The Hemophilia Assistant in Germany Hemophilia Assistant of the German Hemophilia Centers

The Hemophilia Assistant in Germany

Hemophilia Assistant of the German Hemophilia Centers

Introduction

At hemophilia treatment centers, the Hemophilia Assistant plays a central role as the most important non-medical team member. The Hemophilia Assistant supports the attending physicians in their work at the hemophilia treatment center and acts as a link between the physician and the patient and his family. For the patients, the Hemophilia Assistant is something of a confidante who helps them in their every- day life in case of any problems in connection with their hemophilia. One major goal is to give the patients as much support as possible.

Required Qualifications of the Hemophilia Assistant

– Registered nurse/MTA/physician assistant or similar – Interest in the tasks of a Hemophilia Assistant

– Commitment to the well-being of the hemophilia patients – Flexibility

– Team player

– Willingness for further education

Role and Tasks of the Hemophilia Assistant

The main role includes the follow-up discussion of the issues addresses in the first doctor-patient meeting and practical training of the patient and/or his family in physician-controlled self-treatment.

The following tasks may vary depending on the responsible physician and the availability of other team members at the hemophilia treatment center.

A. Data collection and collaboration in keeping the patient records B. Participation or cooperation in studies and research projects C. Interest in own further education

D. Cooperation in the certification of the hemophilia treatment center E. Patient education on general hemophilia issues:

1. Basic information

쐌 Description of hemophilia as a chronic hereditary disease – illustration of blood clotting and discussion of general aspects of hemophilia

I. Scharrer/W. Schramm (Ed.)

34

Hemophilia Symposium Hamburg 2003

” Springer Medizin Verlag Heidelberg 2005

쐌 Type of hemophilia, severity, (inhibitors)

쐌 Basics of factor substitution including the preparations available

쐌 Bleedings to be expected – so-called spontaneous bleeds, slight and severe injuries

쐌 Bleedings into joints and muscles – the most serious injuries, with the pos- sibility of permanent damage

쐌 Importance of substitution as early as possible and at an adequate degree in the event of bleeding

쐌 Possibility of side effects during or after administration of clotting factors 쐌 Management of any pain that may occur

쐌 Special aspects pertaining to hemophilia:

– Medications that must be avoided – Safety precautions for children

– Appropriate sporting activities in order to build up the muscular system as a means to prevent joint and muscle bleeds, which may result in lasting damage

– Dental care

– Control of vaccine titers (point out the importance of vaccine titers) 2. Information on bleeding sites and the possible consequences

쐌 Explanation of hemophilic arthropathies

쐌 Explanation of the different types of muscle bleeds (e.g. iliopsoas bleeds, pseudo-tumor etc.)

쐌 Signs and symptoms 쐌 Cerebral hemorrhage 쐌 Kidneys

쐌 Oropharynx

쐌 Gastrointestinal tract 쐌 Soft tissues

쐌 Other

F. Treatment related tasks 1. Focal points

쐌 Coordination and conduction of blood collection 쐌 Assistance during infusion of the factor concentrates 쐌 Explanation of the use of other medications

쐌 Explanation of measures in order to improve the quality of life 쐌 Support of the physician during treatment and documentation 쐌 Referral to other qualified team members

2. Physician-controlled home treatment

쐌 Training and further education of the patients

– Detection of bleedings and their treatment by individual dosing – Technical aspects: sterility, reconstitution, injection technique, disposal,

Storage

– Documentation of bleeding events and their treatment including batch recording

쐌 Distribution of the clotting factors and monitoring their consumption

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3. Follow-up treatments

쐌 Ensuring appropriate follow-up examinations and treatment at the center for all patients and – if required – their families

쐌 If required – arranging for treatment in local institutions

쐌 Maintenance of regular contact between patients and/or their families and the center

쐌 Encouraging patients to lead a normal life (school, professional training, leisure time, recreation, appropriate sporting activities)

쐌 Early notification of the attending physician about stress factors and any family issues in order to be able to offer appropriate support and solutions 쐌 Information about self-help groups

4. Genetics

쐌 Basics of heredity 쐌 Carrier status

쐌 Possibilities of genetic counseling G. Function as link

쐌 Physicians at the hemophilia treatment center

쐌 Other team members such as orthopedist, psychologist, dentist, physiothe- rapist, etc.

쐌 Patient/family 쐌 Society

– General practitioners/specialists – School/nursery school/employer – Local health authorities

– Regular contact and exchange with other hemophilia treatment centers – Relationship with Hemophilia Associations (e.g. German Hemophilia

Society [DHG], WFH)

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