**2. Health-related quality of life in the context of education**

#### **2.1 Theoretical approach – Definition**

Health-related quality of life is a multidimensional construct that has so far managed to escape a clear definition, which explains why the term is extended, always depending on the definition criteria (Daig & Lehmann, 2007). Another difficulty is finding plausible criteria for a distinct, empirical validation. In principle, this context leads to the question to what extent criteria can be used for explaining the term, with the help of which it is possible to reflect and describe the general state of health regardless of existing diseases, or, on the other hand, whether it would not be preferable to rather base the explanation of the term on diseasespecific criteria. With the latter, health would be defined as the degree of disease that allows an individual to perform actions that the individual wants to perform.

Despite the problems described it seems possible to close in to the construct from different perspectives. For example, the WHO sees quality of life as "an individual's perception of his/her position in life in the context of the culture and value systems in which he/she lives, and in relation to his/her goals, expectations, standards and concerns. It is a broad-ranging concept, incorporating in a complex way the person's physical health, mental state, level of independence, social relationships, and their relationship to salient features of their environment" (WHOQOL-Group, 1994, p. 43). The term also includes personal targets, expectations, criteria, and concerns. People are, however, faced with a number of influencing factors: For example, physical health, mental state, social relationships, as well as personal beliefs influence an individual's quality of life (Radoschewski, 2000). The term quality of life is, at the same time, closely connected with happiness, content, and wellbeing, often even used as synonyms (Daig & Lehmann, 2007).

Health-related quality of life is viewed in the context of the state of health and ability to act of people who suffer from disease or are chronically ill (Bullinger et al., 2000). According to Schumacher et al. (2003), primarily four dimensions play a determining role:


254 Neuromuscular Disorders

being gathered in almost all international health surveys. Many of the social differences not only map different living conditions, but also result in tangible advantages and disadvantages among the individual members of society (Richter, 2005). Especially during the past two decades, a vast number of publications have shown that a low socio-economic status (defined as a low degree of educational achievement, low-level job, and/or low income) is accompanied by an increased degree of mortality and morbidity (Mielck, 2000).

Why the mortality of someone who has a low income or a low degree of educational achievement, respectively, but who does not have to starve or freeze is higher than the mortality of someone with a higher income or educational level does not seem to be obvious when only seen at a glance. Education, occupational status, and income continue to influence the state of health only indirectly and are transferred with factors associated with social status. The large number of health-relevant living conditions and behaviors makes a complete explanation of status-specific differences in morbidity and mortality almost impossible (Mielck & Helmert, 2006). To date, the focus of scientific discourse has been on the unsolved causal chain of the socio-economic status affecting the state of health and the state of health in turn influencing the socio-economic status (Mielck & Helmert, 2006). The question of the extent to which both may be confounded by a third variable complicates the

Findings on educational differences in respect of disease frequency and health-related behavior are reported in particular by the Robert Koch Institute (2006) within the framework of a telephone survey on health. Heart attacks, angina pectoris, arthrosis, chronic back pain, and dizziness in men are related to a low educational level. In women, the educational level is related to hypertension, diabetes mellitus type 2, and chronic bronchitis (Lambert & Ziese, 2005). Furthermore, educational differences also become evident in health-related behavior (smoking prevalence, physical activity, etc.), the distribution of overweight and obesity, as well as the usage of information sources referring to health-related topics. It needs to be noted that in this context, the term "education" is often used unidimensionally and current

Health-related quality of life is a multidimensional construct that has so far managed to escape a clear definition, which explains why the term is extended, always depending on the definition criteria (Daig & Lehmann, 2007). Another difficulty is finding plausible criteria for a distinct, empirical validation. In principle, this context leads to the question to what extent criteria can be used for explaining the term, with the help of which it is possible to reflect and describe the general state of health regardless of existing diseases, or, on the other hand, whether it would not be preferable to rather base the explanation of the term on diseasespecific criteria. With the latter, health would be defined as the degree of disease that allows

Despite the problems described it seems possible to close in to the construct from different perspectives. For example, the WHO sees quality of life as "an individual's perception of

This applies to children, adolescents, adults, men, and women alike.

definitions from the area of educational science are neglected.

