**7. Importance of quality of life issues**

The World Health Organization (WHO) defines QoL as individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation

As illness and its treatment affect the psychological, social, and economic well-being, as well as the biological integrity of individuals, any definition should be all encompassing while allowing individual components to be delineated. This allows the impact of different disease

QoL is measured in a variety of contexts. Aside from healthcare, it is also used in international development and political science. This results in diverse definitions being given to the term. Factors that are considered are both qualitative and quantitative. Many local, national and international organizations conduct surveys and psychological tests to determine an individ‐

A major rule for physicians is the principle of "nil nocere". While making an effort to reach better and better disease control for cancer patients, we often neglect the repercussions of the patient in regards to "being ill", to the consequences of the treatment, and to the disease per se. The main purpose for all clinicians is therefore to improve the quality of the patient's life and to avoid iatrogenic harm. It is not enough to make implicit, subjective judgments about QoL when treating a patient. Making explicit, objective assessments about QoL using validated tools and instruments is needed. Formal assessment of QoL is now a mandatory requirement

WHO defines health as "A state of complete physical, mental, and social well-being not merely the absence of disease." The measurement of health and the effects of health care must include not only an indication of changes in the frequency and severity of diseases but also an estimation of well being and this can be assessed by measuring the improvement in the QoL

HRQoL can be defined as self-perceived aspects of wellbeing that are related to or affected by the presence of a disease or treatment [12]. A multidimensional HRQoL instrument was defined as any quality of life instrument assessing two or more of the three core domains described by the World Health Association: physical, social, and psychological wellbeing [13]. As a multidimensional construct, it includes perceptions, both positive and negative, of several dimensions such as physical, emotional, social and cognitive functioning. It also includes the negative aspects of somatization disorder and symptoms caused by a disease and/or its treatment [14]. Studies undertaken in different settings or in different countries might display

Over the past 20 years there has been a growing interest in the inclusion of HRQoL measures to assess the effects of a condition and/or its therapies on a person's health. In response to this interest, methods to assess health status and HRQoL have proliferated. There are now a

slight divergences as HRQoL is also modulated by cultural and care patterns.

states or interventions on overall or specific aspects of QoL to be determined.

to their goals, expectations, standards, and concerns [11].

278 Multiple Myeloma - A Quick Reflection on the Fast Progress

ual or society's life quality for different purposes.

**6. Health-Related Quality of Life (HRQoL)**

in most clinical trials.

related to health care [11].

In the case of MM, disease severity and type of treatment (high-dose chemotherapy and ASCT, the use of novel agents such as bortezomib, thalidomide or lenalidomide) have a clear influence on the patient's subjective perception of the disease. Their effects on HRQoL are also modu‐ lated by personality traits, personal resources and the availability and perception of social and family support.

Clinical applications of HRQoL tools may include prognostication, monitoring response to treatment, prioritizing problems or facilitating communication. The use of HRQoL instruments in clinical practice has also been shown to independently improve HRQoL in general oncology patients [18]. Some authors who have demonstrated reduced HRQoL in myeloma have concluded that HRQoL assessment should become a normal part of clinical care [19, 20].

Besides the typical primary parameters of clinical trials for measuring the treatment effect, such as tumor volume and time to progression, recognition of HRQoL is also an important 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 and aid patient decisions when survival gains are small.

Side-effects of several lines of treatments include polyneuropathy, deep vein thrombosis, loss of hair and constipation. Osteonecrosis of the jaw caused by bisphosphonates, though a rare

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Recurrent infections due to the patients' immunocompromised status, the disease itself and also due to the several lines of treatment used to control the disease also contribute to the

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

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-

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].

Though HRQoL examinations are widely used especially in cancer patients and they are an integral component of clinical trials with new drugs, MM patients are relatively poorly studied in this respect. A PubMed search with terms of "multiple myeloma and quality of life or health-

These studies targeted the comparison of HRQoL of MM patients in different countries [23], treated with different therapeutic schedules, receiving new drugs [24], underwent

event, results in severe deterioration of QoL.

**9. Questionnaires for evaluating MM**

was designed to identify these. [22].

**10. HRQoL studies in MM**

related quality of life" has resulted in only 51 items.

worsening of QoL.

BMT and the QLI.

Delineation of side-effect profile by means of HRQoL assessment can assist in determining the types of supportive interventions that may be needed to ameliorate the side-effects.

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

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 economic importance.
