Inherited Bleeding Disorder Comprehensive Care Centres / Standards of Care

Impact on Quality of Care and Health Outcomes

David Page

National Executive Director

Canadian Hemophilia Society

CORD Rare Disease Day Conference

March 5, 2015

Inherited bleeding disorders

Bleeding disorderNumber registered in

centres*Incidence

Hemophilia A 3094 1 in 10,000

Hemophilia B 869 1 in 40,000

Von Willebrand disease 4184 1 in 1000?

Rare factor deficiencies (I, II, V, VII,

X, XI, XIII)1517

1 in 100,000 to 1 in 5,000,000

Platelet function disorders

954 Very low

* Data from 2013-14 CHS centre resource assessment

Inherited bleeding disorders

Severity of bleeding

symptoms

Hemophilia A and B

von Willebrand disease

Rare factor deficiencies

Platelet function

disorders

Joints ✓✓✓

Muscles ✓✓ ✓

Bruising ✓ ✓ ✓✓ ✓

Vital organs ✓✓ ✓✓✓

Mucosal ✓ ✓✓✓ ✓ ✓✓✓

Menorrhagia ✓ ✓✓✓ ✓ ✓✓

Post-trauma ✓ ✓ ✓✓✓ ✓

Surgical ✓ ✓ ✓✓ ✓

Lacerations ✓✓ ✓ ✓✓

Comprehensive care centres

5 pediatric centres5 adult centres15 combined ped-adult centres

Comprehensive care

Hemophilia Care 

“Medical care for hemophilia is specialized. A person with hemophilia must receive care from healthcare

workers who have expert knowledge of the bleeding disorder. The wide-ranging needs of people with

hemophilia and their families are best met through Hemophilia Treatment Centres rather than by

individual doctors.”

- World Federation of Hemophilia: Organizing a National Programme for Comprehensive Hemophilia

Care.

Comprehensive care

Hemophilia Care 

“Medical care for hemophilia is specialized. A person with hemophilia must receive care from healthcare

workers who have expert knowledge of the bleeding disorder. The wide-ranging needs of people with

hemophilia and their families are best met through Hemophilia Treatment Centres rather than by

individual doctors.”

- World Federation of Hemophilia: Organizing a National Programme for Comprehensive Hemophilia

Care.

Comprehensive care principles*

• Improved quality of life

• Collaboration among HTCs and networks needs to be encouraged

• Bleeding disorders are associated with a number of complications… and so care needs to be comprehensive.

• Evaluation of clinical outcomes is essential.

• Standards of care are needed and should be audited.

• Accountability for utilization of coagulation therapy is necessary

• Regional differences within the province or region must be acknowledged in the provision of care.

* CANADIAN COMPREHENSIVE CARE STANDARDS FOR HEMOPHILIA AND OTHER INHERITED BLEEDING DISORDERS, First Edition, June 2007

Health outcomes

“A two-year study of 40 children in Montreal indicates that home care treatment of bleeding episodes, supported by a comprehensive care centre, reduces hospitalizations by 85%, arrests the development of severe hemorrhages and reduces costs by 85%.”

Health outcomes

“A two-year study of 40 children in Montreal indicates that home care treatment of bleeding episodes, supported by a comprehensive care centre, reduces hospitalizations by 85%, arrests the development of severe hemorrhages and reduces costs by 85%.”

(Dr. Hanna Strawczynski, MD of Canada, October 1972)

Health outcomes

“Patients who used both home therapy and received care in HTCs* had the highest probability of avoiding hospitalization for bleeding complications during the follow-up period.”J. M. SOUCIE et al, Haemophilia (2001), 7, 198±206

“Those persons who had received care in an HTC had a 40 percent decreased risk of morbidity and mortality.”J.M. Soucie et al, BLOOD, 15 July 2000 • Volume 96, Number 2

*HTC – Hemophilia Treatment Centre

Comprehensive care

1. Provincial designation

2. National patient registries

3. Self/family administration of therapeutics

4. Patient, family and association involvement in care

5. Education of patients, families and health care providers

6. Standards of care and portability

7. Decentralization through outreach

(Adopted by Network of Rare Blood Disorder Organizations, 2006 conference)

Comprehensive care

8. Inter-disciplinary care

9. Defined core services delivered by a comprehensive care team

10. Program evaluation and accreditation

11. National collaboration

12. Post-marketing surveillance

13. Collaborative research

14. Flexibility in organization

(Adopted by Network of Rare Blood Disorder Organizations, 2006 conference)

Hemophilia/IBD standards of care

Adopted in June 2007 after interdisciplinary study by…

Association of Hemophilia Clinic Directors of Canada

Canadian Association of Nurses in Hemophilia Care

Canadian Physiotherapists in Hemophilia Care

Canadian Social Workers in Hemophilia Care

Canadian Hemophilia Society (patient organization)

Standards of care document

• Principles of care• Populations served• Definition of core team members (MD, RN, PT, SW,

admin/data)• Definition of extended team members (e.g. OB-

GYN) • Services provided• Responsibilities of an HTC• Standards

• Scope of care & key indicators• e.g Establish and maintain a full complement of core team

members• Quality measures & key indicators

• e.g. Participate in data collection• Therapeutic services & key indicators

• E.g. Have sufficient number of assessment clinics

Assessing standards of care

2007: Standards adopted2009: Self-assessment of standards by 22 of 24 HTCs2009: Standards found to be realistic, useful, acceptability judged high, and appropriate to be used for external accreditation (audit)2010: External audit process developed based on

similar process used by HTC networks in U.K. and Ireland

2011-2012: Audit process delayed by hospital patient privacy issues

2013: CHS developed own “centre assessment” process based on work done by its Quebec Chapter

Centre assessments

In three parts:

1.In-person interviews with all core team members in 24/25 centres across Canada (approximately 150 people) to assess their capacity to respect standards of care

2.Data collection on numbers of patients and FTEs of core team members

3.In-depth, anonymous patient satisfaction survey sent to a random sample of patients (400 responses)

Centre assessments: deliverables

20 individual centre assessments (plus a collective assessment for 4 Quebec centres) with…

• HTC strengths • HTC weaknesses • Assessments of human resource needs• Assessments of physical resource needs• Patient observations and appreciation • Recommendations to HTCs, hospitals and

Ministries of Health

Centre assessments: key observations

• Most centres have insufficient human resources to respect standards

• Many centres have insufficient physical resources (space and time) to properly conduct clinics

• Core teams are not complete in some centres (e.g. no dedicated physiotherapist or social worker)

• Many centres do not have adequate resources to collect and act on health outcome and factor utilization information

• Patients are overwhelmingly appreciative of the services and care they receive!

Centre assessments: deliverables

A national report (to be published in June 2015) including…

•Common strengths•Common weaknesses•Recommendations that apply across Canada•Data:• Ratios of FTEs in each centre by discipline per

100 patients with hemophilia A and B• Comparison of the cost of coagulation

therapies to the cost of delivery of care (staffing, procedures, hospital admissions, lab work…)

Centre assessments: advocacy

• Delivery of final centre assessment reports to centre staff and provincial chapters of CHS (✔)

• Meetings with local chapters and centre staff to develop local advocacy plans

• Meetings with local and provincial health officials, where needed

• Meeting with Provincial / Territorial Blood Liaison Committee

The concept of comprehensive care for inherited bleeding disorders, based on standards of care, is

accepted and widely adopted in developed and developing countries around the world …

… and is waiting to be widely copied by other rare disorders!