poster presentation

1. Quality of Life Issues Important to Patients With
Haematological Malignancies
Salek M.S.1, Oliva E.2, Ionova T.3
1School of Life & Medical Sciences, University of Hertfordshire, Hatfield, UK
2Hematology Unit, AziendaOspedaliera, Reggio Calabria, Italy
3 St. Petersburg Multidisiplinary Center and Multinational Center for Quality of
Life Research, St. Petersburg, Russia

2. INTRODUCTION
• A number of generic and disease-specific instruments are available for
measuring patient’s HRQoL and symptoms in clinical trials of
haematological malignancies such as the FACT-G, EORTC-QLQ-
MY24/MY20, and the QOL-E MDS.
• Currently, no instrument for assessing HRQoL and symptoms in
haematological malignancies developed and validated for routine clinical
practice use is available [1, 2]. None of the existing measures (used in
clinical trials) comprehensively addresses issues important to
haematology patients [1, 3]
[1] Novik A, Salek S & Ionova T. Guidelines: Patient-reported outcomes in hematology. European
Hematology Association Scientific Working Group Quality of Life and Symptoms. 2012.
[2] Osborne TR, Ramsenthaler C, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ. What issues matter
most to people with multiple myeloma and how well are we measuring them? A systematic review of
quality of life tools. European Journal of Haematology 2012;89:437 – 57.
[3] Cella D, Jensen SE, Webster K, Du H, Lai J-S, Rosen S, Tallman MS, Yount S. Measuring Health-Related
Quality of Life in Leukemia: The Functional Assessment of Cancer Therapy – Leukemia (FACT-Leu)
Questionnaire. Value in Health 2012;15:1051-58.

3. AIM
• The aim of this study was to explore the views of
patients with haematological malignancies (HM)
concerning the quality of life issues important to them.
The identified issues will, then serve as basis for the
development of a new HRQoL instrument in HM.

4. METHODS
 Participants in this study were recruited through patient
support groups (Myeloma UK, Leukaemia CARE and MDS
Foundation) and through a haematology clinic at a referral
hospital.
 Inclusion criteria:
• Adult patients with any myeloid or lymphoid neoplasm or
acute leukaemia at any stage of disease (diagnosis, during first
line treatment, treatment failure and /or resistance, second line
and subsequent treatment),
• Ability to understand and read English,
• Ability to give written informed consent

5. METHODS
 Multicentre ethics approval was obtained from South East
Bristol Ethics Committee in March 2014.
 Semi-structured interviews (face-to-face or by phone) and
survey (online) with open- ended questions were carried
out for data collection. Interviews were tape recorded and
then transcribed verbatim.
 Data analysis applied thematic analysis and was carried
out using N-vivo 9 qualitative analysis software.

6. RESULTS
• Qualitative data was collected from 57 HM patients (14
in-person interviews; 3 telephone interviews, and 40
online-surveys).
• The mean age of the patients (male=26%) was 61.8
years [SD=9.1].
• Type of HM:
Multiple myeloma, n=46,
MDS, n=8,
NHL, n=1
AML, n-2
• The mean duration of disease was 3.7±3.1 years.

7. RESULTS
Key HRQoL themes identified from patient interviews and online surveys
3 3 3 3 3 3 3
4 4 4 4 4 4 4 4 4 4 4
5 5 5 5 5
6 6 6 6 6
7 7 7 7
8 8 8 8 8
9 9 9
11
20
Issues /Quality of Life Impacts
Number of patients
There were 21 QoL issues reported by patients with the highly prevalent items being ‘limitation in
social activities’, ‘strain on relationships’, ‘unable to do any activity’ and ‘doing things slowly’ ‘feeling
angry’, ‘avoid crowds’

8. RESULTS
Key HRQoL themes identified from patient interviews and online surveys
Limitation in
social
activities
Obviously when you have chemotherapy you can’t go out, you can’t do anything
because your immune system has gone….. You have got to be careful, because if
someone has a cold or a chill or anything they don’t come then. We don’t go to them
and they don’t come to us, and they accept that which is fine. If you go out you don’t
know what other people have got, so we have to be careful where we go. It affects you
that way, and of course it affected us going on holiday. So we haven’t been away but I
can put up with that.
72 years, Male – Acute Myeloid Leukemia (inpatient, undergoing treatment)
Affected
physical
activities;
Unable to do
any activities
I have no social life. I used to go to the pub. I don’t drink now. I don’t think I could stick
it over there because of the way I am. I can’t really do anything as I can’t really walk
anywhere now like I used to. I can’t walk far because I would be out of breath… It’s a
job to walk around the block of the house…
Well it is only that I can’t do the things that I want to do, isn’t it? Anything, gardening….
I can’t even cut the grass now. I have been banned from it because I get out of breath.
So it is an effort to cut it. I don’t walk, so it’s just pottering around now.
55 years, Male - Non-hodgkins Lymphoma (outpatient, awaiting next treatment cycle)
Fatigue …you are totally lacking in energy. You can’t do anything…you don’t eat. I had to be
tube-fed, because my mouth was full of ulcers and I couldn’t eat. Apart from the fact
that I didn’t have an appetite I couldn’t eat because my mouth was full of ulcers and was
bleeding.
66 years, female – myeloma (completed treatment)

9. RESULTS
Key symptoms reported by patients in the interviews and online surveys
The symptoms were grouped into 5 categories, namely breathlessness, fractures, spinal
problems, anaemia and black urine, from high to low prevalence respectively.
1 1 1 1 1 1 2 2 2 2 2 2 2 3 3 3 3
4 4 4 4
5
8
9
10
15 15
19
Issue/Disease symptoms
Number of patients

10. CONCLUSIONS
• The current study highlights the depth and breadth of the
impact of HM on the health status and quality of life of
patients.
• Our findings show unique symptoms and QoL issues specific to
patients with HM which have been overlooked, previously, and
have not been concisely measured.
• This emphasizes an urgent need for a versatile patient-
reported outcome measures for assessing such impacts,
particularly in monitoring patients in routine clinical practice.