32–0.77). Refusal reasons were often multidimensional, most commonly study-related (36.0%), proxy-related and grief-related (25.1% each). One limitation of this analysis is the large number of nonparticipants who did not provide reasons for refusal (715/920).</p><p>Conclusions</p><p>Our survey better reached proxies of older patients while those dying in hospitals were underrepresented. Proxy characteristics played a role, with higher participation from women and spouses/partners. More information is needed about the care received by underrepresented groups. Study design improvements may guide future questionnaire development and help develop strategies to increase response rates.</p></div>", "links"=>[], "tags"=>["Active Refusals", "factor", "future questionnaire development", "205 nonparticipants.FindingsThe odds", "mortality followback surveys", "content analysis", "AORs 0.28", "participation", "study design improvements", "Factors Associated", "increase response rates", "Mortality Followback Survey", "1516 people", "ci", "hospital deaths", "death registrations", "Proxy characteristics", "refusal reasons"], "article_id"=>1635382, "categories"=>["Biological Sciences"], "users"=>["Natalia Calanzani", "Irene J Higginson", "Jonathan Koffman", "Barbara Gomes"], "doi"=>["https://dx.doi.org/10.1371/journal.pone.0146134.s001", "https://dx.doi.org/10.1371/journal.pone.0146134.s002", "https://dx.doi.org/10.1371/journal.pone.0146134.s003"], "stats"=>{"downloads"=>0, "page_views"=>0, "likes"=>0}, "figshare_url"=>"https://figshare.com/articles/_Factors_Associated_with_Participation_Active_Refusals_and_Reasons_for_Not_Taking_Part_in_a_Mortality_Followback_Survey_Evaluating_End_of_Life_Care_/1635382", "title"=>"Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care", "pos_in_sequence"=>0, "defined_type"=>4, "published_date"=>"2016-01-18 15:12:41"}

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Relative Metric

{"start_date"=>"2016-01-01T00:00:00Z", "end_date"=>"2016-12-31T00:00:00Z", "subject_areas"=>[]}

F1000Prime