**2.1 Theoretical approach – Definition** 

**2. Health-related quality of life in the context of education** 

an individual to perform actions that the individual wants to perform.

causal approach even more.


Health-related quality of life is a result of many individual, complex evaluation and assessment processes that, in turn, all need to be analyzed based on many dimensions, as well (Daig & Lehmann, 2007). They include, for example, emotional well-being, together with a feeling of security, a stable and predictable environment, positive feedback by others, as well as interpersonal relationships, which means that one feels accepted in a community and works regularly. Moreover, personal development in terms of education, targeted activities, and physical well-being defined by health care, mobility, a sense of wellness, and a healthy diet, play an essential role. Not to be neglected in this context are selfdetermination, social integration, the right of privacy, and property.

#### **2.2 Quality of life within the framework of neuromuscular diseases**

Quality of life comprises the emotional, social, mental, and functional areas of human life (Bullinger & Pöppel, 1988). It cannot be observed from the outside but can only be indirectly derived from various aspects. These aspects mainly include a person's physical well-being, functional capabilities and performance in various areas of life, the number and quality of relationships with other human beings, and physical shape. Especially with long-time chronic diseases, individual quality of life is very important for the patients. Considering all this is essential for the patients' dignity during medical treatment, which particularly applies to long-term treatment and care. Since an evaluation of quality of life is unreliable and variable due to disease, treatment, and impairments it is probably best assessed by patients themselves (Helmchen, 1990). In practice, quality of life is rather still determined by doctors' diagnoses and not by the patients themselves. A number of studies show, however, that there can be significant differences between these two evaluations. When recording quality of life, the postulate of the subject reference of the measurement of quality of life should be taken into account, and indicators of personal and social resources should be integrated in the measurement (Siegrist, 1990).

Neuromuscular Diseases in the Context of Psychology and Educational Science 257

most frequent disease patterns were muscular dystrophy (22.9 %), muscular atrophy (9.3 %), and ALS (6.2 %). The control group consisted of 82 persons who did not suffer from either neuromuscular or other chronic diseases. This group comprised 37 men and 45 women with an average of 38.67 years (SD = 11.05). The distribution between the sexes did not show any significant differences (χ2 = 0.79; df = 1; Cramérs V = 0.07). The persons with neuromuscular diseases exhibited a significantly higher age than the control group (F = 37.84; df = 1; p < 0.05; η = 0.42). In terms of education, the test persons were divided into the categories "without advanced technical college entrance qualification" and "with advanced technical college entrance qualification and university entrance qualification". A significant difference became evident insofar as the persons of the control group had a higher educational level (χ<sup>2</sup>

The general overall quality of life was surveyed using the EUROHIS-QOL 8 Item Index questionnaire (Brähler et al., 2007). Within the scope of this survey tool, the psychological, physical, social, and environmental dimensions of the quality of life are recorded based on two items each see Table 1. The index value is calculated by adding the 8-item scale values. The higher the value, the better the quality of life was estimated (Brähler et al., 2007). The individual items are to be answered using a five-step format ("Does not apply at all" to

**Item Subscale Factor**  How would you rate your quality of life? Psychological Endogenous How satisfied are you with your health? Psychological Endogenous Do you have enough energy for everyday life? Physiological Endogenous

How satisfied are you with yourself? Social Endogenous

Have you enough money to meet your needs? Environment Exogenous

In addition to the general descriptive methods, such as averages and standard deviations, the inferential statistics check was performed in dependence of the scale level with the corresponding tests for difference checks. The prognostic potential was done via η or η2, respectively. For internal consistency revision of the items, Cronbach's α was calculated. The

The overall index (sum of four subscales) as a value for general overall quality of life showed a major difference (F = 36.80; df = 1; p < 0.05; η2 = 0.18) between the experimental group (26.95 ± 6.02) and the control group (31.68 ± 4.25) in the linear model based on the factors Group (neuromuscular disease vs. no neuromuscular and chronic disease) and

Physiological Endogenous

Social Endogenous

Environment Exogenous

= 14.81; df = 3; p = 0.05; Cramérs V = 0.29).

