Abstract number: J-02 Abstract type: Poster
The Transition from Paediatric to Adult Healthcare is Associated with Increases in Unplanned Hospital Visits for Young People with Life Limit- ing Conditions
Jarvis S.1
1University of York, Martin House Research Centre, Department of Health Sciences, York, United Kingdom
Background: There are concerns that children with life limiting condi- tions transitioning to adult healthcare can experience a lack of planning and continuity and, in the UK, coordination post-transfer is often by a general practitioner, who may have limited knowledge of the child and the condition. This may lead to increased unplanned hospital care, due to worse condition management and/or care seeking in a familiar hospi- tal environment.
Aims: To assess any association between being in adult compared to paediatric care and numbers of unplanned hospital visits - Accident and Emergency (A&E) department visits and Emergency Inpatient admissions.
Methods: Secondary data analysis. Healthcare records were requested persons in England aged 12-23 years from 2000-2018. Life limiting condi- tions were identified from recorded diagnoses. Transition was set as the last inpatient or outpatient record with a paediatric treatment or main consultant specialty (specialties were pre-classified as paediatric, adult or unknown). A&E visits and emergency inpatient admissions were counted for each person in each year. Multilevel negative binomial regression models were used to determine associations between (model 1) A&E visits in a year and transition status (i.e. in paediatric or adult care) and (model 2) emergency inpatient admissions in a year and transi- tion status. Age in year, year of birth, age at transition and sex were also included.
Results: Being in adult care was associated with a 16% (95%CI 1-35%) increase in A&E visits and a 38% (95%CI 15-67%) increase in emergency inpatient admissions compared to being in paediatric care. Year of birth, age at transition and sex were also predictive of unplanned hospital visits.
Conclusion / Discussion: Being in adult care is associated with more unplanned hospital visits than being in paediatric care. Improving transi- tion or extending paediatric services for this population may have the potential to reduce these visits.
Abstract number: J-06 Abstract type: Poster
Understanding Value in End-of-Life Care: A Mix-methods Study of Pop- ulation-based Data and People in England and Scotland
Luta X.1, Diernberger K.2, Archer S.3, Williams I.4, Kilkenny C.4, Bowden J.5, Droney J.6,7, Hall P.S8, Marti J.1
1University of Lausanne, Lausanne, Switzerland, 2University of Edinburgh, Edinburgh Clinical Trials Unit, Usher Institute, Edinburgh, United Kingdom, 3University of Cambridge,, Department of Public Health and Primary Care, cambridge, United Kingdom, 4Imperial College London, Helix Centre, London, United Kingdom, 5NHS Fife, Palliative Care, Scotland, United Kingdom, 6Royal Marsden NHS Foundation Trust, Palliative Care, London, United Kingdom, 7Imperial College London, London, United Kingdom, 8St James University Hospital, Oncology, Leeds, United Kingdom
Background: Every year more than half a million people die in the UK.
Most deaths occur in hospital, which many not always be beneficial.
Little is understood about which types of healthcare are most valuable to dying patients and their families and about variation in end of life care provision.
Aims: To understand the care that dying people and their families/carers value, and to examine the extent to which current healthcare systems deliver this.
Methods: We undertook retrospective analyses of large, linked, patient- level datasets in England and Scotland. We also conducted in-depth qualitative interviews with 21 bereaved family members/carers. English primary care data from the Clinical Practice Research Datalink were linked to acute care and mortality data. In Scotland the analysis was population-wide, focused on secondary care. Outcome measures included hospital admissions, critical and emergency care use, primary care contacts and associated costs. These were adjusted by age, gender, cause of death, multi-morbidity, and deprivation status.
Results: Quantitative analyses in both countries revealed steady increases in health care utilization and costs during the last year of life, with sharp increases in acute hospital care in the last month. Care inten- sity and costs varied by age, cause of death and geographical region.
Interacting factors relating to knowledge, expectations and decision making influenced the perceived quality of end of life care.
Conclusions: Our findings lead us to question the extent to which inten- sive, hospital-based care at the end of life offers value to dying people and their families/carers. The limited resources that we have should be used to deliver the kind of care and support that patients’ values. Further
research is needed to improve our understanding of current variations in care. Exemplars of high value care should be identified with a view to informing whole system changes.
Funding: Health Foundation (UK)
Abstract number: J-07 Abstract type: Poster
Knowing that Palliative Care Provision Is Not Limited to People with a Few Weeks to Live Is Associated to More Often Considering All Domains to Be Part of Palliative Care: A Survey among Older People
Kox R.M.1, van der Plas A.G.1, Pasman H.R.W.1, Onwuteaka-Philipsen B.D.1
1Amsterdam UMC, Location VU Medical Centre, Public and Occupational Health, Amsterdam, Netherlands
Background: Misunderstandings about palliative care can hamper peo- ple to realize what care is possible when facing a life-limiting disease.
