The Austrian »Haemofit-Program« – a two Years work-out Experience of People with Hemophilia (PwH)

Experience of People with Hemophilia (PwH)

H.K. Hartl, T. Kienbacher, H. Ramschak, U. Eidher, M. Fischill and P. Frigo

Background

In early 2000 we developed a concept for a work-out program for adolescent and adult Persons with Hemophilia (PwH) at the »Arnold Schwarzenegger-Fitness Center«, a professional, public work-out studio in Graz, Styria. The model was based on the experiences of a pilot project »Haemofit« in Vienna (Fig. 1), where an excel- lent equiped out patient-center for physiotherapy and rehabilitation with experi- enced staff was chosen as location. As the interest decreased over a period of 18 months the project was stopped and, after a local group of members of the Austrian Haemophilia Society was interested to start the program, reorganized in the (smal- ler) city of Graz, but not in a medical-care-unit.

After a parallel survey in the patient organization »Österreichische Hämophilie Gesellschaft« it turned out very clear, that there is a very impressive wish to train

Fig. 1

I. Scharrer/W. Schramm (Ed.)

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Hemophilia Symposium Hamburg 2003

” Springer Medizin Verlag Heidelberg 2005

together with other PwH, 90% of the responses. Nevertheless most of the patients do not workout at all, but not because of lack of time or bleeding complications;

30% specify joint problems.

50% would like to be coached at exercising professionally and only 10% expect more joint bleedings.

Patients and Methods

The mean age of the ten patients was 36.4 years, range 22 to 63. The mean body- weight was 63.5 kg. 5 patients were diagnosed HIV-Ab positive, 7 patients suffer from severe hemophilia A, 2 from severe hemophilia B and all patients were on pro- phylactic therapy at the beginning, the therapy was again changed to treatment-on- demand, if the bleeding frequency did not increase or the patient wished to do so.

4 patients were married, 4 were single; 3 patients were students, 2 white collar worker and 2 retired.

After physical examination at the local hemophilia Center and QoL-survey (SF- 36) the PwH was allowed to workout according to a individualized training program in the fitness center (Fig. 2) according to the special needs once or twice a week for free (Fig. 3). The training program of each participant was controlled, supported and evaluated by physiotherapists and a hemophilia specialist for a period of at least one year. One trainer and one dedicated, work-out experienced PwH accom- panied the PwH during the whole period. The QoL-survey as well as the physical examination was repeated in 6–12 months intervals, to document the mobility ran- ges of the afflicted joints.

The Austrian »Haemofit-Program« – a two Years work-out Experience of PwH 239

Fig. 2

Results

Due to the small number of the evaluated group of ten PwH we concentrated only at range of motion, muscle strength, self perceived quality of life and clotting-factor consumption.

Only muscle strength was significantly improved (Fig. 4); motility was improved over the period (Fig. 5), quality of life increased and clotting factor consumption as

Fig. 3

44 49.3

54.6 57.7

0 10 20 30 40 50 60 70

2000 2001 2002 2003

p = 0.002

Degree of muscle strength according to Janda

Fig. 4

well as bleeding episodes decreased, even after switch from prophylactic to treat- ment-on-demand.

Discussion

These preliminary results encouraged us to enlarge the program and to offer it for free to all PwH in Austria, in a fitness center of personal choice, but with strict bian- nual physical examinations after composition of an individual training program and regular controls by a project officer.

Today there are some 30 PwH in the program and the first evaluation of all par- ticipants is scheduled after the first year of training.

The Austrian »Haemofit-Program« – a two Years work-out Experience of PwH 241

0

20

47.5 49.2

0 10 20 30 40 50 60

2000 2001 2002 2003

Motility

Fig. 5