How satisfied are you with your ability to perform

How satisfied are you with the conditions of your

Table 1. Items of the EUROHIS-QOL 8 Item Index

significance level was set to p < 0.05.

**2.3.2 Results and discussion** 

How satisfied are you with your personal

"Applies completely").

your daily activities?

relationships?

living place?

With neuromuscular disease, functional loss caused by pain or immobility are often so serious that individual quality of life strongly depends on the way the patients cope with and handle their state. To maintain and enforce required lifestyle changes, such as participating in specific movement programs (Koch & Burgunder, 2002), self-regulating mechanisms and support from the social environment (e.g., family, friends, other ill persons, etc.) are decisive factors. In the course of neuromuscular diseases, personal and social resources play a special role in the development and impact of the disease (Koch & Burgunder, 2002).

Interestingly, studies show that compared to a healthy group of persons, patients with chronic, impairing, and progressive diseases express comparable or even better assessments of their subjective quality of life. This phenomenon is usually called the "well-being paradox" or "satisfaction paradox", or adaptation. It means that difficult living conditions do not necessarily have to result in poorer assessments of subjective well-being or quality of life (Daig & Lehmann, 2007). Robbins et al. (2001) showed that the assessment of the quality of life of patients with ALS does not primarily depend on the physical state of health. In a study by Lulé et al. (2008), the average subjective quality of life of ALS patients was 66-72 % and thus in an area that is comparable with healthy control persons. Similar results regarding the fact that many chronically ill people feel "quite well actually" are reported by Raspe (1990). He is of the opinion that ill people obviously differentiate between perception and description of complaints and an evaluation of their overall situation. Even if somatic manifestations of disease and complaints have already led to disorders in the mental and social balance, it is apparent that the afflicted persons do not inevitably connect each disorder with dissatisfaction and negative evaluations. Being ill usually affects the performance and reliability of the body. Physical ability is therefore an important, but not an exclusive component of quality of life. Quality of life indicators are criterion variables that can change in the short and medium term depending on disease characteristics and therapy (Siegrist, 1990). For instance, Diehl et al. (1990) were able to show during their examinations involving tumor patients that the disease brought to light variation and maturing opportunities that had so far been unknown to the persons. They discovered new meanings and values, particularly regarding their relationships with other persons, expectations of life, and their newly obtained ability to set priorities and distinguish between the important and unimportant. This all means that the risk of a possibly drastically reduced lifetime seems to shift life-related preferences.

It has long been known that the educational background of a person corresponds to the subjective assessment of health and disease aspects (Boltanski, 1976). In patients with ALS, Lulé et al. (2008) discovered confounding variables in terms of education and depressive symptomatology: the higher the degree of education, the lower the depression value. Based on these findings, the first study was to elicit the extent to which persons with various neuromuscular diseases differ from healthy persons in their assessment of overall quality of life, and to what extent education is influencing this aspect.

#### **2.3 Study 1 – Quality of life and education in the context of neuromuscular diseases**

#### **2.3.1 Methodology**

For this study, data of 178 persons was collected. The experimental group comprised 96 persons, 37 men and 59 women with an average age of 50.02 years (SD = 13.22 years). The

With neuromuscular disease, functional loss caused by pain or immobility are often so serious that individual quality of life strongly depends on the way the patients cope with and handle their state. To maintain and enforce required lifestyle changes, such as participating in specific movement programs (Koch & Burgunder, 2002), self-regulating mechanisms and support from the social environment (e.g., family, friends, other ill persons, etc.) are decisive factors. In the course of neuromuscular diseases, personal and social resources play a special role in the

