Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care.
<h4>Background</h4>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-participatio...
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Public Library of Science (PLoS)
2016-01-01
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| Online Access: | https://doi.org/10.1371/journal.pone.0146134 |
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| author | Natalia Calanzani Irene J Higginson Jonathan Koffman Barbara Gomes |
| author_facet | Natalia Calanzani Irene J Higginson Jonathan Koffman Barbara Gomes |
| author_sort | Natalia Calanzani |
| collection | DOAJ |
| description | <h4>Background</h4>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.<h4>Methods</h4>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.<h4>Findings</h4>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).<h4>Conclusions</h4>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. |
| format | Article |
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| institution | OA Journals |
| issn | 1932-6203 |
| language | English |
| publishDate | 2016-01-01 |
| publisher | Public Library of Science (PLoS) |
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| series | PLoS ONE |
| spelling | doaj-art-90d30a798af74172b47b33654da2bfb32025-08-20T02:34:07ZengPublic Library of Science (PLoS)PLoS ONE1932-62032016-01-01111e014613410.1371/journal.pone.0146134Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care.Natalia CalanzaniIrene J HigginsonJonathan KoffmanBarbara Gomes<h4>Background</h4>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.<h4>Methods</h4>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.<h4>Findings</h4>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).<h4>Conclusions</h4>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.https://doi.org/10.1371/journal.pone.0146134 |
| spellingShingle | Natalia Calanzani Irene J Higginson Jonathan Koffman Barbara Gomes Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. PLoS ONE |
| title | Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. |
| title_full | Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. |
| title_fullStr | Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. |
| title_full_unstemmed | Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. |
| title_short | Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. |
| title_sort | factors associated with participation active refusals and reasons for not taking part in a mortality followback survey evaluating end of life care |
| url | https://doi.org/10.1371/journal.pone.0146134 |
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