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Presentation at the
Neuroscience Institute King Fahad Medical City on Saturday June 2, 2011 By
Dr Omar Hasan Kasule
MB ChB (MUK), MPH (Harvard), DrPH (Harvard)
Background to the project
·
Accurate epidemiological data is needed to
provide care for acute and chronic neurological disorders.
·
Calculation of clinic space, physician training
programs, acute and chronic hospital beds, and specialized neurological
programs are all dependent on correct epidemiological data.
·
Current methods of provision of care are based
on acute need. Calculation of any future need must be based on accurate
epidemiological data and census reports.
·
The Saudi Ministry of Health has placed
neurological diseases as prime concern and has planned to run 5 Neurological
Centers of excellence to serve the different regions of the Kingdom of Saudi
Arabia. Accurate epidemiological data is needed to calculate the needs of these
patients
·
To date only one community-based
neuro-epidemiological trial was done in Saudi Arabia in 199331.
Headache:
·
Systematic review: headache 8-12%, tension
headache 3.1-9.5%, migraine 2-6-5% these rates being lower that for Qatar and
Oman[1].
·
A questionnaire study of 1770 high school
students at National Guard schools in Riyadh revealed that one third
experienced recurrent headaches not related to febrile illness[2].
·
A retrospective study of 1686 patients in Western
Saudi Arabia revealed a headache prevalence of 9.7% being higher in females[3].
·
Headache was recorded in 21.6% of hand phone
users[4]
Epilepsy in adults:
·
A literature review showed prevalence of
epilepsy in Saudi Arabia to be 6.5/1000[5].
·
The most common type of epilepsy at age 60 and
above was symptomatic epilepsy with stroke as the
leading cause[6].
·
A study at a West Saudi Arabian hospital showed
that 69.3% of epilepsy cases in patients aged over 60 years were post stroke[7]
Epilepsy in children:
·
Prevalence of epilepsy in children was 4-8 cases
per 1000 children[8].
·
These numbers were likely to be under estimates
because of limited awareness of epilepsy as an organic disease that needs
treatment in hospital for example over 40% of school teachers and students
believed that epilepsy was caused by possession by the jinn[9].
·
Under-diagnosis is also likely because of
shortage of pediatric neurologists and limited training of general
pediatricians in neurology despite the fact that 28.5% of pediatric complaints
were neurologic[10].
Stroke in adults:
·
A systematic review for all Arab
countries showed that for Arab countries the annual incidence of stroke was
27.5-63 per 100,000 population and prevalence was 42-68 per 100,000 population[11].
·
A systematic review for Saudi Arabia showed a
stroke incidence in Saudi Arabia of 29.8 per 100,000 of population[12].
·
A study at the Humanitarian city in Riyadh
showed higher incidence of stroke in the 51-60, 61-70, and 71-80 age groups,
and lower in the 20-30 and 31-40 age groups[13].
Stroke in children:
·
The annual hospital based incidence of stroke was 27.1/100,000 in the pediatric age 1 month – 12 years[14].
·
Hospital data is an
under estimate of the actual population incidence.
·
Risk factors of stroke
were identified as hematologic[16] and inflammatory disorders
of the circulatory system[17].
Multiple sclerosis:
·
A systematic review
showed MM incidence varied widely in the Arab world 4-42/100,000 of population[18].
Meningitis in adults:
·
Meningitis spikes
during the hajj season, 42% were among
overseas pilgrims 58% were among the locals.
Meningitis in children:
·
A 5 year surveillance
study of 171,818 children under the age of 5
years found 208 cases of bacterial meningitis[22].
·
Meningitis due to
Hemophilus influenzae, constituted a large percentage of childhood meningitis
in the Kingdom of Saudi Arabia[23].
