DIAGNOSIS-SPECIFIC MORBIDITY STATISTICS’ DATA

PROBLEMATIC ASPECTS

Based on experiences from work executed within an action

„Pilot projects on morbidity statistics”

According to the methodology specified in the guidebook„Principles and guidelines for diagnosis-specific morbidity

statistics”

Agnieszka BrośPiotr Woch

Focal points

I. General information on the diagnosis-specific morbidity statistics’ project in Poland• duration, aims, cooperation

II. National data sources – enumeration, assessment,

III. Methodology for producing best national estimates

IV. Examples & problematic aspectsV. Future steps

General information on the action

Duration: 15 November 2009 - 14 May 2011 The reference year: 2006

Aims: 1. Inventory and description of all potential national sources for

diagnosis- specific morbidity data which can be used to provide information about diseases listed in the Diagnosis-specific morbidity – European shortlist,

SHORTLIST agreed by Eurostat: 60 diseases divided into 20 groups + 1 group covering „external causes of mortality and morbidity” (accidents, assault, poisoning, complications of medical procedures, etc.).

2. Elaboration of the methodology for producing best national estimates

3. Pilot data collection and testing of the proposed methodology, taking into account the results of former Eurostat projects.

4. Preparation of the final report on the action.

Cooperation – a key issue

Centre for Health Statistics in the Statistical Office in Krakow – leading role in the project

Series of working meetings and consultations with external experts (from National Institute of Public Health, Oncology Centre, National Health Fund,

Institute of Psychiatry and Neurology, Centre for Health Information Systems)

…on all steps of the project

discussion of templates for data sources description and assessment of data sources analysis of available figures for required measures (incidence, prevalence)

Problematic issues discussed with EUROSTAT

Templates in the project

Inventory of national data sources for diagnosis-specific morbidity statistics – template for general overview of the potential data sources

Broad description and evaluation of the data sources inventoried

Relationships between the measures (items on Shortlist) and data sources (potential and finally kept)

DATA SOURCES

most important & commonly

used

Inventory of data sources for diagnosis-specific morbidity statistics (I)

First step - identification of all potential data sources

Register of tuberculosis Notifications of sexually transmitted diseases Notifications and registration of HIV/AIDS Notifications of infectious diseases, infections and

poisoning Reports of influenza cases and suspicions of the influenza National Cancer Register General in-patient morbidity study General out-patient morbidity study Psychiatric morbidity study (out-patient & in-patient)

Inventory of data sources (II)

First step - identification of all potential data sources

Database of provided health care benefits in the framework of the in-patient and out-patient specialist care – NHF (National Health Fund)

Population Health Status Survey in Poland (2004) Statistical survey of mortality Police’ databases (on road traffic accidents,

attempted suicides, crimes) Central Register of Occupational Diseases Databases on disabled people (The Social Insurance

Institution & The Agricultural Insurance Fund)

Inventory of national data sources for diagnosis-specific morbidity data (I)

DIVISION & ASSESSMENTMAIN DATA SOURCES

Name of the sourceGeneral

assessment

Register of tuberculosis 4Notification of sexually transmitted diseases 2Notification and registration of HIV/AIDS 4Notifications of infectious diseases, infections and poisoning

4

National Cancer Register 4General hospital morbidity study 4General out-patient morbidity study 4Psychiatric out-patient morbidity study 4Psychiatric in-patient morbidity study 4Database of provided health care benefits in the framework of the in-patient and specialist care - NHF

4

Reporting of influenza cases and suspicion of the influenza

3

ADDITIONAL SOURCES

Name of the sourceGeneral

assessment

The Population Health Status Survey in Poland 2

Statistical survey of the mortality 3Database on road traffic accidents 2

Database on attempted suicides 2

Database on crimes1

Central Register of Occupational Diseases 2Database on disabled people - SII 1Database on disabled people - ASIF 1

Assessment criteria: relevance, accuracy, timeliness & punctuality, accessibility & claritycomparability (geographical and over time), coherence Assessment scale: 1 - poor, 5 - very good

Inventory of national data sources (II)FURTHER DIVISION BASED ON PREVIOUS ASSESSMENT

Highest rated (mark: 4) – used during projectDATA SOURCES

Name of the sourceGeneral assessm

entRegister of tuberculosis 4Notification and registration of HIV/AIDS 4Notifications of infectious diseases, infections and poisonings

4

National Cancer Register 4General hospital morbidity study 4General out-patient morbidity study 4Psychiatric out-patient morbidity study 4Psychiatric in-patient morbidity study 4Database of provided health care benefits in the framework of the in-patient and specialist care - NHF

4

Main advantages:

• confirmation of each case through medical diagnosis

•continuity of data supply

• whole population covered

Inventory of national data sources (III)FURTHER DIVISION BASED ON PREVIOUS ASSESSMENT

Lowest rated (mark: 1-2) - rejected

Main disadvantages:

• Lack of cases’ confirmation through medical diagnosis (police’s data)

•Reference to population groups,not to general population (databases on disabled people, Register on Occupational

Diseases)

