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

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.

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

Source: GLOBOCAN 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide in 2012

2030

40 million ?

How much is the health care burden in SA?

Last accesses 4.7.19 13:23

How many centers caring

for cancer?

How Many Consultants who care for consultants

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

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

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

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

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

We need to improve SCD, Thalassemia and other Hereditary Bleeding Disorders to be

similar to malignant ALL or CML

Cherry JG et al., 2012

Survival of SCD at risk of stroke (the majority with the current care)

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

CML responding to Imatinib is even better

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

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

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

The cost is mostly in the “Factor”

With inhibitors, the cost skyrockets

½ high

29% Incidence of

inhibitor ½ low

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

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

Source: GLOBOCAN 2012: Estimated Cancer Incidence, Mortality and Prevalence Worldwide in 2012

2030

40 million ? 9 Millions FF 3 Millions IDA Imagine

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

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

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-

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

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

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…

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

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

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?

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

30,000الشرقیة

الجنوب 31,000 in

Jizan

Why Kharj and where is the next target ?

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5

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9

10

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

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