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.
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 endof-life care. PLoS ONE, 11(1). https://doi.org/10.1371/journal.pone.0146134