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Optimization of Quality of care of Blood Diseases in SA
Dr Essam Al Ghamdi Consultant, MOH
Director of Hospital Affairs-MOH Pan Arab- Oman
Targeting unmet needs of national health challenges • A disease at a time: SCD & hemophilics, vWD, IDA • A region at a time: Jizan, Eastern Province, Kharj • Minimal requirement to initiate a hematology Service
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2
Overview: why and how we can make a change in MOH by MOH
!Healthcare landscape Shift to Patient-Centered & Population Based Care
!Unique Changes in SA-MOH Healthcare Delivery System
• Global-Ministerial Budgets for Hospitals• Multiple layers of oversight-auditing • Implementation Approach
• Not theory or awareness only but “hands-on, Real-life)• Now not tomorrow because patients are dying.
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The size of the problemQuantitative:
• Rate of SCD =22x USA (150 k vs 100 k) • Number of Centers for SCD: 0 “Zero” • In Bahrain, SCD center cares for ~5,000 • To be like Bahrain needs > 30 Centers
Qualitative: • No specialty is responsible for SCD
(IM, Gen Ped vs FM vs Hem) • # of fellows trained abroad in
Hbpathies out of 40: 0 • Mindset/Medical Culture: SCD is
not sub-specialization • Hem Consultants at Central
Hospitals are enough to cover SA • No Nurse Hem Subspecialization.
• vWD= 1.5% amongst Saudi➔ 400,000 cases ~ 1/2 are considerably manifest.
• ~ 1.9% (>450,000) adolescents & young adults have >= 1 bleeding disorder.
• >3300 Hemophilia cases; 900 Inhibitors • 1/3rd pregnant ladies have IDA
• Owaidah T et al., Advances in Hematology 2018 , Huton E Nov 2019 , Owaidah T , AlMoemen A , AlZahrani H et al. 20 17
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Source: GLOBOCAN 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide in 2012
2030
40 million ?
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How much is the health care burden in SA?
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Last accesses 4.7.19 13:23
How many centers caring
for cancer?
How Many Consultants who care for consultants
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Figure 8. A hypothetical cohort of 1000 children with SCA and strokes followed for 5 years receiving either no therapy, hydroxyurea therapy, or regular blood transfusion therapy. The figure depicts the number of children in the cohort with stroke recurrence in the no-treatment group, hydroxyurea therapy group, and regular blood transfusion therapy group with expected incidence rates of 29.1 (95% CI, 19.2-38.9), 3.8 (95% CI, 1.9-5.7), and 1.9 (95 CI, 1.0-2.9) events per 100 patient years, respectively.15
How Much we can help !? • If nothing is done to stroked SCD: ➔ 77% re-stroke
again in 10 Y . ✓ With HU➔ 17.3 % will re-stroke . ✓ With Transfusion, 9% only re-stroke
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Survival rates of children with SCD to the age of 5 years Diagnosed via neonatal screening vs. no screening (registry)
Weatherall DJ et al., 2006 Banu Aygun& Isaac Odame,. Pediatr Blood Cancer 2012;59:386–390
This will be the survival of our children to the age of 5 if we do Not start
Now comprehensive
Centers or clinics for SCD. We will be less than Benin R
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WHO region
Estimated annual births β thalassaemias Transfusion
No. of known patients
Adequate iron chelation Inadequate or no iron chelation
% with chelation No. with chelation
No. of patients Annual deaths due to iron
overload
Total Transfusion-dependent
% of Tx-dependent patients transfused
Annual deaths because not transfused
African 1 386 1 278 2.7 1 243 – – – – –
American 341 255 52.4 1212 750 58 1 604 1 146 57
EMRO 9 914 9 053 17.8 7 44339 700 27 10 818 28 882 1 444
European 1 019 920 15.5 78016 230 91 14 754 1 476 74
South-east Asian 20 420 9 983 9.6 9 02135 500 19 6 621 28 879 1 444
WesternPacific 7 538 4 022 2.7 3 9143 450 44 1 504 1 946 97
World 40 618 25 511 11.7 22 52297 630 39 37 866 59 764 2 988
a All figures are minimum estimates.
