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Neurological Research
A Journal of Progress in Neurosurgery, Neurology and Neurosciences
Volume 45, 2023 - Issue 4
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Research Article

Illness perception and quality of life in patients with migraine and tension-type headache

, , , , &
Pages 370-380 | Received 05 Jul 2022, Accepted 11 Nov 2022, Published online: 22 Nov 2022

ABSTRACT

Introduction

Migraine and tension-type headache (TTH) are important health problems because cause loss of workforce, affect quality of life and are frequently associated with anxiety and depression. Illness perception is defined as a cognitive aspect of illness. The aim of this study is to determinethe relationship of migraine and TTH with quality of life, illness perception, anxiety and depression.

Materials and Methods

Demographic information and headache characteristics of 160 patients (80 migraine, 80 TTH) who has applied to our hospital’s neurology outpatient clinics were recorded. Hospital anxiety depression scale, illness perception questionnaire and quality of life short form-36 (SF-36) were applied to these patients.

Results

Headache severity and duration were higher in migraine patients. Migraine sufferers believed that their illness would last longer and the results would be worse. Negative emotional representations were more common in TTH patients. Understanding of the disease was higher in younger and those with higher levels of education. Social functionality and bodily pain scores were worse than those of TTH patients. Headache severity and duration were higher in women. Anxiety and depression were associated with headache frequency, duration, and severity. It was determined that the severity, duration and frequency of headache also affected the quality of life.

Conclusion

Informing patients in detail about their diseases and increasing their education level can contribute to the improvement of headache representations. In addition, screening and treatment of anxiety and depression may be other interventions that can improve patients’ adherence to treatment and quality of life.

1. Introduction

Headache is one of the most common health problems, with more than 90% of people experiencing at least once in their lifetime [Citation1]. Tension-type headache (TTH) is the most common kind of primary headache. Its prevalence varies between 10.8% and 86.6% [Citation2]. The prevalence of migraine ranges from 2.6% to 21.7% [Citation3]. Both these types of headache are more common in women and between the ages of 30 and 50.

Primary headaches such as migraine and TTH are significant health problems because they affect workforce/school days, economic situation and quality of life. TTH is usually mild, but some patients complain of frequent or severe headaches and experience disability. Migraine, in contrast, is one of the common restrictive diseases [Citation4].

Migraine and TTH are known to be associated with anxiety and depression. The risk of major depression is three times higher in migraine patients, and the frequency of migraine in patients with depression is three times higher than in the normal population [Citation5]. Anxiety and depression are more common in patients with TTH [Citation6].

Health-related quality of life refers to whether the patient’s health status affects their abilities and capacity to function in various social and emotional roles [Citation7]. It is important to evaluate the effects on quality of life in many chronic diseases, especially such diseases as migraine and TTH [Citation8].

Illness perception is defined as the patients’ cognitive view of the disease state. To understand and cope with illness, people try to explain it based on their personal experiences, knowledge, beliefs and needs. As a result, they create their own disease models and representations [Citation9]. Patients’ perceptions of their health status may be independent of their actual physical condition [Citation10]. Two different models can be used to conceptualize the perception of illness: 1) common sense model (CSM) [Citation11], 2) explanatory model [Citation12]. CSM is the most detailed theoretical model in its attempt to explain how cognitive factors affect coping behaviours and illness outcomes [Citation11]. The illness perception questionnaire (IPQ) was developed based on CSM. Research using the IPQ has investigated the illness perception in many diseases. According to these studies, patients who believe their disease to be under control, take care of their health more actively and benefit more from medical opportunities [Citation13]. Illness perception can also predict the course of a disease and the treatment outcome. However, there are limited studies on migraine and TTH using IPQ [Citation14].

The relationship between illness perception, quality of life and depression and anxiety has been studied extensively in many diseases, but studies including migraine and TTH are limited. In this study, our aim is to evaluate the risk increase in terms depression and anxiety, quality of life and illness perceptions of patients with migraine and TTH.