Epidemiology of psychiatric and mental disorders in Saudi Arabia: MOH
statistics 2009
·
Nervous system visits 43625
·
Psychiatric new outpatient visits 11232
·
Psychiatric repeat out patient visits 59306
·
Psychiatric in-patient visits 1055
·
Psychiatrist repeat inpatient visits 1240
·
Mental department outpatients 70538
·
Mental department inpatients 2295
·
Deaths from nervous system conditions were
reported as 393 among Saudis and 111 among non-Saudis.
·
2 deaths from mental disorder both Saudi.
Objectives of the project: short term
·
Enumeration of incidence and prevalence of
disease.
·
Crude and age-adjusted rates are needed, because
of the relatively young age of the Saudi population. More appropriate
comparisons with international data can be made with age-adjusted rates.
·
More accurate calculations can be made for
policy makers to serve these specific diseases.
·
Risk factors can also be ascertained by
collection of patient characteristics, and associated risk factors. Novel risk
factors can also be ascertained using questionnaire, exam and laboratory
techniques.
·
Lifetime migration status, education, genetic
background, genetic analysis, proteomics, family history might shed light to
possible risk factors of disease.
Objectives of the project: long term
·
Assessment of specific disease progression
(natural history) and prognosis, access to care, analysis of local diagnostic
and treatment techniques and cost analysis.
·
Social issues including effects of disease on
the patients and families socio-economic and psychological burden can also be
measured.
·
Identifying common characteristics (novel risk
factors) that contribute to the development of neurological diseases.
·
Branching of sub studies to include
non-neurological diseases could be achieved more easily after the study has
progressed to a more solid base.
·
Intervention studies: randomized clinical trials
and randomized community trials
Experiences of research in defined areas: Advantages
·
The basic socio-demographic data is available on
the population
·
The inhabitants are co-operative because they
are used to medical professionals visiting their homes and collecting
information
·
There is a cadre of trained resident research
assistants who will facilitate any research project (d) the health
professionals in the area are cooperative being part of the project.
Framingham, Massachusetts, USA:
·
Initially 5209 individuals aged 30-62 years were
recruited. Starting in 1948 they returned every for physical and laboratory
examination.
·
In 1971 a second cohort was recruited consisting
of children of the original cohort and their spouses.
·
A third cohort was recruited in 2002 consisting
of grandchildren of the original cohort.
·
The study established the major risk factors of
cardiovascular disease as hypertension, high cholesterol, smoking, obesity,
diabetes mellitus, physical inactivity in addition to age and gender.
·
The study produced over 1200 published articles.
Follow up of the original Framingham cohort has been fairly complete even after
their migration to places outside Massachusetts.
·
The biological samples collected have been
analyzed for new parameters that were not envisaged in 1947.
Kasangati, Central Uganda:
·
The Kasangati defined area in Central Uganda has
been used as a teaching and research community for the Makerere University
College of Medicine since the 1950s.
·
The population covering two generations is used
to students and researchers with cooperation with strangers visiting homes,
interviewing, or carrying out physical examinations.
·
Kasangati is located 14.5 km north of the
capital city of Kampala
·
According to the
University website it undertakes 3 main functions: teaching public health to
medical students and other allied staff; serving as a research centre in
teaching public health in the community, and providing basic health services to
the community.
·
Kasangati Health
Centre is therefore a resource for the tripartite functions of training,
research and community service at MUSPH.
·
The Centre is run by
a doctor and 5 allied health professionals. Over the years a lot of
research has been carried out at Kasangati: Molecular markers[24],
sexually transmitted infections[25] [26] [27],
health statistics[28] [29] [30],
psychiatric morbidity[31],
nutrition[32] [33]
community strategies[34],
and family structure[35].
North Karelia, East Finland:
·
North Karelia is a district in the East of
Finland with an area of 21584 square kilometers and a population of 166,500
(2009).
·
The North Karelia project was launched in 1972
to intervene against risk factors responsible for the high mortality of
cardiovascular disease in the area. The project was based risk factors
identified by the Framingham Heart Project[36].
·
It was collaboration between national health
authorities and the World Health Organization.
·
In 1995 the project had succeeded in lowering
cardiovascular mortality by 75%. The study was extended to the national level
also included other non communicable diseases.
