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Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care

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Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. / Calanzani, Natalia; Higginson, Irene J.; Koffman, Jonathan; Gomes, Barbara.

In: PL o S One , Vol. 11, No. 1, e0146134, 08.01.2016.

Research output: Contribution to journalArticle

Harvard

Calanzani, N, Higginson, IJ, Koffman, J & Gomes, B 2016, 'Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care', PL o S One , vol. 11, no. 1, e0146134. https://doi.org/10.1371/journal.pone.0146134

APA

Calanzani, N., Higginson, I. J., Koffman, J., & Gomes, B. (2016). Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. PL o S One , 11(1), [e0146134]. https://doi.org/10.1371/journal.pone.0146134

Vancouver

Calanzani N, Higginson IJ, Koffman J, Gomes B. Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. PL o S One . 2016 Jan 8;11(1). e0146134. https://doi.org/10.1371/journal.pone.0146134

Author

Calanzani, Natalia ; Higginson, Irene J. ; Koffman, Jonathan ; Gomes, Barbara. / Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care. In: PL o S One . 2016 ; Vol. 11, No. 1.

Bibtex Download

@article{b6a9663623874ce6a3ded6c1c18a1089,
title = "Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care",
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.METHODS: 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.FINDINGS: 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).CONCLUSIONS: 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.",
author = "Natalia Calanzani and Higginson, {Irene J.} and Jonathan Koffman and Barbara Gomes",
year = "2016",
month = jan,
day = "8",
doi = "10.1371/journal.pone.0146134",
language = "English",
volume = "11",
journal = "PL o S One ",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "1",

}

RIS (suitable for import to EndNote) Download

TY - JOUR

T1 - Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care

AU - Calanzani, Natalia

AU - Higginson, Irene J.

AU - Koffman, Jonathan

AU - Gomes, Barbara

PY - 2016/1/8

Y1 - 2016/1/8

N2 - 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.METHODS: 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.FINDINGS: 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).CONCLUSIONS: 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.

AB - 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.METHODS: 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.FINDINGS: 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).CONCLUSIONS: 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.

UR - http://www.scopus.com/inward/record.url?scp=84954341951&partnerID=8YFLogxK

U2 - 10.1371/journal.pone.0146134

DO - 10.1371/journal.pone.0146134

M3 - Article

C2 - 26745379

AN - SCOPUS:84954341951

VL - 11

JO - PL o S One

JF - PL o S One

SN - 1932-6203

IS - 1

M1 - e0146134

ER -

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