ADDITIONAL SOURCES

Name of the sourceGeneral

assessment

Database on attempted suicides - General Headquarter of Police

2

Database on crimes - General Headquarter of Police 1

Central Register of Occupational Diseases – Institute of Occupational Medicine

2

Database on disabled people – The Social Insurance Institution

1

Database on disabled people – The Agriculture Social Insurance Fund

1

Examples &

problematic aspects

EXAMPLES &

PROBLEMATIC ASPECTS

Methodology for producing best national estimates

Possible ways to approach the production of best estimates (proposed by Eurostat) and their usage during the realization of project:

a one to one relation - with a direct connection between the source and the required measure (for a position of the shortlist of diseases),

the most frequent one combination of data from various sources

only for several diseases adjustment of data source in order to find the "perfect figure”

period prevalence on the basis of „Data on out-patient and in-patient morbidity – NHF” incidence per episode on the basis of „General out-patient morbidity

study”

All calculated figures inserted in a table for data submission for Eurostat.

Tuberculosis [A15-A18, B90]

Data requirements: incidence by episode, period prevalence

Potential data sources: Register of tuberculosis, General hospital morbidity study General out-patient morbidity study Database of provided health care benefits in the framework of

the in-patient and out-patient specialist care – NHF

Incidence by episode – calculated on the basis of TB cases reported to the Register of tuberculosis

Period prevalence – calculated on the basis of data from National Health Fund

Tuberculosis – a one to one relationship & adjustment

Incidence by episode Period prevalence

NHF database

General hospital morbidity study

General outpatient morbidity study

REJECTED

APPLIED

Hospital study: only in-patients

Out-patient study: no data on out-patients cured in specialist care

All patients treated in hospitals and by specialistsNo information on GP’s patients

Register of tuberculos

isAll TB cases subjected to the obligatory reporting

Under-registration:• changeability in annual incidence

occurred – lack of stability in the scope of detecting and registration,

• insufficient knowledge about diagnostic procedures among physicians detected TB among children

Unsatisfactory proportion of cases confirmed by bacteriological tests

APPLIED

All malignant neoplasms (cancer) [C00-C97]

Data requirements: incidence by person, period prevalence (5 years) Potential data sources:

National Cancer Register (NCR) General hospital morbidity study Database of provided health care benefits in the framework of the

hospital and out-patient specialist care – NHF

NCR as a basis for calculation: Cancer incidence - diagnosis of disease with histological or cytological

symptoms or proved by imaging examination or clinic imaging. There can be a few primary cancer sites for a single person.

5-year prevalence – the number of people living with cancer disease, who have been diagnosed within the last 5 years. Total prevalence should be calculated on the basis of cancer registry data. The NCR does not possesses a long enough horizon of data (20-30 years) to determine the total prevalence, thus 5-year prevalence is applied.

All malignant neoplasm – a one to one relationship

Incidence by episode Period prevalence

National Cancer Registry

General hospital morbidity study

NHF database

REJECTED

APPLIED

Hospital study: only in-patients

Obligatory reporting: doctors → 16 regional registries (verification, completion) → NCR (next control and medical verification; publishing annual report

Estimated coverage of the NCR exceeds 85%: • before estimation: M – 63,9; W - 60,9 (in

thous.)• after estimation: M – 75,2; W - 72,0 (in

thous.)

Non-uniform under-registration across the country (high intervoivodship differences)

Registration completeness depends on the cancer site (location) and age group considered

APPLIEDNational Cancer Registry

REJECTED

No information on GP’s patients

5-year prevalence was estimated by NCR on the basis of incidence data and the 5-year survival rates calculated for the Polish population for patients diagnosed in 2000-2002

Acute myocardial infarction (AMI) [I21, I22]

Data requirements: incidence by person, period prevalence Potential data sources:

General hospital morbidity study Database of provided health care benefits in the framework of

the hospital and out-patient specialist care – NHF

Acute myocardial infarction can be diagnosed based on clinical characteristics, electrocardiographic (ECG), biochemical and pathological. The guidelines apply to people with symptoms of ischemia and persistent ST segment elevation in the ECG (STEMI). In most of these patients stated a significant increase in levels of biochemical markers of myocardial necrosis and the formation of the typical heart attack pathological Q wave (according to the guidelines of the European Society of Cardiology - ESC).

AMI – combination of data sources & adjustment

Incidence by person Period prevalence

NHF database

APPLIEDAPPLIED

General hospital morbidity study

Statistical survey on mortality

All patients treated in hospitals and by specialists in out-patient settings

No information on GP’s patientsCombination of data from 2 sources: General hospital morbidity study: number of discharged patients with AMI (including deaths in hospitals)Mortality data: number of deaths due to AMI outside the hospital (including persons not previously treated for the AMI in the hospital)

Diabetes mellitus [E10-E14]

Data requirements: incidence by person, period prevalence, point prevalence

According to „Clinical recommendations for dealing with diabetes in 2010”, diagnostics, education and treatment of diabetes are conducted mailnly in primary care by GPs and in the specialised care by medical professionals. In case of complications, exacerbations and inability to achieve therapeutic effects in an out-patient care, there is a need for in-patient treatment

As a part of the specialist care – there are made the specialist diagnostics of all types diabetes and treatment of monogenic diabetes and diabetes co-occurring with other diseases.

