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Quality
of
life
and
symptom
assessment
in
CoRPS
long-term blood cancer survivors (chapter 5)
Center of Research
on Psychology
in Somatic diseases
Floortje Mols
Tilburg University &
Comprehensive Cancer
Center South
The Netherlands
Nice
25-02
2011
CoRPS
Content of Chapter 5
• Specifically written for blood cancer survivors.
• The major forms of blood cancer are: lymphoma, leukemia
and multiple myeloma.
• Definition of survivorship: A person diagnosed with cancer
is defined a survivor from the moment of diagnosis
through the balance of his or her life (US National Coalition for
Cancer Survivorship. http://www.canceradvocacy.org).
CoRPS
Overview of literature I
•Hodgkin lymphoma survivors:
–A systematic review showed that they face problems
that can affect their quality of life.
–They reported problems in role physical and cognitive
functioning, general health and financial problems.
–Hodgkin lymphoma survivors treated with a
combination of therapies, with older age and female sex
reported worse quality of life.
Oerlemans S et al., Submitted. 2011.
CoRPS
Overview of literature II
• Non-Hodgkin lymphoma survivors:
– A systematic review showed that they had problems
with physical functioning, appetite loss, and financial
problems.
– Having had chemotherapy was negatively associated
with quality of life but no differences in chemotherapy
regimens were found.
– In non-Hodgkin lymphoma survivors not meeting
public exercise guidelines quality of life is low, but can
be improved with more exercise.
Oerlemans S et al., Submitted. 2011.
CoRPS
Overview of literature III
• Multiple myeloma survivors:
– A systematic review concluded that there are still few
RCTs in MM including quality of life as a study endpoint.
– 13 of 15 included trials stated that quality of life results
should influence clinical decision making. However,
these studies had only a limited impact on published
treatment guidelines.
Kvam AK et al., Eur J Haematol. 2009
CoRPS
Overview of literature IV
• Leukemia survivors:
– A review showed that acute myeloid leukemia and its
treatment have a substantial negative impact on a
patient’s quality of life in both short and long-term
survivors.
– Long-term survivors appear to recover almost
completely with respect to physical, psychological and
emotional well being, but incur continued sexual
dysfunction.
– Among chronic lymphatic leukemia survivors , the
older the age of the patient, the poorer the QOL.
Redaelli A et al., Cancer Treat Rev. 2004; Stephens JM et al., Am J Ther. 2005
CoRPS
PRO instruments for blood cancer
patients
• Generic PRO instruments
• Disease specific PRO instruments
– Cancer specific PRO instruments
– Blood cancer specific PRO instruments
– Treatment specific PRO instruments
CoRPS
Generic PRO instruments I
• Sickness Impact Profile (SIP) :
– Assesses the impact of disease on a patient’s life.
• Nottingham health profile (NHP):
– Intended for primary health care to provide a brief
indication of a patient's perceived emotional, social
and physical health problems.
• Short form 36 (SF-36):
– To measure generic health concepts relevant across
different age, disease, and treatment groups.
CoRPS
Generic PRO instruments II
• With these instruments it is possible to:
– describe PRO in blood cancer patients.
– compare PRO of blood cancer patients to the general
population in order to see the effect of diagnosis and
treatment on patients lives.
• These instruments may NOT:
– possess the necessary sensitivity to issues that are
important to blood cancer patients.
– give a comprehensive overview of a patients PRO.
CoRPS
Disease specific PRO instruments
• When selecting a disease specific PRO instrument, a
distinction should be made to PRO instruments that:
– can be used in all cancer patient populations.
– address issues specific to a certain cancer population
(e.g. chronic lymphatic leukaemia).
– address issues that concur with certain treatments
(e.g. chemotherapy-induced neuropathy).
CoRPS
Cancer specific PRO instruments
• Examples of well-known cancer specific instruments are:
– European Organisation for Research on Treatment of Cancer
Quality of life Questionnaire (EORTC-QLQ-C30)
– Functional Assessment Cancer Therapy - General (FACT-G)
– CAncer Rehabilitation Evaluation System short form (CARES-SF)
– Rotterdam Symptom Checklist (RSCL)
– Functional Assessment of Chronic Illness Therapy measurement
System (FACIT)
– Functional Living Index: cancer (FLIC)
– Impact of Cancer questionnaire (IOC)
– Quality of Life – Cancer Survivors’ questionnaire (QOL-CS)
CoRPS
Disease specific PRO instruments I
• Examples of disease specific instruments for blood cancer
are:
– EORTC Module for Chronic Lymphocytic Leukemia
(EORTC QLQ-CLL16)
– EORTC Myeloma module (EORTC QLQ-MY20)
– MRC/EORTC Leukaemia Module (QLQ-LEU)
– Function Assessment of Chronic Illness Therapy–
Lymphoma (FACT-LYM)
CoRPS
Disease specific PRO instruments II
• Disease specific instruments for blood cancer NOT
included in this guideline are:
– Hodgkin: currently unavailable (but in development)
– Non-Hodgkin: 52-page questionnaire based on
previously validated items and scales and new items.
Not validated.
– Chronic myeloid leukemia: under development by the
EORTC (phase I-II). Not validated.
– Leukemia: FACT-Leu, a 27-item instrument designed
for leukemia patients. Not validated.
CoRPS
Treatment specific PRO instruments
• Treatment specific instruments that are available for use
in blood cancer patients are:
– Functional Assessment of Cancer Therapy-Bone
Marrow Transplant (FACT-BMT).
– Functional Assessment of Cancer Therapy/Gynecologic
Oncology Group-Neurotoxicity instrument (Fact/GOGNtx).
– Chemotherapy-induced peripheral neuropathy
module (EORTC QLQ-CIPN20).
CoRPS
Conclusion
• Paucity of studies on PROs in survivors of blood cancer in
contrast to the amount of studies available for survivors
with other (solid) tumors. Need for more research!!
• A number of instruments on PROs are available for use
– in both the general population AND in cancer survivors
– in specific subsamples of patients (e.g. according to the
exact diagnosis and treatment)
• This chapter should enable clinicians and researchers to
select the most suitable instruments for use.
CoRPS
Questions?