Factors associated with participation, active refusals and reasons for not taking part in a mortality followback survey evaluating end-of-life care

N. Calanzani, I.J. Higginson, J. Koffman, B. Gomes

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11 Citations (Scopus)


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.

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.

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).

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.
Original languageEnglish
JournalPloS ONE
Publication statusPublished - 8 Jan 2016

Bibliographical note

We are most grateful to the research participants and nonparticipants for taking part, considering taking part and providing reasons for not doing so. We thank Cicely Saunders International for their support. The study involved many collaborators, to whom we are indebted: Professor Paul McCrone and Dr Sue Hall at King’s College London, the Department of Palliative Care at the Royal Marsden Hospital (Dr Julia Riley, Meena Valambhia); Dr Elizabeth Davies and Peter Madden at the Thames Cancer Registry; Prof Mike Richards and Tessa Ing on behalf of the Department of Health; the ONS Health Analysis team (Myer Glickman, Peter Davies, Stephen Rowlands, Justine Pooley); the Islington, Westminster, Bromley, and Sutton & Merton Primary Care Trusts (Nada Lemic, Clare Henderson, Jacqui Lindo, Ursula Daee, end of life care groups, communication teams); the South East London Cancer Research Network (Kerry Hylands for data entry and governance advice). We thank the members of the Project Steering Group, patient/family representatives (Nell Dunn, Kirstie Newson), the International Scientific Expert Panel from Cicely Saunders International, Brenda Ferns, and external advisors (Dr Anita Patel, Professor Colin Murray Parkes, Dr Joana Cadima, Dr Massimo Costantini). We also thank local services who helped us understand better the findings, including staff at St. Christopher’s Hospice, the ELiPSe team, and colleagues at King’s College London (Jonathan Koffman, Emma Murphy, Fliss Murtagh, Marjolein Gysels, Claudia Bausewein, Thomas Osborne, Lucy Selman, Vera Sarmento, Gao Wei, amongst others). Thanks to the Calouste Gulbenkian Foundation for patience and encouragement. We are also grateful to Professors Gunn Grande and Christine Ingleton for their insightful comments.


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