Other projects in defined areas:
·
dialysis equipment failure in Connecticut[39],
·
substance abuse and psychosis in the UK[40],
·
the burden of respiratory virus infection[41],
·
surveillance of colorectal cancer in patients
with ulcerative colitis in the Ornsköldsvik defined area of Sweden[42],
·
the epidemiology of gastro intestinal bleeding
in a defined area of Greece[43],
·
the epidemiology of thrombocytopenia in
Copenhagen county[44],
·
intervention against psychotic disorders in
Montreal Canada[45],
·
epidemiology of hepatitis viral infection in
Crete[46],
·
the epidemiology of seizures in the Corfu
district of Greece[47],
·
the epidemiology of ruptured abdominal aneurysms
in the Pirkanmaa area of Finland[48],
and many others
Common characteristics of studies in defined areas:
·
The defined areas were sited near big cities.
·
They were defined clearly in geographical terms
or they were defined in terms of catchment areas of selected hospitals.
·
The base population was very variable ranging
from 10,000 to 500,000.
·
The projects were carried out by academic or
health services organizations with the necessary scientific expertise.
·
Virtually all types of studies were carried out:
Laboratory-based studies, Statistical studies, Observational epidemiological
studies, Interventional epidemiological studies
·
A major advantage of research in a defined area
was availability of a data base on the population enabling computation of
population based parameters.
Criteria for a defined area
·
Clear natural geographical boundaries,
·
Distance of at least 50 kilometers from the town
center of the national capital of Riyadh (c) on a main highway,
·
Culturally homogenous permanent resident
population of at least 50,000 with minimal in and out-migration,
·
Most of the community receives its primary care
at health facilities within the area
·
Has at least 1 public health facility (hospital
or health center) that will host the research team and house the data base.
Procedures of selecting a defined area
·
Collect e socio-demographic as well as public
health data
·
Meet and seek the cooperation of local
political, health, and community leaders
·
Inspect the public health facilities and assess
public health manpower resources
·
Undertake short pilot surveys to assess
acceptability of field research to the population
·
Use a Likert scale (individual and add) 1=very
low, 2=low, 3=fair, 4=high 5=very high.
·
A 3-day workshop with representatives of all
potential stakeholders of the project
Socio-demographic background data:
·
Distances (Distance from Center of Riyadh;
Distance from edge of Riyadh; Distance from KFMC),
·
Population distribution (% urban area, %
semi-urban area, and % rural or desert),
·
Population according to the last census (Total
Population, Population Male, Population Female, Population Saudi, Population
Non Saudi, age distribution),
·
Number of schools ( Elementary, Intermediate,
and Secondary),
·
Number of Higher Education Institutions
(Technical, Colleges, Universities),
·
Employment (Government, Private, Self employed,
Unemployed), Type of work (Office, Factory, Transport, Agricultural,
Commercial)
Health-related data:
·
Crude birth rate 09
·
Pop growth rate 09
·
Tot fertility rate
·
Deaths
·
Life expectancy Male and Female
·
# Health Centers, # Hospitals,
·
# beds, # psychiatric and neuro beds,
·
# physicians, # nurses, #pharmacists, # allied
health personnel, # technical personnel,
Questionnaire for the field visit team:
·
Geography: Clear natural geographical
boundaries, Distance from Riyadh Center, Travel time from Riyadh Center,
Location on a main highway,
·
People: Total population, Cultural homogeneity
of the population,
·
Economy: Stability of the economy, % of residents who work within the area, % of permanent residents, Out and in-migration,
·
% receiving primary care in the area,
·
Cooperation: Political officials cooperation, Health
officials cooperation, Community leaders' cooperation,
·
Population receptivity to research,
·
Prevalence of neurological diseases
Initial selection
·
Riyadh City (5,254,560),
·
Kharaj (376,325),
·
Dawadimi (217,305),
·
Majmah (133,275),
·
Quwa'iyah (126,161),
·
Wadi al Dawasir (106,152),
·
Dir'iyah (73,668),
·
Aflaj (68,201),
·
Zulfi (69,393),
·
Afif (77,978).
