Modeling palliative care need based on official statistics
There is hardly a family in Ukraine whose lives have never been disrupted by terminal illness of one of its members. Hardly any Ukrainian has never had at least some experience in caring for the loved one suffering excruciating pain associated with cancer or other severe illness. Up until recently the sufferings at the end of live were perceived as a given – an unavoidable part of nature course. Society used to have little knowledge about palliative care – type of medical care aimed at easing the pain, alleviate the suffering, and improving the quality of life when there is no other way to treat the disease. Many Ukrainians are still unaware of the existence of palliative care, or their right to obtain it.
Regrettably, even medical personnel are often unaware of palliative care and its importance. Lack of adequate painkillers, absence of mere knowledge of the issue and the skills to improve the quality of life for the terminally ill, have, in fact, sentencing patients to inhuman sufferings, depraving them of ending the life in dignity.
Long term suffering of the beloved influence everyone involved – exhaustion, psychological stress, substantial financial burden degenerate the quality of family members’ everyday life.
World Health Organization definition for palliative care is as follows:
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
On October 19, 2017 the Parliament of Ukraine started medical reform by adopting the Law #6327 On State Financial Guarantee for Provision of Health Services and Medical Supplies. Emergency, primary and palliative medical care made the list of the medical branches to be covered by the state one hundred percent.
It is not enough for the Government to declare intention. To ensure adequate allocation of funds, authorities have to quantify total need for palliative care (both the number of people in need of palliative care and amount of finances that will be provided by the State).
There are still ongoing professional discussions regarding which type of care qualifies as palliative, how to record the fact of providing palliative assistance or in which way the amount of needed and/or provided help should be calculated regarding pain relief and symptomatic treatment.
Assessment of need for palliative care: methodology
There are official methodological recommendations regarding assessment of need for medical care, including palliative care.
The analysts of the Ukrainian Center for Social Data, with support from International Renaissance Foundation, conducted a study aimed at defining the extent of need for palliative care. This modelling was carried out using official data and available official (Ukrainian and international) methodology. The assessment of the need for palliative care for adults was performed based on mortality data (2005-2016, courtesy of the State Statistics Service of Ukraine). The assessment of the need for palliative care for children was performed based on prevalence of diseases data (2016, courtesy of the Medical Statistics Center at the Ministry of Health of Ukraine). Methodology used for the need assessment for adults corresponds to WHO and WPCA recommendations (Global Atlas of Palliative Care at the End of Life, 2014); for children – UNICEF and ICPCN (Assessment of the Need for Palliative Care for Children, 2013).
According to the Order of the MoH of Ukraine #420 On Approval of Methodical Recommendations on Calculation of the Population’s Need for Medical Aid the palliative care need calculation is to be performed by the formula:
Coefficient 0.80 is recommended by WHO for palliative care need assessment in oncological patients for both children and adults. According to Methodical Recommendations, the same coefficient is to be used in assessing the need for palliative care for patients with chronic illnesses other than cancer. Such undifferentiated approach – when the same coefficient is used for all diagnostic groups – does not account for differences in the course of various illnesses and only allows for rough estimates.
It is also worth mentioning that the definition of terminal (incurable) illness remains notional and is not codified by the International Classification of Diseases, which results in impossibility of statistical separation of such patients.
To address this issue we broadened official methodology adopted by MoH by including WHO and UNICEF recommendations for usage of specific coefficients for different diagnostic groups. These coefficients were calculated using scientific data on pain syndrome prevalence among patients within each illness group.
