12th Congress of the European Hematology ... - Haematologica

12 th Congress of the European Hematology Association
0771
ASSESSMENT OF HEALTH-RELATED QUALITY OF LIFE AND PHYSICAL PERFORMANCE IN
ADULT PATIENTS WITH HAEMOPHILIA ATTENDING A SPORTS THERAPY PROGRAMME
(HEP)
S. von Mackensen, 1 D. Czepa, 2 M.H. Herbsleb, 2 R.Z. Ziezio, 2
T.H. Hilberg2 1Institute of Medical Psychology, HAMBURG; 2Department of Sports Medicine,
JENA, Germany
Background. Sport activities are considered beneficial for patients with
haemophilia in terms of physical aspects, such as possible protection of
joints and prevention of bleeds and deformity, and non-physical aspects,
such as quality of life, socialisation and self-esteem. Patients’ report of
their own experience of well-being and functioning becomes more and
more important; therefore subjective evaluation should be combined
with objective measurements. In the frame of the Haemophilia & Exercise
Project (HEP) health-related quality of life (HRQoL) and subjective
physical performance were evaluated together with objective measures
such as orthopaedic joint score and EMG in haemophilia patients Germany.
Aims. Assessment of HRQoL and subjective physical performance
in adult patients with haemophilia attending the HEP sport camp.
Methods. HEP is a sport camp, where adult haemophilia patients are
trained twice a year. Participants were tested both objectively and subjectively
concerning their physical performance, evaluated with the newly
developed performance-specific HEP-Test-Q consisting of 25 items
pertaining to 4 dimensions (mobility, strength & coordination,
endurance, body perception), as well as regarding their HRQoL assessed
with the generic SF-36 and the haemophilia-specific Haem-A-QoL questionnaire
consisting of 46 items pertaining to 10 dimensions. Results. In
total 33 haemophilia patients were enrolled in the HEP with a median
age of 45 years (19-65). Almost all patients had haemophilia A (90.9%)
and were severely affected by haemophilia (87.9%), 9.1% had
inhibitors, 65.6% had chronic hepatitis C and 12.1% had HIV infection.
Patients reported in average 6 bleeds in the previous 12 months (0-24)
and 42.4% had target joints; 45.5% of all patients were on prophylaxis.
HRQoL of these patients was significantly impaired in physical
dimensions of the SF-36, as well as for emotional role functioning compared
to the general population. In the haemophilia-specific Haem-A-QoL
impairments were mainly found in the dimensions sport & leisure, future
and physical health, 57.6% of patients reported that they couldn’t do as
much sports as others, 51.5% suffered often/always from pain in joints. In the
performance-specific HEP-Test-Q patients showed good values for mobility,
but high impairments in coordination and endurance; 63.7% reported
often/always problems in walking down stairs, 63.6% could never/seldom do
exhausting activities. With the HEP-Test-Q 52% of the variance of the
physical component of SF-36 could be explained, 34% of the mental
component and 64% of the total score of Haem-A-QoL. Conclusions.
Since most impairments in HRQoL were found in physical domains,
especially in the dimension sport & leisure the additional assessment of
subjective physical performance can be helpful in understanding specific
problems of haemophilia patients, which can be measured by the
newly developed HEP-Test-Q. It makes sense to combine objective
assessments of physical performance with such subjective instruments
in order to reveal aspects, which can not be measured yet objectively
such as body perception. Since up to 64% of the variance of HRQoL
could be explained by subjective physical performance it is important
that haemophilia patients attend a supervised sport training which might
improve physical status and body perception and consequently has a
positive impact on quality of life.
288 | haematologica/the hematology journal | 2007; 92(s1)
0772
THE ROLE OF SERUM CYTOKINES ON THE DEVELOPMENT OF FATIGUE DURING
ALLOGENEIC STEM CELL TRANSPLANTATION
X. Wang, Q. Shi, L. Williams, S. Giralt, C. Cleeland
UT MD Anderson Cancer Center, HOUSTON, USA
Purpose of the study. To prospectively study the role of serum proinflammatory
cytokines in the development of multiple symptoms in
patients during the acute phase of allogeneic hematopoietic stem cell
transplantation (allo-HSCT). Methods. Thirty patients with acute myelogenous
leukemia or myelodysplastic syndrome reported symptoms
using the M. D. Anderson Symptom Inventory approximately weekly
during the first 100 days of allo- HSCT. Serum was collected at multiple
time points during the study and assayed for a panel of inflammatory
cytokines (interleukin (IL)-1b, IL-6, IL-8, IL-10, IL-12p40p70), IL-1
receptor antagonist (IL-1RA), and soluble receptor 1 of tumor necrosis
factor (sTNFRI). Random effects modeling was used to analyze the longitudinal
measures. Results. Over the first 100 days following allo-HSCT,
the most severe patient-reported symptom was fatigue, followed by
poor appetite, pain, drowsiness, dry mouth, and disturbed sleep. Fatigue
increased rapi y and reached their highest severity levels at Day +11 of
HSCT (3 days after nadir) and remained as the most severe symptom in
100 days.
Figure 1.
Serum IL-6, IL-8, and sTNF-RI increased significantly from baseline to
nadir. Controlled for age, gender, race, disease status, infusion cell service,
conditioning regiment, and infusion dose of cd34 in the mixed effects
model, the changes serum IL-6 and sTNFRI levels from baseline to 100
days were positively associated with fatigue severity during the first
100 days of allo-HSCT (p