**9. Questionnaires for evaluating MM**

endpoint in clinical research. In circumstances when the studied treatment modality results only a modest improvement in respect to primary parameters, with little benefit for the patient but with a significant side-effect profile, it may be a helpful outcome to detect the declination of HRQoL compared to the control. Clinical trials incorporating QoL assessments can provide more information and help clarify the relative harms and benefits of palliative chemotherapy

Delineation of side-effect profile by means of HRQoL assessment can assist in determining the

QoL can also represent an independent prognostic factor. It is known that patients with a good QoL at the beginning of treatment manage better than those with a worse baseline value and there is a growing amount of evidences that QoL can be used as an effective prognostic

QoL data can be a useful predictor of patient response to treatment and can affect decisionmaking about therapeutic options. This data allows patients to make informed and individu‐ alized decisions on the most appropriate treatment and any required supportive interventions.

HRQoL may be applied by the healthcare system to allocate resources by economic reality. As demand is always larger than resources, the optimal allocation of the financial means has great

MM is a chronic, incurable disease that is associated with reduced quality of life. MM patients have to face the problems of living with a chronic illness longer as a result of prolonged survival. However, they are also faced with the difficulties related to a malignant disease. Disease symptoms, concerns with certain therapeutic modalities and also the QoL changes due to organ transplantation emerge. Generation of pathologic bone fracture, bone pain, fatigue because of anemia and malignant disease itself, neurological symptoms due to

Chronic renal failure develops in one third of MM patients. Chronic dialysis treatment

Most anti-myeloma therapies involve intravenous injections or infusions. Regular laboratory check-ups require repeated blood sample collections that require multiple encounters with needles. Taking bone marrow for diagnosis and several times afterward for control examina‐

ASCT has considerable effects on QoL. High-dose chemotherapy presents significant side effects and subsequently a reduction of QoL. This is due mainly to infections, mucositis,

hypercalcaemia have a profound impact on the QoL of MM patients.

increased use of blood products and prolonged stays in the hospital.

tions is very painful unless it is performed in narcosis.

types of supportive interventions that may be needed to ameliorate the side-effects.

and aid patient decisions when survival gains are small.

280 Multiple Myeloma - A Quick Reflection on the Fast Progress

indicator in respect to several kinds of malignancies [21].

**8. Myeloma-specific HRQoL aspects**

implicates several life style changes.

economic importance.

Osborne et al. systematically reviewed the different HRQOL instruments applied for evalu‐ ating myeloma patients in their recent study. Thirteen different HRQOL instruments were identified across 39 studies. Only one disease-specific instrument was identified (EORTC-QLQ-MY24/MY20). Other measures were general cancer tools (EORTC-QLQ-C30, FACT-An), treatment specific (EORTC-QLQ-HDC19, FACT-BMT), or generic [SF-36, SF-12, SEIQoL-DW, EQ-5D, 15D, life ingredient profile (LIP), Quality of Life Index (QLI)]. The SEIQoLDW was the only individualised instrument (with domains defined by respondents). No instrument was developed specifically for clinical use, or in palliative settings – although the search strategy was designed to identify these. [22].

No single instrument covered all issues identified as important by people with myeloma. The most comprehensive coverage was found in the EORTC-QLQ-MY24 (myeloma-specific module, used in conjunction with core cancer questionnaire EORTC-QLQ-C30), the FACT-BMT and the QLI.

However, each tool has its strengths and the choice of tool will depend on the context in which it is used. To describe the incidence of side effects in a particular group, the EORTC tools may be more appropriate. However, in clinical practice, we may want a tool to focus more on the particular concerns of each patient (such as the SEIQoL-DW). These tools are time-consuming, require specialized training, are difficult to compare between studies and different interview‐ ers and can be less feasible in certain groups such as those with chronic disease or the elderly.

Existing tools tend to be designed for use in research settings and their adaptation or the development of new tools specifically for use in clinical practice would be beneficial [22].