Global Atlas of Palliative Care at the End of Life (WPCA, WHO, 2014) estimates palliative care need (for adults) within specific illness groups, and recommends using the following coefficients to different type of life-limiting conditions:
| Cancer (Malignant neoplasm) | 0.80 |
| Tuberculosis | 0.90 |
| Rheumatoid arthritis | 0.89 |
| Parkinson disease | 0.82 |
| HIV/AIDS | 0.80 |
| Cardiovascular disease | 0.67 |
| Chronic obstructive pulmonary disease | 0.67 |
| Diabetes mellitus | 0.64 |
| Kidney diseases | 0.50 |
| Alzheimer’s and other dementias | 0.47 |
| Multiple sclerosis | 0.43 |
| Cirrhosis of the liver | 0.34 |
Study Assessment of the Need for Palliative Care for Children (ICPCN, UNICEF, 2013) recommends calculating the palliative care need based on the indicators of the prevalence of diseases, using coefficient 0.67 for all type of illness except oncological that should be calculated using coefficient 0.80:
| Cancer (Malignant neoplasm) | 0.80 |
| Tuberculosis | 0.67 |
| Cardiovascular disease | 0.67 |
| Chronic hepatitis | 0.67 |
| Inflammatory diseases of the central nervous system | 0.67 |
| Cerebral palsy | 0.67 |
| Diabetes mellitus | 0.67 |
| Dementia and mental retardation (sever and profound) | 0.67 |
| Neonatal conditions | 0.67 |
| Congenital anomalies | 0.67 |
Assessment is made on the basis of the indicator of the prevalence for the following illness: tuberculosis, cardiovascular disease, chronic hepatitis, inflammatory diseases of the central nervous system, cerebral palsy, diabetes mellitus, dementia and mental conditions (severe and profound), neonatal conditions, and congenital anomalies. Patients 0-17 years old inclusive are considered children for the purposes of this study.
Total need for palliative care as per modeling results
The total need for palliative care in Ukraine was 598 448 patients in 2016, according to the data by the State Statistics Service and the Medical Statistics Center. There are 343 492 adults (985 persons per 100 000 population aged 18 years and older) and 254 956 children (3348 persons per 100 000 population aged 17 and younger). Data on the adult and children population by the region (for calculating relative indicators) were obtained at the State Statistics Service of Ukraine website.
The study focused on the following topics:
- The need for palliative care within disease groups for adults and children
- The need for palliative care by region
- The need for palliative care for adult population: dynamics in time
- Problems with quality of data and discrepancies in statistical data
- Comparison of Ukraine and the world
- The need for palliative care modeled using official data, and the need data provided at our request by some of the regional health care departments
The need for palliative care within disease groups for adults and children
Adults:
The palliative care need assessment for adults is performed based on mortality data and depends on the accuracy of established (recorded) cause of death.
We take a look at general trends within the official data to identify indexes that could influence the assessment accuracy and require further clarification/refinement.
According to the State Statistics Service, the need for palliative care in 2016 was 343 495 thousand people (985 persons per 100 000 adult population). In this assessment Donetsk and Luhansk Oblasts (administrative regions) health care data only represents the territory under control of Ukrainian government, while total population numbers represent the whole region.
Cardiovascular disease is the dominant cause of death and palliative care designation for adult Ukrainian population (753.1 per 100 000 population 18+ years of age). It is followed by cancer (180.4 per 100 000), chronic obstructive pulmonary disease (12.9 per 100 000), cirrhosis of the liver (11 per100 000), tuberculosis (10.5 per 100 000), HIV/AIDS(9.2 per 100 000), diabetes mellitus (3.6 per100 000.), kidney diseases (2.6 per 100 000), Parkinson disease (0.4 per 100 000), Alzheimer’s disease (0.3 per 100 000) and rheumatoid arthritis (0.3 per 100 000).
Children:
In 2016, as per modeling results, every 30th child in Ukraine was in need of palliative care – 3348 children per 100 000 population aged 18 and younger.
Dominant position, with regards to prevalence of diseases and palliative care need, belongs to cardiovascular diseases (1592.4 per 100 000 population 17 and younger ), followed by congenital anomalies (128,6 per 100 000), cerebral palsy (130.3 per 100 000.) neonatal conditions (102,2 per 100 000), diabetes mellitus (70,6 per 100 000), cancer (62,1 per 100 000) dementia and mental retardation (sever and profound) (47,6 per100 000), inflammatory diseases of the central nervous system (39,9 per 100 000), tuberculosis (6,5 per 100 000), and chronic hepatitis (6,0 per 100 000).
The need for palliative care by region
Kharkiv and Dnipropetrovsk Oblasts stand out among other administrative regions of Ukraine: total need for palliative care in Kharkiv oblast is 25.4 thousand adult patients and 28.4 thousand children patients; in Dnipropetrovsk Oblast it is 35.1 thousand and 18.5 thousand respectively.