Global epidemiology of hemoglobin disorders and derived service indicators
- Bernadette Modell, Matthew Darlison Volume 86, Number 6, June 2008, 480-487
- Bulletin of the World Health Organization
97%
75%
No comprehensive
transfusion program for sickle cell or thalassemic
diseases means death for the
majority
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0
25
50
75
100
10 Y 15Y 20 y 25y
• 1985-97•1980-84•1975-80
Survival of thalassemia : an Italian success story
Borgna-Pignatti C et al., Ann NY Acad SCI 2005 Said Yousuf Mohamed, 2018
1970-74
1965-69
1960-64
Cooley”s 1920s
Improved survival due to Transfusion+ Chelation OR/+ Transplantation
Surv
ival
%
Occasional Transfusion
Unsafe regular Transfusion
safe Transfusion-Chelation
Comprehensive care
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Factors contributing to death (Prognosis)Disease based Health care-based
• Transfusion dependence • Availability-Accessibility-compliance
• Chelation • Availability-Accessibility-compliance
• Hepatic fibrosis • Early diagnosis &prevention
• HCV &HBV Infection • Vaccination programs
• HIV • Transfusion standardization
• Pulmonary HTN • Patient/care giver education
• Cardiac involvement • Global effect
Hepatic fibrosis
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We need to improve SCD, Thalassemia and other Hereditary Bleeding Disorders to be
similar to malignant ALL or CML
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Cherry JG et al., 2012
Survival of SCD at risk of stroke (the majority with the current care)
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10 Y OS for 2852 children with newly diagnosed ALL who were enrolled in 15 consecutive Total Therapy studies at SJCRH 1962-2007
Pui CH , Evans WE Semin Hematol. Semin Hematol. 2013 July; 50(3): 185–196
Survival of acute lymphoblastic Leukemia
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CML responding to Imatinib is even better
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SCD in Saudi Arabia 2020-2030
1. Sickle Cell Disease 2. Thal Major 3. Hemophilia A, B &C 4. vWD 5. HLH 6. IBMFS
Leukemias
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SCD in Saudi Arabia 2020-2030
1. Sickle Cell Disease 2. Thal Major 3. Hemophilia A, B &C 4. vWD 5. HLH 6. IBMFS
Leukemias
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Hemophilia: Challenges vs Solutions1. How Much(registry)??? 2. Identifying cases ASAP to avoid morbidities 3. Starting factor replacement ASAP 4. Making the Hematology service available
• Diagnostic tests (factor assay) in the lab • The “factor” in the pharmacy
5. Inhibitor problem • Identifying Inhibitors
• Cost of treatment
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The cost is mostly in the “Factor”
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With inhibitors, the cost skyrockets
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½ high
29% Incidence of
inhibitor ½ low
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SCD in Saudi Arabia 2020-2030
1. Sickle Cell Disease 2. Thal Major 3. Hemophilia A, B &C 4. vWD 5. HLH 6. IBMFS
Leukemias
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IDA : The size of the problem
Hwalla N., et al. “The Prevalence of Micronutrient Deficiencies and Inadequacies in the Middle East and Approaches to Interventions”. Nutrients 9.3 (2017): E229, de Benoist B., et al. 2008
Quantitative • 32% • 32.3%
Distributive Peripheral hospitals are:
less served Less surveyed
( 2-3 adm/d for IV Fe @ CMH-Kharj)
Qualitative: • No specialty is responsible for
IDA (IM vs Gyn/Obest) • # fellows trained abroad in
General Hem out of 40: 0 • Mindset/Medical Culture: IDA
is just IV Fe or PO Fe • Transfusion of severe IDA • Admit for IV Fe: no Day Care
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Source: GLOBOCAN 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide in 2012
2030
40 million ? 9 Millions FF 3 Millions IDA Imagine
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73% Al-Ahsa
39%
32%
40% Al-Khobar
• Abdelhafez AM and El-Soadaa SS . Pakistan Journal of Nutrition 2012 • Taha A., et al. African Journal of Traditional, Complementary and Alternative Medicines 2014, • Mahfouz AA., et al., The Southeast Asian Journal of Tropical Medicine and Public Health 1994, • Rasheed P., et al. Annals of Saudi Medi 2008.
Kharj ????
2-3 Adm/w 50 adm/mo
>600 adm/year
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Blood Care: 1970-2019
2020
A Transformative year
Our Path Forward
kharj
Jizan
East
Unmet needs and goals for quality care now:
A blood center for each state A hematology team/ city A hematology lab/region A hematopath lab/region
• M&M for each hospital. • M&M for every region.
