For proper planning of material resources (number and type of facilities, number of beds and equipment) as well as human resources for provision of palliative care it is necessary to understand how many people actually need it. We need to know not only the number of potential patients, but also who those people are, of what age, and what medical conditions they have.
Previously, such assessments have been carried out for the whole country as well as for specific rayons (counties) of Ukraine. However, a need assessment for palliative care at the level of rayons and towns of oblast significance using a common methodology has been carried out for the first time.
https://socialdata.org.ua/palliative
When you chose an oblast on the map all figures are calculated for that oblast including the number of patients, number of available resources, and a methodology of estimation for each figure.
In the visualization (visualizations are available in Ukrainian only) you can see estimates of resources (number of facilities, beds, doctors and nurses) needed for provision of palliative care in each oblast or rayon of Ukraine. The calculations were carried out based on Recommendations from the European Association for Palliative Care and minimum requirements of the National Health Service of Ukraine on secondary health care providers.
Bear in mind that those calculations are tentative and by no means are the ultimate truth. We realize that there is always room for perfection and our methodology can me also refined upon.
At the moment we cannot analyze big data for patients considering their functional status, pain level and other parameters important for the palliative care. Doctors do not use screening tools systematically, although that would allow identifying patients in need of a palliative care early and documenting those data for further analysis.
Methodology
У світі існують різні підходи і дослідження щодо визначення популяційної потреби у паліативній допомозі. Найпоширеніші — на основі так званих «рутинних даних». Рутинні дані — це дані, що згенеровані адміністративними та клінічними процесами — на противагу даним, що отримані лише в цілях певного дослідження.
There are different approaches to assess the need for palliative care in population. The most common are based on routine data. Routine data are generated by administrative and clinical processes as opposed to data gathered for particular research.
Data on causes of death are the main source of such assessments. However, we found serious gaps in registration of causes of death and we have well grounded suspicions that they are being falsified on a mass scale in Ukraine (see Just numbers).
Thus, our first modeling of need for palliative care found considerable issues with both data and methodology. Therefore, in March 2018 we started discussing and developing a more reliable methodology.
Main stages:
📅 October – December 2017: Modeling based on official statistics. We calculated the need using methodology of WHO and WPCA (Worldwide Hospice Palliative Care Alliance) for adults, and that of UNICEF and ICPCN (International Children’s Palliative Care Network) for children. We used coefficients and groups of diseases from the Global Atlas on Palliative Care (WPCA, WHO, 2014) and from the Assessment of the Need for Palliative Care for Children (ICPCN, UNICEF, 2013). As a result we realized the need for improving mechanisms of data collection and methodology itself (diagnostic and age groups, use of mortality and prevalence indicators have to be specified).
📅 January-March 2018: We analyzed availability and detailization of routine data on cause of death, prevalence and incidence by diagnostic groups that require palliative care the most. We took diagnostic groups from 4 sources: the Global Atlas of Palliative Care at the End of Life; Assessment of the Need for Palliative Care for Children; Directory of Life-Limiting conditions (Hain and Devins, Cardiff, 2011) and the list of diagnostic groups proposed for medical statistic reporting on palliative care.
📅 March 2018: Expert discussion Methodology for estimating need for palliative care with the participation of the Ministry of Health, the State Statistics Service of Ukraine, the Center for Medical Statistics, the Minister of Social Policy, and specialists in palliative care.
📅 March – August 2018: Consultations with experts were conducted to identify sources of data and values of relevant coefficients used for estimating the need. The Procedure of Palliative Care Provision and the List of medical indications for Palliative Care Provision for oblasts and hospital districts were developed.
In September 2018, Data on Palliative Care with estimates of the need for palliative care in all regions of Ukraine were published.
12 diseases for adults and 10 for children were nosologically classified. 330 301 patients needed palliative care in 2017 in the whole country of Ukraine. The following data were used for estimates:
- Medical reporting forms:
- Form 12
- Form 10
- Disaggregated data according to causes of death from the State Statistics Service of Ukraine
- Data from the Register of patients with tuberculosis
- Data from the national register of cancer.
November 2018: Form 12 of medical statistics that had been the main source of data on disease prevalence for need assessment was cancelled.
January – February 2019: a new methodology was developed. It included such forms of reporting medical statistics as:
- Form 20: Report of the Medical Facility
- Form 19: Report on Children with Disabilities under age 18
- Form 10: Report on Provision of Psychiatric Help
As a result the number of nosologically classified conditions requiring the palliative care was raised to 14 and now is the following:
Adults
- Cancer
- Cardiovascular diseases
- Tuberculosis
- Dementia
- Diabetes
- Rheumatoid arthritis
- HIV/AIDS
- Fibrosis and cirrhosis of the liver
- Kidney failure
- Chronic obstructive pulmonary disease
Children
- Congenital anomalies
- Perinatal conditions
- Cerebral paralysis
- Cancer
- Diabetes
- Intellectual disability (severe or profound)
- HIV/AIDS
- Neuroinflammation
- Cardiovascular diseases
- Tuberculosis
- Phenylketonuria
- Cystic fibrosis
- Chronic hepatitis
- Mucopolysaccharidoses
The number of people in need for palliative care is estimated using coefficients for relevant indicators for each disease or group of diseases. Based on availability and accuracy of routine data for particular diseases there were identified indicators (mortality, morbidity etc.) for estimation. For individual diseases the need for palliative care is calculated as a sum of individual indicators based on data from different sources.