Since total number of patients directly depends on the population of a region, a weighted index of assessed need for palliative care is more convenient for comparison. The latter is fairly homogeneous throughout the country – starting from 850 per 100 000 adult population (Zakarpattia) up to 1400 per 100 000 (Chernihiv).
Donetsk and Luhansk oblasts deviate from the general trend due to inadequate (incomplete) data (significant parts of these regions are occupied by Russians).
The following interactive visualization allows exploring the modeled palliative care need data –for adult population of Ukraine – by region and disease group.
When it comes to the assessment of palliative care need among children, the discrepancies in regional weighted indexes are much greater. Kharkiv oblast exhibits the highest index (6 700 per 100 000), while Kirovograd oblast boasts the lowest index for palliative care need for children (1000 per 100 000). Similarly, Zhytomyr oblast has the second highest index in the country (5903 per100 000), while neighboring Kyiv oblast has second smallest index of little over 2 000 children per 100 000 population aged 17 and younger.
Geographical distribution by disease group: children
Kharkiv, Chernihiv, Vinnitsa Oblasts and the city of Kiev are the leaders in prevalence of congenital anomalies. The lowest index for this type of condition is in Mykolaiv Oblast. The distribution among regions is homogeneous for the most part. Similar situation is observed in cerebral palsy group (130.3 per 100 000 children population). Here Cherkasy Oblast stands out with the highest index of over 200 patients per 100 000 children population and Rivne oblast – with the lowest index in the country of a little over 100.
However, when it comes to the leading cause of palliative care need – cardiovascular disease – the weighted regional average (index) appears to be extremely volatile. With the country’s average at 1592 person per 100 000 children population, palliative care need index in Kharkiv Oblast reaches as high as 3900 per 100 000, in Zhytomyr and Rivne oblast it is 3800 and 2850 per 100 000. While in Lviv, Volyn, and Mykolaiv Oblast it is less than thousand – 785, 805, 913 per 100 000, respectively. And in Kirovohrad Oblast the index is the lowest in the country – 490 per 100 000.
The following interactive visualization allows independent exploration of the modeled data for the palliative care need among Ukrainian children, by region and disease group.
The need for palliative care among adults: dynamics
Since data on the cause of death for adults obtained from the State Statistics Service of Ukraine contains 12 year series (2005-2016), we had an opportunity to follow the dynamics in assessment of need for palliative care for different groups of adult population. The level of data detail allows for the need (recorded cause of death) analysis in terms of region, sex, and type of settlement (urban / rural).
While the existing situation with cardiovascular diseases among children renders mixed/uneven results, when it comes to adult population with this type of diseases the picture seems even more ambiguous.
Taking into account that the coefficient in assessing the need for palliative care for cardiovascular diseases is 0.67 compared to 0.80 coefficients for malignant neoplasm, one might arrive at conclusion that there is an “epidemic” of cardiovascular disorders in Ukraine. At the same time, as the total rate of death in Ukraine lowers, one can observe lowering of mortality rate for every major type of disease requiring palliative care. Moreover, the official death rate from tuberculosis and chronic obstructive pulmonary disease had almost halved during the period (2005-2016).
The number of deaths associated with HIV/AIDS had risen up to 2011, and then started to go down in 2012. Death rate from multiple sclerosis and rheumatoid arthritis also went down, and the only diseases that exhibit rate growth as an official cause of death are Parkinson’s and Alzheimer’s. At the same time the total number of deaths recorded as caused by Parkinson’s and Alzheimer’s diseases is so small, that it remains statistically insignificant; and so is the total “official” need for palliative care for this type of patients.
At this point our study faces two crucial issues:
- Methodological issue – is it appropriate to assess the need for palliative care for such patients based on mortality data, taking into account traditionally low level of registering these diseases as the cause of death?
- Data quality issue – too few causes of death officially registered as “Alzheimer’s disease” or “Parkinson disease”.
Problems with quality of data and discrepancies in statistical data
This leads us to our next point as we investigate possible causes of cardiovascular “epidemic” in Ukraine. To clarify the situation we use the official postmortem data as the best instrument to establish the cause of death.
