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      End-of-life experience for older adults in Ireland: results from the Irish longitudinal study on ageing (TILDA)

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          Abstract

          Background

          End-of-life experience is a subject of significant policy interest. National longitudinal studies offer valuable opportunities to examine individual-level experiences. Ireland is an international leader in palliative and end-of-life care rankings. We aimed to describe the prevalence of modifiable problems (pain, falls, depression) in Ireland, and to evaluate associations with place of death, healthcare utilisation, and formal and informal costs in the last year of life.

          Methods

          The Irish Longitudinal Study on Ageing (TILDA) is a nationally representative sample of over-50-year-olds, recruited in Wave 1 (2009–2010) and participating in biannual assessment. In the event of a participant’s death, TILDA approaches a close relative or friend to complete a voluntary interview on end-of-life experience. We evaluated associations using multinomial logistic regression for place of death, ordinary least squares for utilisation, and generalised linear models for costs. We identified 14 independent variables for regressions from a rich set of potential predictors. Of 516 confirmed deaths between Waves 1 and 3, the analytic sample contained 375 (73%) decedents for whom proxies completed an interview.

          Results

          There was high prevalence of modifiable problems pain (50%), depression (45%) and falls (41%). Those with a cancer diagnosis were more likely to die at home (relative risk ratio: 2.5; 95% CI: 1.3–4.8) or in an inpatient hospice (10.2; 2.7–39.2) than those without. Place of death and patterns of health care use were determined not only by clinical need, but other factors including age and household structure. Unpaid care accounted for 37% of all care received but access to this care, as well as place of death, may be adversely affected by living alone or in a rural area. Deficits in unpaid care are not balanced by higher formal care use.

          Conclusions

          Despite Ireland’s well-established palliative care services, clinical need is not the sole determinant of end-of-life experience. Cancer diagnosis and access to family supports were additional key determinants. Future policy reforms should revisit persistent inequities by diagnosis, which may be mitigated through comprehensive geriatric assessment in hospitals. Further consideration of policies to support unpaid carers is also warranted.

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          The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions

          Summary Background Serious life-threatening and life-limiting illnesses place an enormous burden on society and health systems. Understanding how this burden will evolve in the future is essential to inform policies that alleviate suffering and prevent health system weakening. We aimed to project the global burden of serious health-related suffering requiring palliative care until 2060 by world regions, age groups, and health conditions. Methods We projected the future burden of serious health-related suffering as defined by the Lancet Commission on Palliative Care and Pain Relief, by combining WHO mortality projections (2016–60) with estimates of physical and psychological symptom prevalence in 20 conditions most often associated with symptoms requiring palliative care. Projections were described in terms of absolute numbers and proportional change compared with the 2016 baseline data. Results were stratified by World Bank income regions and WHO geographical regions. Findings By 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016. 83% of these deaths will occur in low-income and middle-income countries. Serious health-related suffering will increase in all regions, with the largest proportional rise in low-income countries (155% increase between 2016 and 2060). Globally, serious health-related suffering will increase most rapidly among people aged 70 years or older (183% increase between 2016 and 2060). In absolute terms, it will be driven by rises in cancer deaths (16 million people, 109% increase between 2016 and 2060). The condition with the highest proportional increase in serious-related suffering will be dementia (6 million people, 264% increase between 2016 and 2060). Interpretation The burden of serious health-related suffering will almost double by 2060, with the fastest increases occurring in low-income countries, among older people, and people with dementia. Immediate global action to integrate palliative care into health systems is an ethical and economic imperative. Funding Research Challenge Fund, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London.
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            The logged dependent variable, heteroscedasticity, and the retransformation problem.

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              Goodness of Link Tests for Generalized Linear Models

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                Author and article information

                Contributors
                mayp2@tcd.ie
                loroe@tcd.ie
                christine.mcgarrigle@tcd.ie
                rkenny@tcd.ie
                normandc@tcd.ie
                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central (London )
                1472-6963
                14 February 2020
                14 February 2020
                2020
                : 20
                : 118
                Affiliations
                [1 ]ISNI 0000 0004 1936 9705, GRID grid.8217.c, Centre for Health Policy & Management, , Trinity College Dublin, ; 3-4 Foster Place, Dublin 2, Ireland
                [2 ]ISNI 0000 0004 1936 9705, GRID grid.8217.c, The Irish Longitudinal study on Ageing (TILDA), , Trinity College Dublin, ; Lincoln Gate, Dublin 2, Ireland
                [3 ]ISNI 0000 0004 0617 8280, GRID grid.416409.e, Mercer’s Institute for Successful Ageing, St James’s Hospital, ; Dublin 8, Ireland
                [4 ]ISNI 0000 0001 2322 6764, GRID grid.13097.3c, Cicely Saunders Institute for Palliative Care, Rehabilitation and Policy, King’s College London, ; Bessemer Road, London, SE5 9PJ UK
                Author information
                http://orcid.org/0000-0001-8501-6500
                Article
                4978
                10.1186/s12913-020-4978-0
                7023768
                32059722
                75ed81c4-3476-4208-8566-ca8f81b70bc0
                © The Author(s). 2020

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 17 January 2019
                : 11 February 2020
                Funding
                Funded by: The Atlantic Philanthropies
                Award ID: 24611
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Health & Social care
                end of life,ageing,longitudinal study,hospital,hospice,cancer,utilisation,policy
                Health & Social care
                end of life, ageing, longitudinal study, hospital, hospice, cancer, utilisation, policy

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