Initial eliminations
·
Riyadh City was eliminated because its
population was too big, not homogenous, and had high in and out-migration.
·
Kharaj was eliminated because it was too
urbanized cf Riyadh
·
Wadi al Dawasir was eliminated because it was
too far away (more than 700 km).
The study population
·
100-200 cases will satisfy most sample size
needs
·
Headache 8-12%, 9.7% {approx 10%} will need approx1-2K
population
·
Adult epilepsy 6.5/1000 {approx 7/1000}will need
approx 15-30K population
·
Child epilepsy 4-8 cases per 1000 {approx
6/1000}will need approx 15-30K population
·
Adult stroke 29.8 per 100,000 {approx
30/100,000}will need approx 350-700K
·
Child stroke 27.1/100,000
{approx 30/100,000}will need approx 350-700K
Basic needs
·
Health care professionals with understanding of
the current disease process, treatment and prognosis,
·
Professionals in study design and analysis
·
Willing cohort (with local governmental support)
·
Field workers and a funding agency
·
key strategic governmental and non-governmental
stakeholders (individuals and agencies) and beneficiaries prior to study design
and implementation; these include:
The project infrastructure
·
Official authorizations, securing the budget,
and getting the collaboration of the local administrative and health officials,
·
Project team at the Neurosciences Institute,
KFMC: project director, an administrative coordinator and a research
coordinator.
·
A steering committee will be set up chaired by
the project director to set policy and follow up the implementation.
·
A map of the area will be made using Google
earth. Houses and health facilities will be numbered. The Google map will be
reviewed every year to update new constructions.
·
Health personnel in the area will be recruited
as part-time research assistants. They will be trained about research
activities.
Project Office
·
A project office will be set up at a spare room
in one of the health facilities.
·
A permanent research assistant will stay at the
office with the following functions: (a) managing and updating the project
data-base by collecting all relevant new information from the health facilities
and patients (b) assisting researchers who will be working in the defined area
(c) payment of allowances and other local expenses related to the project
Initial survey
·
A general health survey will be carried out in
the area to obtain basic socio-demographic and health data.
·
A questionnaire will be used and basic health
indicators will be measured such as height, weight, blood pressure etc.
·
A check list of previous health conditions will
be used.
·
Each member of the household will be assigned a
project ID so that data can be linked later.
·
The health survey will be repeated once a year
but if this is inconvenient, the repetition will be every two years.
Data capture: virtual health data base in the area.
·
Health facilities in the area as well as
referral health facilities in Riyadh
·
Telephone questionnaires for patients at regular
intervals
·
Regular physical and laboratory measurements of
vital data from patients using kits supplied to them for use in their homes.
Some of the measurements that can be carried out include: muscle movements,
sleep patterns, blood pressure, weight, urinalysis for sugar and other neuronal
degenerative compounds, etc.
·
The data will be transmitted directly to the
data center using hand phones.
Project research
·
Ongoing epidemiological surveillance: Incidence,
prevalence, and natural history of common diseases, Complications, morbidity,
mortality, and survival, Risk factors will be studied using various study
designs: cross sectional, case control, and follow up.
·
Studies to test specific hypotheses: Studies of
specific scientific hypotheses will generally include a combination of clinical
and laboratory studies that will have the unique feature of being
population-based.
·
Intervention studies: Interventional studies
will be carried out as community trials or as hospital based therapeutic
trials.
Project Funding
·
Funding can start with intramural funding within
the King Fahad Medical City (the Faculty of Medicine and the Research Center)
to start the pilot project.
·
Later funding can be from the King Abdulaziz
City for Science and Technology,
·
Ministry of Health,
·
Local University or city and through
philanthropic individuals or foundations.
·
International funding/collaboration
References
31Neuroepidemiology. 1993;12(3):164-78.