Interestingly, studies show that compared to a healthy group of persons, patients with chronic, impairing, and progressive diseases express comparable or even better assessments of their subjective quality of life. This phenomenon is usually called the "well-being paradox" or "satisfaction paradox", or adaptation. It means that difficult living conditions do not necessarily have to result in poorer assessments of subjective well-being or quality of life (Daig & Lehmann, 2007). Robbins et al. (2001) showed that the assessment of the quality of life of patients with ALS does not primarily depend on the physical state of health. In a study by Lulé et al. (2008), the average subjective quality of life of ALS patients was 66-72 % and thus in an area that is comparable with healthy control persons. Similar results regarding the fact that many chronically ill people feel "quite well actually" are reported by Raspe (1990). He is of the opinion that ill people obviously differentiate between perception and description of complaints and an evaluation of their overall situation. Even if somatic manifestations of disease and complaints have already led to disorders in the mental and social balance, it is apparent that the afflicted persons do not inevitably connect each disorder with dissatisfaction and negative evaluations. Being ill usually affects the performance and reliability of the body. Physical ability is therefore an important, but not an exclusive component of quality of life. Quality of life indicators are criterion variables that can change in the short and medium term depending on disease characteristics and therapy (Siegrist, 1990). For instance, Diehl et al. (1990) were able to show during their examinations involving tumor patients that the disease brought to light variation and maturing opportunities that had so far been unknown to the persons. They discovered new meanings and values, particularly regarding their relationships with other persons, expectations of life, and their newly obtained ability to set priorities and distinguish between the important and unimportant. This all means that the risk of a possibly drastically reduced lifetime

It has long been known that the educational background of a person corresponds to the subjective assessment of health and disease aspects (Boltanski, 1976). In patients with ALS, Lulé et al. (2008) discovered confounding variables in terms of education and depressive symptomatology: the higher the degree of education, the lower the depression value. Based on these findings, the first study was to elicit the extent to which persons with various neuromuscular diseases differ from healthy persons in their assessment of overall quality of

**2.3 Study 1 – Quality of life and education in the context of neuromuscular diseases** 

For this study, data of 178 persons was collected. The experimental group comprised 96 persons, 37 men and 59 women with an average age of 50.02 years (SD = 13.22 years). The

development and impact of the disease (Koch & Burgunder, 2002).

seems to shift life-related preferences.

**2.3.1 Methodology** 

life, and to what extent education is influencing this aspect.

most frequent disease patterns were muscular dystrophy (22.9 %), muscular atrophy (9.3 %), and ALS (6.2 %). The control group consisted of 82 persons who did not suffer from either neuromuscular or other chronic diseases. This group comprised 37 men and 45 women with an average of 38.67 years (SD = 11.05). The distribution between the sexes did not show any significant differences (χ2 = 0.79; df = 1; Cramérs V = 0.07). The persons with neuromuscular diseases exhibited a significantly higher age than the control group (F = 37.84; df = 1; p < 0.05; η = 0.42). In terms of education, the test persons were divided into the categories "without advanced technical college entrance qualification" and "with advanced technical college entrance qualification and university entrance qualification". A significant difference became evident insofar as the persons of the control group had a higher educational level (χ<sup>2</sup> = 14.81; df = 3; p = 0.05; Cramérs V = 0.29).

The general overall quality of life was surveyed using the EUROHIS-QOL 8 Item Index questionnaire (Brähler et al., 2007). Within the scope of this survey tool, the psychological, physical, social, and environmental dimensions of the quality of life are recorded based on two items each see Table 1. The index value is calculated by adding the 8-item scale values. The higher the value, the better the quality of life was estimated (Brähler et al., 2007). The individual items are to be answered using a five-step format ("Does not apply at all" to "Applies completely").


Table 1. Items of the EUROHIS-QOL 8 Item Index

In addition to the general descriptive methods, such as averages and standard deviations, the inferential statistics check was performed in dependence of the scale level with the corresponding tests for difference checks. The prognostic potential was done via η or η2, respectively. For internal consistency revision of the items, Cronbach's α was calculated. The significance level was set to p < 0.05.