It turns out that within the largest group of deceased (almost 300 thousand people) whose reason of death was recorded as “cardiovascular diseases” 76.3% of deaths were registered without autopsies. It adds up to 288 000 people – three times as many as the number of those who died of all other conditions requiring palliative care – combined. No matter whether the data got falsified deliberately or inadvertently, the discrepancy in the cause of death is the source of data ambiguity and inaccuracy in assessing the need for palliative care.
Comparison of Ukraine and the world
Ukraine differs substantially from the developed countries when it comes to mortality rate from specific causes and is the world’s leader in the rate of death from cardiovascular diseases. Other countries with the world’s highest cardiovascular death rate are former members of socialist bloc and the USSR: Bulgaria, Belarus, Russian Federation, Latvia, Lithuania, Romania, Georgia, and Moldova.
At the same time Ukrainians rarely die from Alzheimer’s disease, as the country ranks 136 on Alzheimer’s mortality rate – between Botswana and Cameroon.
These kind of discrepancies tell us not so much about the real causes of death, but rather about the problems with accuracy of cause of death registration, and, correspondingly, with data reliability. At the same time a number of questioned Ukrainian experts were surprised that Alzheimer’s disease can be identified as the cause of death whatsoever.
So, it does not come as a surprise that the “quality of death” index by The Economist Intelligence Unit ranked Ukraine 69 in 2015 – right between Columbia and Ethiopia.
For example, consider the rate of death from Alzheimer’s disease in the countries that made the top 10 of the “quality of death” index: UK (112/100 000), Australia (56), Ireland (46), Belgium (73), Germany (51), Netherlands (89), USA (82), and France (76).
The corresponding figure for Ukraine is 5 registered deaths from Alzheimer’s disease per 100 000 population (according to WHO data).
As we compare causes of death in the following nine countries – UK, Australia, Ireland, Belgium, Germany, Netherlands, USA, France and Ukraine – the picture gets even more puzzling. The rate of death from many disease types in Ukraine is lower than in other eight counties: chronic obstructive pulmonary disease, cirrhosis of the liver, diabetes mellitus, kidney diseases, multiple sclerosis, rheumatoid arthritis, Alzheimer`s disease. Ukraine exhibits higher rate of death from tuberculosis and HIV/AIDS – 15 and 22 per 100 000, compared to 0-1 and 0-2 per 100 000, respectively. The rate of cancer (malignant neoplasm) in Ukraine is higher than in the USA, Australia, and Ireland; though lower than in the UK, Belgium, Germany, and France. Letter attests either to faulty diagnostic practices in Ukraine, or to the practice of concealing the real cause of death.
For example, the rate of death from cardiovascular diseases is way off the scale – 1053 deaths per 100 000 population, compared to 178-270 deaths per 100 000 in all the countries taken to comparison, except for Germany where the rate makes 408 deaths per 100 000 population.
The need for palliative care modeled using official data and the need data provided at our request by some of the regional health care departments
To perform analysis of current practices of collecting data on provision of palliative care, Ukrainian Center for Social Data sent the request to all regional healthcare departments to provide public information regarding organizing and providing palliative care to adult and children population. In particular, we requested data on the need for palliative care to identify the specific level of need in every region (as per health authorities) and methodology used to assess it. Not all the departments responded to our request and submitted data; furthermore, there is substantial divergence in regional data provided.
When it comes to providing actual palliative care, only partial data exist for some regions. Another problem is that data present only in-patient care (hospices, palliative care departments and other in-patient departments that provide palliative care). Out-patient assistance is not accounted for.
At the same time even data at hand are absolute heterogeneous and rise more questions than provide answers. For example, in Kirovohrad Oblast the need for palliative care assessed by the formula (modeled by Ukrainian Center for Social Data) is 12 654 persons (children and adults); Kirovohrad Regional State Administration set the need for palliative care at 10 000 person, with 8 948 already receiving palliative assistance.
On the other hand, there is Kharkiv Oblast where the officials calculated the need for palliative care at the level of 250 persons. This is lower than the current number of palliative care patients – 373, and way off the number assessed by the formula – 53 935 adults and children.
