1. NATURE AND SCOPE OF THE HEMOPHILIA NURSE John C
NATURE AND SCOPE OF THE HEMOPHILIA NURSE John C. Urgo RN, BSN Rush Medical Center USA

2. Mission Statement of an HTC
The goal of an HTC is to foster self-supporting and self- sustaining behavior in patients with hemophilia and associated bleeding and clotting disorders. We believe the use of aggressive preventive measures, such as patient and family empowerment, home therapy, factor prophylaxis and promotion of joint health will decrease patient morbidity and mortality, promote integration of the patient into the community, and enhance quality of life.

3. Needing to Moving Forward
Most hematologists focus their practice on malignant diseases and only provide care for patients with bleeding disorders out of necessity.
Competence and the ability to provide multidisciplinary care to patients with Hemophilia is lacking in many areas of the country and the world.

4. CLINICAL PRACTICE: EDUCATION
BLEED IDENTIFICATION
Joint
Muscle
Soft tissue
Nose
Mouth
ASSESSMENT
Bruising, Swelling, Warmth, Range of Motion
TREATMENT
Determined by
Type of bleed
Available blood products

5. Daily Nursing Duties Scheduling patients for clinics.
Room patients, VS, history, immunizations, confirm medications, social issues and school issues.
Triage phone and message pool calls, return pages.
Education an re-education daily as well as reinforcement of said education.
Meeting with other clinic staff on a inpatient level regarding patient care.
During Comprehensive Clinic visits the following clinical needs are assessed and discussed with the clinical care team. (i.e. Dental, Physical Therapy, Pharmacy, Nutrition, Surgery, Psychosocial, Genetics, Pain management )
Teach patients, parents and caregivers to infuse on their own.

6. NURSES ROLE: EDUCATION
Bleed Management
Pharmacologic
Factor
Amicar
Non-pharmacologic
Rest, Ice, Compression, Elevation (RICE)
Pain Management
Analgesics
Narcotics

7. SIGNS & SYMPTOMS OF Bruising
Very common
Rarely dangerous
Treatment may not be required
For severe bruising, use an ice pack
Contact parents if needed.
May look unsightly and lead to teasing, body image sensitivity or suspicion of child abuse.

8. SIGNS & SYMPTOMS OF: BRUISES

9. TYPES OF BLEEDS: Bruising

10. TYPES OF BLEEDS: SOFT TISSUE

11. SIGNS & SYMPTOMS OF: Muscle bleed
Warm to the touch
Pain
Swelling
Tenderness
Limited range of motion
Guarding

12. TYPES OF BLEEDS: Muscle

13. TYPES OF BLEEDS: MOUTH

14. TYPES OF BLEEDS: Mouth

15. CLINICAL PRACTICE: EDUCATION
Complications:
Physical (vascular; neurological)
Hepatitis (A, B, C, )
HIV
Inhibitor
Thromboembolism
Allergic reactions

16. CLINICAL PRACTICE: HISTORY
Bleeding: Signs & Symptoms, Management
Pain level, Management
Bleed Management
Psycho-social issues
Barriers to Care

17. Comprehensive Clinic Nursing Evaluation
History was obtained from self on 9/8/16.
Since the time of his last comprehensive visit on 9/15 Anthony has been well. The interval history is 6 months.
There have been 2 ED visits for elbow bleeds.
Immunizations up to date: Yes No
There has been 2 episodes of joint bleeding, these have been in the following
joint: bilateral elbows  
soft tissue bleeding: gum bleeding  
There is acute or chronic pain. Management of the pain involves the use of marjuanna.
Is a treatment log kept?
Yes No Was it brought with you? Yes No
 The activities of daily living  
restricted (limited recreational activity,
limited school/work,
requires assistance for self care,
requires assistance for all activities). Anthony is right handed.
 The following assistive devices are used: cane, crutches, ACE wraps or splints, wheel chair, brace.
 Days absent from school: n/a and from work 0.  
Medical alert device used: bracelet, pendent, anklet, wallet card, other.---ordering this in clinic today.

18. Comprehensive Clinic Nursing Evaluation
 Current factor replacement therapies used include:(regimen: primary prophylaxis, secondary prophyalxis, on-demand, enhanced on demand, immune tolerance)
Benefix 13,450 IU once weekly as prophy Last Dose: 2 days ago
 Product choice reviewed yes and patient assistance programs available to the patient reviewed yes.
Home therapy Yes. No. Self -infusion If no, who infuses factor? Mother The home care company Diplomat.
Venous access: PIV, PAC, CVAD, AVF
Problems or concerns raised regarding venous access: Yes. No
Additional teaching or support requested? Yes. No
Are infusion records maintained? Yes. No If yes, in what form? n/a
Nursing estimate of adherence with prescribed treatment? 100% (0-100%)

19. CLINICAL PRACTICE: SKILLS
Venous Access
Peripheral
Central venous line: Port-a-cath, Hickman, Broviac
Access
Heparin
Blood draws
Dressing care

20. CLINICAL SKILLS: FACTOR INFUSION: SUPPLIES NEEDED
Central Line
Factor
Hueber Needle
Alcohol Pad
Gauze
Bandaid
Saline Flush
Heparin Flush

21. CLNICAL SKILLS: FACTOR INFUSION: SUPPLIES NEEDED
Peripheral
Factor
Needle
Butterfly
Angiocath
Tourniquet
Alcohol Pad
Gauze
Bandaid
Saline Flush

22. CLNICAL SKILLS: ADMINISTER VACCINATIONS
Administration of vaccines
Hepatitis A
Hepatitis B

23. CLINICAL PRACTICE: COMMUNICATION
Documents patient assessment, plan, and interventions
Patient advocate
Resource for multidisciplinary providers
Arrange homecare

24. Contact Information
John Urgo RN BSN Rush University Medical Center Direct Line Fax Line