Aim:
(1) Gain insight into whether Dutch older people know palliative care is not limited to people with only a few weeks to live;
(2) explore whether this knowledge is related to whether the four domains of palliative care come to mind when thinking about palliative care.
Methods: Data of 1,240 (response 93%) members of the Dutch repre- sentative LISS panel aged 65 years and older were used for this cross- sectional study, obtained through an online questionnaire. Participants answered true, false or don’t know regarding the following statement:
‘Palliative care is limited to people with only a few weeks to live’.
Furthermore, they indicated on a list of topics, including the four domains of palliative care, what came to mind when thinking about pal- liative care. Chi-square tests were performed to analyze the relation between answering the statement correct and demographics and topics.
Results: Of 1,240 participants, 23,5% knew that palliative care is not limited to people with only a few weeks to live. Of the remaining par- ticipants, 53.8% answered ‘true’ and 22.7% did not know. Ethnicity and sex were not related to this knowledge; lower age and higher educa- tion were positively related to giving the right answer. The four domains of palliative care all came more often to mind in the group that did know that palliative care is not limited to people with only a few weeks to live than people who did not know this (all p=<.001):
treating symptoms such as pain and dyspnea (74.2% versus 57.4%), attention to psychological problems (44.0% versus 25.6%), attention to social problems (36.1% versus 17.9%,), and attention to spirituality (41.6% versus 24.3%).
Conclusion: For older people to become aware of possibilities of pallia- tive care, efforts should be done to inform them about what palliative care entails.
Funding: ZonMw
Abstract number: J-08 Abstract type: Poster
Predicting Mortality in Ireland: Development of a Four-year Index and Comparison with International Measures
Matthews S.1, Ward M.2, Nolan A.2, Normand C.1, Kenny R.A.2, May P.1
1Trinity College Dublin, Centre for Health Policy & Management, Dublin, Ireland, 2Trinity College Dublin, The Irish Longitudinal Study on Ageing (TILDA), Dublin, Ireland
Background: Identifying individuals who have a higher mortality risk can assist with healthcare planning, reassessing goals of care, exploring
psychosocial and physical issues, and discussing earlier palliative care referral.
Aims: We aimed to develop and validate a four-year mortality index for older adults in Ireland and to compare performance to other established international mortality indices.
Methods: 8,174 older adults aged 50+ in The Irish Longitudinal Study on Ageing (TILDA) in Wave 1 (2009-11) were split into development (n=4,121) and validation (n=4,053) cohorts. Six baseline predictor cate- gories were examined: demographics; cardiovascular-related illness;
non-cardiovascular illness; health and lifestyle variables; functional vari- ables; and healthcare utilization. We identified variables independently associated with four-year mortality in the development cohort and attached these variables a weight according to strength of association.
We summed the weights to calculate a single index score for each par- ticipant and evaluated predicted accuracy in the validation cohort.
Results: The final 10-predictor model assigned risk points for: male 1 point; age (65-69: 2 points; 70-74: 4 points; 75-79: 4 points; 80-84: 5 points; 85+: 7 points); heart attack: 1 point; cancer: 3 points; current smoker: 3 points; difficulty walking 100m: 2 points; difficulty using the toilet: 3 points; difficulty lifting 10lbs: 1 point; self-reported poor physi- cal health: 1 point; and hospital admission in the last year: 1 point. Index discrimination was good (ROC area = 0.78) but not significantly better than equivalent indices developed in US and English data.
Conclusion: This index was predictive of four-year mortality in commu- nity-dwelling older Irish adults and may have various uses in research and clinical practice. Equivalence with indices from other very different countries suggests that international generalizability is high.
Abstract number: J-10 Abstract type: Poster
Attitudes toward Medical Assistance in Dying (MAID) and Palliative Care (PC) among the General Public
Cheng Y.1, Wong J.2, Swami N.2, Pope A.2, Howell D.2,3, Shapiro G.2, Li M.2,4, Rodin G.2,4, Hannon B.2,5, Le L.W.6, Zimmermann C.2,5
1University of Toronto, Faculty of Medicine, Toronto, Canada, 2Princess Margaret Cancer Centre, Department of Supportive Care, Toronto, Canada, 3University of Toronto, Lawrence S Bloomberg Faculty of Nursing, Toronto, Canada, 4University of Toronto, Department of Psychiatry, Toronto, Canada, 5University of Toronto, Department of Medicine, Toronto, Canada, 6Princess Margaret Cancer Centre, Department of Biostatistics, Toronto, Canada
Background: Although surveys have assessed the public’s interest in PC and MAID, none have assessed interest in both within the same population.