Similarly, the city of Kyiv healthcare officials calculate the need for palliative care (2 600 children and adults) at a lower level than the current number of patients – 3 500, while the need assessed “by the formula” is 35 500 – ten times higher than the need assessed by healthcare officials.
Ivano-Frankivsk and Ternopil Oblasts are also worth mentioning since in both cases the number of existing palliative patients is small (282 and 33, respectively), but difference between the “formula-based” and “official” need for palliative care seems reasonable. 17 264 (formula) compared to 13 170 (official) in Ivano-Frankivsk and 16 012 to 11 963 in Ternopil.
Conclusions and pressing issues
Our study revealed huge unsatisfied need for palliative care in Ukraine. Considerable discrepancies in data provided by regional healthcare departments indicate absence of systemic approach to the need assessment. Despite the fact that Methodical recommendations guide for assessing palliative care need was adopted in 2011, and the MoH decree No. 420 On the procedures of palliative care provision – in 2013, part of the administrative regions in Ukraine still do not follow the official procedure in assessing palliative care need. Likewise, they do not fulfil the MoH Decree No. 494 of 2015, which establishes the procedure of calculation of need in potent painkillers.
Of course, the procedural methodology is imperfect and does not account for the differences in various disease groups. Using latest WHO and UNICEF recommendations, we improved the official methodology so that different coefficients were used for specific disease groups as well as age groups in this study.
The question of reliability of primary data remains open. The analysis of mortality data verification practices by means of postmortem as well as comparison of specific mortality rates with the corresponding figures for the countries with high “death quality index” revealed unsatisfying quality of Ukrainian data. One can conclude that practices of recording the cause of death in developed countries are different from those in Ukraine.
Extremely high rate of death from cardiovascular diseases (1st position in the world) calls for further investigation on account of mass falsification of cause of death records.
As we take closer look at the discrepancies between data for prevalence of specific disease groups among children in different administrative regions another question arises: are these discrepancies really due to substantive difference in regional factors (children in different regions get sick at various rates) or we deal with mere differences in diagnosing practices of Ukrainian doctors?
Of course, not only data collection procedures call for improvement, but also methodological procedures. It makes sense to clarify the diagnostic groups, and to establish clear rules when the mortality rates, and when the prevalence rates should be used – for which diagnostic groups, age groups, etc.
The problem with data accuracy and reliability is not a theoretical one, when it comes to palliative care need assessment. Precise assessment of the need has practical implication when it comes to allocating government resources, funds and qualified personnel needed to provide adequate level of palliative care. It is also crucial in setting quotas for controlled substance purchases for pharmaceutical needs. In other words, if we fail to get real and honest figures for palliative care need, thousands of Ukrainian children and adults will be doomed to sufferings.
Currently, the attitude of Ukrainian officials to the issue of providing those in need with adequate palliative care is unsatisfactory. Thousands of people continue to suffer today, and will hardly get a chance for quality palliative care in their lifetime. The international law considers the failure of the State to provide much needed pain relief to incurably and/or terminally ill as humiliating attitude and is interpreted as torture.
Not everyone can be cured, but everyone must get help.
The study was carried out by:
- Andriy Gorbal
- Renat Nasridinov
- Oleksiy Sukhoviy
Sources of data used in the modelling:
- State Statistics Service of Ukraine (mortality data)
- State Statistics Service of Ukraine (average annual number of permanent residents, by regions of Ukraine)
- Medical Statistics Center at the Ministry of Healthcare of Ukraine (data on disease prevalence)
- World Health Organization (mortality data for different countries)
- 2015 Quality of Death Index (The Economist Intelligence Unit)
Methodology:
- MoH Decree dated 15.07.2011 р. № 420 “On approving Methodical recommendations on calculating the need of population in medical assistance”
- Global Atlas of Palliative Care at the End of Life (Worldwide Palliative Care Alliance, World Health Organization)
- Assessment of the Need for Palliative Care for Children (International Children’s Palliative Care Network, UNICEF)
Modelling was carried out in the framework of project “Valid and Reliable Statistical Reporting On Palliative Care in Ukraine”, implemented by the Ukrainian Center for Social Data with support from International Renaissance Foundation.