ArticlePloS one2016
Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-of-Life Care.
Article in PloS one, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Caregiving burden, receipt of palliative care, and the use of bereavement support: secondary analysis of population-based data.BMC palliative care · 2025Article
- Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries.The oncologist · 2021Article
- Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives.Palliative medicine · 2021Article
- Dying in acute hospitals: voices of bereaved relatives.BMC palliative care · 2019Article
- What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach.Palliative medicine · 2018Article
- Bereavement support for family caregivers: The gap between guidelines and practice in palliative care.PloS one · 2017Article
- Husbands' and wives' discordant self-reports on couple-level variables: implications for data analysis.Porto biomedical journalArticle
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Authors and funding
4 authors.
Funding
Abstract
backgroundExamination 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.
methodsPostal 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.
findingsThe 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).
conclusionsOur 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.
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