Aims: To investigate the Canadian public’s opinions and interest towards PC/MAID and to examine the sociodemographic predictors associated with their interest in PC/MAID.
Methods: A national, cross-sectional online survey was developed and administered via a health research firm to adult members of the public from May to June 2019. Respondents were asked about: whether they had heard of PC; knowledge of elements of the PC WHO definition; and interest in referral to PC/MAID if seriously ill. Univariable logistic analysis was used to determine sociodemographic factors associated with inter- est in PC/MAID referral. Analyses used data weighted according to Statistics Canada demographic distributions.
Results: Of 1,518 respondents, 1,362 had heard of PC. Of these, 933/1,362 (69%) would be interested in discussing PC referral if seriously ill and 57% MAID; 45% would be interested in both. Those who had heard of PC were more likely to be interested in MAID referral than those who had not heard of PC (782/1,362 [57%] vs 69/156 [44%], p<0.01).
Among those who had heard of PC, interest in PC referral was associated with older age, being married/common law, being a healthcare profes- sional, having a loved one with a serious illness, and better knowledge of the definition of PC (all p<0.01). Interest in MAID referral was
associated with having no religion, non-Conservative political affiliation, and better knowledge of the definition of PC (all p<0.01).
Discussion: Members of the public who were aware of PC’s definition were more likely to be interested in potential referral to both PC and MAID. Age and experience with PC were associated with interest in PC referral, while religion and political affiliation were associated with inter- est in MAID. These results will be examined further in multivariable analyses.
Abstract number: J-11 Abstract type: Poster
Exploring Costs, Cost Components and Associated Factors among Peo- ple with Dementia Approaching the End of Life: A Systematic Review Leniz J.1, Yi D.1, Yorganci E.1, Thoms L.1, Suji T.2, Cripps R.1, Higginson I.J1, Sleeman K.E1
1King’s College London, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, United Kingdom, 2King’s College London, School of Medical Education, Faculty of Life Science and Medicine, London, United Kingdom
Introduction: Understanding the costs of care for people dying with dementia is essential to guide service development, but this information has not been systematically synthesised. We aim to answer: (1) Which cost components have been measured in studies? (2) What are the costs of care and how do these change closer to death? (3) Which factors are associated with the costs of care among people with dementia approach- ing the end of life?
Methods: CINAHL, Medline, Cochrane, Web of Science, EconLit, Embase and references were searched for any type of study reporting primary data on costs of care for people with dementia near the end of life. All papers were published between 1999-2019. Two authors screened all full-text studies. We calculated the mean costs per person per month for each study and used narrative synthesis and descriptive tables to sum- marise the results.
Results: 19 studies, 16 from the USA, were identified. The majority of studies included in-hospital, out-of-hospital, community and hospice care expenses paid by insurance companies. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving.
The monthly total direct cost of care rose towards death, from $1,787 to
$2,999 (USD 2019) in the last 12 months, to $4,570 to $11,921 (USD 2019) in the last month of life. Older age, female gender, black ethnicity, higher educational background, more comorbidities, and dementia severity were associated with higher costs.
Discussion: Cost of dementia care rises closer to death. Informal costs of care represent a substantial component of total costs but have been rarely measured, and there is little information from countries outside the USA.
Abstract number: J-12 Abstract type: Poster
Nationwide Study on the Prevalence and Risk Factors of Acquiring Pressure Ulcers in Palliative Care Units
Evin A.1,2,3, Leblanc E.4, Mermet O.4, Nicolas B.5, Barois B.5
1University Hospital Center of Nantes, Palliative Care Unit, Nantes, France, 2University of Nantes, Medical School, Nantes, France, 3INSERM Nantes, Unit U 1246 SPHERE MethodS in Patients-centered outcomes and HEalth ResEarch, Nantes, France, 4French Society for Palliative Care and Support, Paris, France, 5The French Pressure Ulcer Society, Saint- Saturnin, France
Background: In palliative care, patients constitute a particularly fragile population; even more so concerning those who are hospitalized in
palliative care units. The prevalence and the incidence of pressure ulcers in patients receiving palliative care, wherever they are being treated, is around 12.4% and 11.7% respectively. Very few data are available on palliative care units.
Aims: To study the prevalence of pressure ulcers in palliative care units in France and to know the risk factors of acquiring a pressure ulcer in these units.