• Preventive • Pre-emptive • Corrective
• A coagulometer/hospital • ECP for each hospital >100 SCD pt/year. • CE-HOPE-AV To Cure Sickling in 3 regions
(Jizan, Sharkiya, Kharj) • Hemostasis & Thrombosis CTR/Region
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Major Quality indicators in Blood Diseases 3Ts
•Territorial – Each region the district has a CCC for Blood diseases –Each district should have a center for blood diseases
•Teams –A minimum of specialized consultant/central hospital. –A minimum of 1 Hem team/ Central Hosp./region –A minimum of Hematology Specialized Lab/region
•Twinning –Between Hospitals/centers (KFMC+5 large Hosp), locum (Op. M) –Between institutions for Referral, Research, education, Training –Between Societies (SAPHOS) & HOH hospitals
MCH-Kharj Ped Unit: 2 rooms
Gyn-Obs Service: 2 beds Women’s U nit: Day care-
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Disease specific care Goals
General •Reduced mortality •Reduced morbidity • Improved QOL • Improved service utilization •Reduced costs
Disease-specific –SCD • ACS, Stroke reduced by 80% • Hospital admissions reduced by 80% • Prenatal screening 95% • Premarital screening 95% by 2030 • 70% on Hudroxyurea • Exchange transfusion available within 50km • 90% up-to-date vaccinated • 70% full time job. • National SCD registry is complete by 2022 –BLEEDING DISORDERS • Factor level measured routinely • Factor supply is available within 50k radius • hemophiliacs &vWD registry complete 2022
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Indicators of quality of care •% of patients in a registry
–The percentage difference between the observed vs Expected SCD incidence, Hemophilia A incidence (should be close to zero if all patients are reported and followed to a national agency
•Ratios of SCD Centers: patients with SCD (1:5000), HA 1:50 •% of patients on a comprehensive program with SCD card •% of patients on transfusion program in each hospital •% of patients on a chelation program –Should be close to 100% of all transfused patients
•The % of SCD consuming ER visits vs Periodic Clinic visits: –Should show a trend of drop by 20% yearly
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Urgent vs. Strategic solutions
SCD Comprehensive program Blood Centers-Ambassador program • Minimal drugs • Minimal machines
• Prevalence data • Outcome data . • Big data (Registry)
Payment reform/Value care - Copayment with free choice (Auditing) . - Commissioning Private care per diagnosis - Operational Management of Private Units - Training Centers & Program for Blood Dis
Patient engagement Counsellor-Coordinator
Educators- Case Manager Screening-Consult clinic…
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Satisfaction of Minimal unmet needs of Patients with blood diseases
• All MOH services accessible by any referral Letter, ERs 24/7
• Current status: • Anti-McDonalism
• Solutions: 1. Go Locoregional
Hem Team/500k 2. Go COE/CCC COE or CCC/1 million
Accessibility Affordability
• Medicaid-like • Medicare-like • Premium
Hospitals (network).
• Hem Team/500k population • Diagnostics:
• Hem Lab/500k • Treatment:
• Minimal drug list • Fast Track Referral
• Living: Guidelines • Died/c: M&M Loco-regional
Quality
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Major Quality indicators in Blood Diseases 3Ts
•Territorial – Each district has a center for blood diseases –Each region hf the district has a CCC for Blood diseases
•Teams: kaizen –A minimum of specialized consultant/central hosp. –A minimum of Hem team/ Central Hosp/region –A minimum of Hematology Specialized Lab/region
•Twinning & Transformation –Between Hospitals/centers –Between institutions for referral, Reseearch
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Painful crises-hyperhemolysis-Sequestration Crisis
Rec. admissions-transfusions-narcotics
Recurrent infections
Strokes, SBI/SCI, mental
ACS & Pulmonary HTN/ Thrombosis
No jobs
No marriage
How SCD patient live?
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MOH Backing Up MOH Facilitation
Practical Solutions &Now مبادرة : دمك وقاية ورعاية
An Ambassador (an experienced
hematologist)
Limited Upgrading of Lab & BB (for Focused Blood Work)
Minimal drugs
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30,000الشرقیة
الجنوب 31,000 in
Jizan
Why Kharj and where is the next target ?
1
2
2”3
4
4
5
6
7
9
10
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MOH Backing Up MOH Facilitation
Solutions on the ground &Now البداية : م الوالدة واألطفال بالخرج
Minimal Drugs
Anticoagulants Hydroxyurea . Chelating drugs IVIG .
Limited Upgrading of Lab • Coagulometer • PB Smear Reaading • BMBx ➔referral with
affiliated hospital • ECP-Machine for SCD
• Sickle Cell CLinic • Women Blood Clinic • 2 beds for IV iron • 2 beds for Ped hem
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Services: Ladder of real Success via service
SCA clinic➔2 beds for admission
WBC: Women Blood Clinic ➔ IV Iron Infusion Clinic
Neonatal Screening + Premarital screening+
Family Counselling program
Day Care-Transfusion Center; Exchange Tx Program
Sickle Cell Research Center Center of excellence in SCA
COE Hemostasis &Thrombosis Kharj