Detailed information on methodology of estimates and a tentative number of patients in the need for palliative care by groups of diseases you can find by pressing disease name in the interactive visualization; then, a separate box will pop up:
In March – August 2019, data at rayon and town/city level have been collected; in September 2019 – February 2020, the data were processed and prepared, interactive tools were developed and designed to present the need in palliative care.
Resources needed for provision of palliative care
Estimates on the need in palliative care services, necessary human and material resources (doctors, nurses, beds) are based on the workload of the most up-to-date palliative services in Ukraine, NHSU requirements for purchase of medical services on palliative care (minimum requirements of NHSU), and the White paper on standards and norms for hospice and palliative care in Europe (Recommendations from the European Association for Palliative Care – EAPC, 2009).
Thus, the need for palliative care has to be covered in 40% by inpatient facilities and in 60% by outpatient services. Our visualization presents minimum and maximum estimates for different age groups and types of care (inpatient or outpatient).
Minimum Inpatient (hospice, palliative department, beds): 8 palliative beds per 100 000 people; 25 per one medical facility; at least 2 doctors (specialists in palliative care, a psychologist or psychotherapist, a physical therapist MD and a physical therapist without medical education) and 4 nurses per facility (minimum requirements of NHSU).
Outpatient (mobile) services: 1 service per 100 000 people (for provision of palliative services at patient’s home); 2 doctors and 2 nurses per service (minimum requirements of NHSU).
Optimum
Inpatient: 10 beds per 100 000 people; not more than 12 beds per medical facility/department (the optimal number of beds per facility is LOWER than for minimum since the less beds and the more personnel there is the higher is quality of palliative care); 0.15 of doctor’s wage per 1 bed and 1.2 of nurse’s wage per 1 bed according to recommendations of EAPC. The proportion of children and adult population is calculated from proportion of patients of different age that need the palliative care on a certain territory.
Outpatient (mobile) services: 1 mobile service for children is estimated per 100 underage patients per 1 year; 1 mobile service for adults is estimated per 300 patients per 1 year; 4 doctors and 12 nurses per 1 mobile service (based on the best Ukrainian practice).
These estimates are tentative. Their main purpose is to give us to understand the scale of need for palliative care and resources that would cover the need. In reality, several communities or rayons can combine their efforts to provide the palliative care in certain territories.
Methodology for estimating the need for palliative care should be subject to constant update and modification to adjust to new data (they started collecting) and lost data (they stopped collecting). Our methodology uses routine data that previously were not used for assessment of the need for palliative care.
Only mass assessment of medical state of seriously ill patients using internationally recognized scales and tools (including methods of pain assessment, identification of severe symptoms and their progression), digital record keeping for each patient with further analysis of big data will allow understanding the number, conditions, symptoms and states of those who are in need for palliative care in Ukraine.
Tentative availability of resources
In April 2020, the second phase of medical reform has been launched in Ukraine; it means that medical facilities of the secondary level are being paid by categories of services. One of them is inpatient, and another is outpatient palliative care for adults and children; hundreds of facilities signed agreement on provision of those services.
For each facility we know:
- The total number of doctors and nurses;
- How much they earn for provision of inpatient and outpatient services;
- The total amount of money they earn from all categories of services they provide;
- The total number of all categories of services they provide according to agreements;
- Places where they provide services.
At the moment we can make tentative estimates on proportions of personnel employed in the palliative care:
- Either by proportion of budget facilities spend for this category of services,
- Or by proportion of palliative services among other categories of services facilities were contracted to provide.
The first estimate in our visualization is called ‘by % of budget’; the other one is called ‘by % of services’.
In estimates presented above we tried to calculate the tentative need for palliative care and resources necessary to provide it considering different groups of conditions and age with the deepest possible detailization that available routine data allow.
We understand the limitations of data and methodology. At the same time we would like this estimates to initiate a well-informed discussion on how data and their analysis could be improved and effectively used since resource will always be limited.
There is no country, even among those better off, where the palliative care would be fully provided. In our reality the budget pie is small that is why we have to spend the money effectively, and that is the reason why we want our data to be as accurate as possible.
This estimate of the need for the palliative care has been conducted within the project Improvement of data collection system on palliative care with the support from the International Renaissance Foundation.