Methods:Nationwide multicentre observational study, on a given day. A questionnaire was completed by a team consisting of a nurse and a phy- sician, based on medical records. The characteristics of the patients hos- pitalized in the unit were recorded, in particular for those with pressure ulcers. The study was approved by an ethics committee.
Results: Data from 633 patients were collected (56% were women, 40%
of patients were aged over 75, 81% were suffering from cancer). 63 (41%) departments out of 152 took part in this study. The prevalence and the incidence of pressure ulcers were 28.8% and 14.1% respectively.
77.4 % of these patients were permanently bedridden, 68% were in a state of clinical undernutrition and 77% were currently receiving psycho- tropic drugs (these elements are known to be pressure ulcer risk fac- tors). The significant risk factors found in the study for acquiring a pressure ulcer in a palliative care unit are: previous history of pressure ulcers (p=0.0057), the presence of organ failure (p=0.033), in particular heart failure (p=0.012), arterial hypotension (systolic pressure <100) (p
= 0.0339) and long-term corticotherapy (<0.05).
Conclusion: In these highly medicalised units, we observe a high preva- lence of pressure ulcers. Knowing the risk factors of acquiring a pressure ulcer in palliative care units enables preventive measures to be imple- mented. Following this study, recommendations for good practice will be made.
Abstract number: J-13 Abstract type: Poster
Is Early Palliative Care Associated with Reduced Health Care Cost of End-of-Life Care in Patients with Advanced Cancer?
Maessen M.1, Zwahlen S.2, Aebersold D.3, Eychmüller S.1
1Inselspital University Hospital Bern, University Center for Palliative Care, Bern, Switzerland, 2Engeriedspital, Palliative Care, Bern, Switzerland, 3Inselspital University Hospital Bern, Radiation Oncology, Bern, Switzerland
Background: It is good practice to perform economic analyses alongside randomised controlled study (RCT). Results of economic analyses make it easier to decide on the next research steps or the possible implemen- tation of the intervention into standard care.
Aim: The objective of this SENS-Economic study is to determine if adding early palliative care structured by SENS to standard oncology care influ- ence health care cost in the last month of life of cancer patients.
Methods: The SENS-Economic study is nested in a multicentre, ran- domised controlled trial of early palliative care in Swiss oncology patients (SENS). The study intervention consists of a single in-hospital consulta- tion providing early palliative care according to the SENS structure. SENS is a practice-oriented, thematic procedure for assessing, planning treat- ment and evaluating chronic progressive or potentially life-threatening diseases. SENS takes a participatory approach to strengthen self-efficacy and complements medical-diagnostic and therapeutic procedures.
Results: SENS-Economic analysed data from 43 patients (43% response rate). Absolute overall health care costs in the last month of life that were eligible for mandatory health insurance averaged 558 EUR lower in the intervention arm than in the usual care arm (P=0.64). Results also showed no significant difference in health care utilisation in the last month of life. Descriptive analyses showed that cancer patients in the intervention arm used the hospital emergency room less (-22%) and the emergency phone number of the hospital less (-13%) than patients in the usual care group.
Conclusion: There was no significant difference in health care cost between patients receiving the new intervention and standard care, but the small number of study participants reduces the robustness of this conclusion. Anticipatory planning may effectively reduce emergency room contacts.
Abstract number: J-14 Abstract type: Poster
End of Life and Mortality of the Elderly in France: Are Existing Palliative Care Resources Adequate?
Bretonniere S.1, Cousin F.1, Gonçalves T.1
1French National Center for Palliative Care and End of Life, Paris, France Context: French demographics are characterized by an aging population and a growing number of deaths. Where do these elderly people die?
What are the available palliative care resources? The French Atlas of Palliative Care and End of Life ambitioned to present and analyze data to answer these key public health questions.
Method: We conducted a large scale analysis of national health and mortality data to assess whether palliative care resources are sufficient and adequate for the elderly in France.
Results: In 2018, 609,648 people died in France, 70% were 75 years old or older. 57% of people aged between 75 and 84 years old died in hospi- tal, 22% at home, 11% in nursing homes and 9% in other places. Within this population, the first cause of death is cardiovascular diseases (29%) followed by cancers (22%). In terms of resources, there were, 7500 pal- liative care beds in 2019 and 428 palliative care mobile teams. All these resources are hospital-based. Although the palliative care offer has increased over the last 10 years, territorial inequalities persist: to date, 26 counties do not have palliative care units, despite these counties hav- ing a high rate of elderly.