Both - incidence by person and period prevalence - were estimated on the basis of the General out-patient morbidity study - the only one source of data on diabetes mellitus from primary out-patient care.

Diabetes mellitus – a one to one relationship

Incidence by person Period prevalence

APPLIED

Data are provided by primary care physicians/ family doctors by whom DM is mainly diagnosed No data by sex and 5-year age groups available, only data for 0-18 and 19+ age groups

APPLIEDGeneral

outpatient morbidity

study

NO DATA SOURCE

General outpatient morbidity

study

NHF database REJECTED

No information on GP’s patientsFigure from this source 36,9% smaller than the number from General outpatient morbidity study

Point prevalence

Dementia (incl. Alzheimer disease) [F00-F03, G30]

Data requirements: period prevalence

Dementia case – recognized on the basis of clinical symptoms by a psychiatrist who orders proper pharmaceutical, psychological and psychoterapeutic treatment. Cases under consideration include: Dementia in Alzheimer’s disease [F00, G30], Vascular dementia (effect of brain infarction) [F01], Dementia in other diseases elsewhere classified (Pick’s,

Creutzfeld-Jakob’s, Huntington’s diseases, HIV) [F02] Unspecified dementia [F03]

These diagnoses can be derived from psychiatric in-patient morbidity study which is based on individual statistical cards of patients.

Psychiatric out-patient morbidity study – wider range of codes [additionally: F04, F05, F06, F07, F09]; no identification of patients (only data on the aggregated level)

Dementia – combination of data sources & adjustment

Period prevalence

NHF database (out-patients

only) Psychiatric out-patient morbidity

studyPsychiatric in-

patient morbidity study

REJECTED

NHF – patients with a diagnosis corresponding to the required range of ICD-10 codes [F00-F03, G30] – counted only once (identified by PESEL number)

Psychiatric in-patient study:• the required ICD-10 codes available, • individual records derived from

statistical cards

APPLIED

Connection of these data sources is improper

Reasons:Out-patient morbidity study – • wider range of codes than required • possibility of double-counting – a

patient using in-patient and out-patient psychiatric care in the same calendar year

• no possibility for identification an individual patient

Psychiatric in-patient morbidity study

Human immunodeficiency virus disease (HIV/AIDS) [B20-B24, Z21]

Data requirements: incidence by person, period prevalence, point prevalence

Cases of HIV/AIDS are defined in the system of reporting communicable diseases. The basis of diagnosis are clinical symptoms and/or immunological confirmation.

HIV infection – diagnosis based on laboratory criteria for HIV infection or AIDS diagnosis. There are detailed laboratory criteria for diagnosis, different for children under the age of 18 months and for the rest of people – adults, adolescents and children over 18 months.

AIDS – includes persons infected with HIV who have any of 28 clinical conditions listed in the European case definition for AIDS applied for epidemiological surveillance (European AIDS surveillance case definition)

HIV/AIDS register (notification and registration of HIV/AIDS) – was found as the best data source

HIV/AIDS – a one to one relationshipIncidence by

episode Period prevalence

Register of HIV/AIDS

Adjustment = all registered – deceased (from the beginning of registration to the end of 2005)

Under-registration of seropositive cases:• unawareness of disease• confidentiality (sum of data in age groups ≠

total)

APPLIED APPLIEDRegister of HIV/AIDS

Register of HIV/AIDS

APPLIED

Adjustment = all registered as of 30 December 2006 – deceased (from the beginning of registration to the end of 2006)

REJECTED General hospital morbidity study

Difficulties in estimation of the number of seropositive cases:• no proper indication of new (first time) cases

overestimation• no all HIV/AIDS cases are hospitalized underestimation

Point prevalence

Missing data

INCOMPLETE DATA IN AGE AND GENDER GROUPS

Incidence by episodeSum of numbers in age groups ≠

total number

HIV/AIDSThose listed on a register may retain their anonymity (age, gender)

Land transport accidents’ victims For some cases no information on age and gender

NO RELAIBLE DATA SOURCE IDENTIFIED

Incidence and prevalence Pneumonia [J12-J18] Accidental falls [W00-W19] Accidental poisoning [X40-X49] Intentional self harm (incl. suicidal

attempt) [X60-X84] Assault [X85-Y09] Medical and surgical complications

[Y40-Y66, Y69-Y84]

Period prevalence Rheumatoid arthritis [M05, M06] Arthrosis [M15-M19]

Future steps

Goal: regular morbidity data collection within the ESS

Task Force on morbidity statistics (TF MORB) was established Fit existing methodological tools to that goal by

Analysis of results of 16 pilot studies in MS (stress on quality, reliability and comparability across MS) 10 MS before 2009 (AT, CY, CZ, EE, HU, LT, LV, MT, SL, SI);

for 6 MS (BE, DE, NL, RO, PL, FI) final report sent by autumn 2011 If needed, revise the existing methodology: guidelines,

shortlist of diseases

Deliverables discussed at a Technical Group MORB meeting

Finalisation of the documents by November 2012

Thank you for the ATTENTION !!!