#### **2.3.2 Results and discussion**

The overall index (sum of four subscales) as a value for general overall quality of life showed a major difference (F = 36.80; df = 1; p < 0.05; η2 = 0.18) between the experimental group (26.95 ± 6.02) and the control group (31.68 ± 4.25) in the linear model based on the factors Group (neuromuscular disease vs. no neuromuscular and chronic disease) and

Neuromuscular Diseases in the Context of Psychology and Educational Science 259

their development, and on the experiences made concerning self-determination and heteronomy in the areas of physical and health-related processes (retrospective behavioral plasticity). Accordingly, control beliefs in this area are understood as the generalized results of previous learning experience (Lohaus & Schmitt, 1989), which are accompanied by divergences if previous knowledge and experiences exist for different forms of disease,

If persons believe that their actions can lead to or influence specific events they have what is called an internal control belief. If persons think they are not able to bring about certain events through their own actions but are instead convinced that other people's actions or even luck or fate are the cause of events, these persons are said to have social-external or fatalistic-external control beliefs (Levenson, 1972, 1974). In this context, internal control beliefs are evaluated as a personality resource for mental well-being and for coping with health-related issues (Krampen, 1988). Faith in the influence of medical staff (social-internal) can stabilize the patients' well-being if they depend on medical help (Taylor, 1999). Fatalism, however, is deemed dysfunctional for psychological adaptation (Krampen, 1988). Here, aspects of independent and interdependent self-construction come to play an important role, i.e., to what extent persons experience themselves as actively planning and selfdetermined (Pieter et al., 2010), or to what extent persons define themselves via the

The scope of subjective perception of control options correlates to thinking, feeling, and acting. Often, a low control belief is directly related to depression, anxiety, and low selfesteem (Bandura, 1993, Resetka et al., 1996). Positive control beliefs, however, are accompanied by optimism. Difficult tasks are considered as individual challenges (Caraway et al., 2003; Hintze & Shapiro, 1999). Persons with a high control belief show a higher degree of stamina and recover faster from setbacks when faced with difficult and unpleasant tasks (Bandura, 1999; Jerusalem & Mittag, 1999; Määta et al., 2002). Positive control beliefs are pointed out as predictors or correlates of the ability to handle stress and mental and physical health in a large number of empirical surveys (Flammer, 1990; Kuhl, 2001; Schwarzer & Fuchs, 1996). A subjectively deemed low controllability of the disease can lead to reduced ability to act according to Biebrich and Kuhl (2004). If persons feel helplessly subjected to the disease they can hardly demonstrate intact control during the hard-to-control phases of the

A number of studies report that health-related control beliefs cannot be explained exclusively based on the condition of persons and that the connection of health-related control beliefs is moderated beyond the current condition by other variables (summarizing, see Fröhlich et al., 2007). In this context it was shown that a low educational level and/or low income are accompanied more by lower and fatalistic-external control beliefs and less reverting to own capabilities (Ross & Sastry, 1999). Since control beliefs not only depend on existing diseases and complaints, but also on health-related attitudes, perceptions, and comparisons – on the one hand concerning the individual course of the disease and on the other concerning the social reference group – educational differences can have particularly serious effects. The general question arises whether a stronger development of control beliefs is influenced by the educational level, or if the general condition or current state of health has a stronger influence on the subjective control beliefs on health and disease.

which can lead to different expectations of the diseases' controllability.

association with other persons (Hannover & Kühnen, 2002).

disease's development.

Education (without advanced technical college entrance qualification vs. with advanced technical college entrance qualification or university entrance qualification), as well as the covariate Age. The interaction of Group by Education did not result in any significant differences (F = 3.16; df = 1; p = 0.08; η2 = 0.02). When analyzing the individual subscales, major effects became evident in the following dimensions:


Table 2. Significant main effects of subscales (all p < 0.05)

Moreover, the physiological subscale showed a significant interaction of Group and Education (F = 8.00; df = 1; p < 0.05; η2 = 0.05). Summing up these findings, it is safe to state that persons not suffering from neuromuscular diseases report a higher degree of satisfaction with life than ill persons (Fröhlich et al., 2009). This difference is evident both from the overall index as well as the questionnaire's subscales. Since the age of the persons surveyed can influence the result it was taken into account as a covariate. The analysis of the level of education influencing the satisfaction with life did not show any major connection between education and assessment of the quality of life. This also applies if the persons suffering from neuromuscular diseases and having a higher degree of education degree of education report on the general overall quality of life. In contrast to the findings of Robbins et al. (2001), Lulé et al. (2008), and Raspe (1990), the assessment of overall quality of life within the scope of this survey of persons having a neuromuscular disease is lower than in a comparison sample with persons not suffering from neuromuscular or other chronic diseases.