Discussion: Over the last 20 years, 4 national strategies strove to develop palliative care resources in France. These resources were and remain hospital-based while the proportion of elderly people dying at home and in nursing homes keeps increasing. Palliative care mobile teams lack human resources to care for people outside hospital settings, although this is part of their mission.
Conclusion: This Atlas highlights the need to reconsider the way pallia- tive care resources are allocated across the territory. In light of a growing population, palliative care resources outside hospital settings are becoming increasingly important and necessary.
Abstract number: J-15 Abstract type: Poster
Higher Prevalence of Dementia but No Change in Total Comfort While Dying among Nursing Home Residents with Dementia between 2010 and 2015: Results from Two Retrospective Epidemiological Studies Miranda R.1,2, Smets T.1,2, Van Den Noortgate N.3, Deliens L.1,2,4, Van den Block L.1,2
1Vrije Universiteit Brussel (VUB) and Ghent University, End of Life Care Research Group, Brussels, Belgium, 2Vrije Universiteit Brussel (VUB), Department of Family Medicine and Chronic Care, Brussels, Belgium,
3Ghent University Hospital, Department of Geriatric Medicine, Ghent, Belgium, 4Ghent University Hospital, Ghent University Hospital, Ghent, Belgium
Background: Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die.
Aims: We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing
homes in Flanders, Belgium and their palliative care service use and comfort in the last week of life.
Methods: We used two retrospective epidemiological studies in region- wide representative samples of nursing homes in Flanders, namely the Dying Well with Dementia study (2010) and the Palliative Care for Older People in nursing homes in Europe (PACE) study (2015). Samples included residents who died within three months before data collection and had dementia according to general practitioner (GP) and/or nursing home staff. After-death questionnaires were distributed to nursing home staff closely involved in care, GP and nursing home administrator, who all contributed in determining residents’ demographic and clinical characteristics. The nursing home staff reported palliative care service use, (e.g. pain assessment), and comfort in the last week of life using the validated Comfort Assessment in Dying-End of Life in Dementia scale.
Results: We included 198 residents in 2010 and 183 in 2015. We found a 15%-point increase in dementia prevalence (p-value < 0.01), with a total of 11%-point decrease in severe to very severe cognitive impairment (p
= 0.04). Controlling for residents’ characteristics, in the last week of life, there was an increase in the use of pain assessment (+20%-point; p <
0.03) but no change in total comfort.
Conclusion: The higher prevalence of dementia in nursing homes with no change in residents’ total comfort while dying emphasizes an urgent need to better support nursing homes in improving their capacities to provide timely and high-quality palliative care services to more residents dying with dementia.
Abstract number: J-16 Abstract type: Poster
Unmet Need of Palliative Care in People Living with HIV/AIDS Manjunath S.H.1, Singhai P.1, Salins N.1, Varma M.1, Saravu K.1
1Kasturba Medical College, Manipal, Manipal Academy of Higher Education, Manipal, Manipal, India
Background: India is the 3rd largest HIV epidemic in the world. Patients with HIV/AIDS require palliative care for several physical symptoms and require psychosocial support but the burden is not understood well, nor treated adequately as a consequence.
Aims: To assess the burden of various symptoms requiring supportive care in HIV/AIDS in a single tertiary health setting and to determine the unmet need regarding supportive and palliative care in people living with HIV/AIDS (PLWHA) in the region.
Methods: A cross sectional survey of PLWHA presenting to the hospital was conducted using NAT-PD, ESAS-r. Data was collected and analysed using Microsoft excel.
Results: out of 97 patients, 19 had WHO clinical stage 4 disease. 67 patients were on treatment for other comorbidities. 57.7 % of patient were unaware of palliative care. However on explaining the role of pal- liative care, 92.7 % of patients felt need of supportive care in HIV treat- ment. Patients had following need (potential or significant) for palliative care: unresolved physical symptoms- 72.2%; problems with activities with daily livings- 37.1%, psychosocial symptoms which is interfering with wellbeing or relationships - 46.4 %; spiritual or existential issues- 43.3 %; financial toxicity- 36%; concern over sexual functioning/ rela- tionship- 29.9; having factors making healthcare more complex- 20.6 %.
66.7 % of caregiver were distressed about physical symptoms of their loved one. 34 % of caregiver had difficulty in providing physical care and 38.2 % had difficulty coping. 44.8 % of caregivers experienced problems that interfered their own wellbeing. Pain (42.3%), fatigue (51.5%), L.O.
Apetite (43.3 %), depression (42.3%), anxiety (33 %). In less than 2 % of patients specialists referral was sought.
Conclusion: People living with HIV and AIDS have high unmet palliative care need and require better integration of palliative care among these patients to improve palliative care.