2. Materials and methods

2.1. Participants

We evaluated 185 patients over the age of 18 who applied to the neurology outpatient clinic of our hospital and were diagnosed with migraine or TTH according to the International Headache Classification-2. Twenty-five participants were excluded because they did not meet the eligibility criteria. So, this study includes 160 randomly selected patients (80 migraines, 80 TTH). The demographic and headache characteristics of both groups were recorded. Additionally, hospital anxiety depression scale (HADS), IPQ and the quality-of-life short form-36 (SF-36) were given to both groups. This investigation was performed according to the Helsinki declaration, and the approval by the corresponding Ethics Committee. Written informed consent forms were obtained from all participants.

2.2. Scales

2.2.1. Hospital Anxiety Depression Scale (HADS)

This scale, developed by Zigmoid and Snaith, measures the risk and severity of anxiety and depression [Citation15]. A study was performed by Aydemir et al. in Turkey and they found the scale to be valid and reliable [Citation16]. It is not used to diagnose but to measure anxiety and depression risk quickly. The scale includes 14 questions and the answers are scored in a four-point Likert format from 0–3. The lowest score patients can score on both the anxiety subscale (HADS-A) and the depression subscale (HADS-D) is 0, and the highest score is 21. The cut-off point is 10 for anxiety and 7 for depression [Citation16].

2.2.2. Illness Perception Questionnaire (IPQ)

This questionnaire was developed by Weinmann in 1996 [Citation9] and revised by Moss-Morris et al. in 2002 [Citation17]. The Turkish adaptation was developed and a validity-reliability study performed by Kocaman et al. in 2007 [Citation18]. The IPQ consists of three dimensions: 1) disease symptoms (or type) 2) opinions about the disease and 3) causes of the disease. The disease symptoms dimension includes 14 common symptoms (pain, burning throat, nausea, difficulty breathing, weight loss, fatigue, joint stiffness, burning eyes, wheezing, headache, stomach complaints, lightheadedness, sleeping difficulty and loss of strength). For each of these symptoms, the first question asked is ‘do you have any such symptom?’ followed by ‘do you think this symptom is related to your illness?’ This dimension collects yes/no answers for both questions for each symptom. The sum of yes answers to the second question constitutes the evaluation result of the disease symptom dimension. The opinions about the disease dimension includes seven subscales. These are duration (acute, chronic), disease outcome, personal control, treatment control, understanding of illness, duration (cyclical) and emotional representations. The causes of the disease dimension consist of 18 possible causes of disease. These include risk factors such as smoking, ageing, alcohol, psychological attribution, immunity and chance. At the end of the scale, individuals are asked to write down three factors that they see as the most important causes of their illness for qualitative evaluation [Citation18].

2.2.3. Quality of Life Scale Short Form 36 (SF-36)

Eight subscales with total 36 items provide a physical and cognitive evaluation of the effect of the disease on the individual according to eight dimensions of health: physical functionality, limitation due to physical problems, limitation due to emotional problems, energy-vitality, emotional well-being, social functionality, pain and general health perception score between 0–100 is obtained for each sub-scale. High score indicates better quality of life [Citation7]. It has been adapted for Turkish society [Citation19].

2.3. Exclusion criteria

Those who were illiterate, had a history of neurological or psychiatric disease that might prevent them from participating in the study and were younger than 18 years of age were not included in the study.

3. Statistical analysis

The SPSS 20.0 package program was used to evaluate the data obtained in the study. Descriptive statistics for continuous variables were summarized as mean and standard deviation and descriptive statistics for categorical data were summarized as frequency and percentage. In the comparison of quantitative data, Student-T and One-Way ANOVA tests were used for those who met the normal distribution assumption and Mann-Whitney U test for those who did not. The Chi-Square test was used to compare categorical data and the Kruskal Wallis test was used in groups of three that didn’t show normal distributions. The results were evaluated at the 95% confidence interval, significance level of p < 0.05. Correlation between parameters was done with Pearson and Spearman correlation analysis.

4. Results

The mean age of the patients was 35.5 ± 10.8. Thirty-three patients (20.7%) were male and 127 patients (79.3%) were female. There was no significant difference between the migraine and TTH groups regarding the demographic characteristics ().

Table 1. The analysis of patient’s demographic characteristics (*: p < 0.05, SD: standart deviation).

The mean disease duration was longer in migraine patients. The mean visual analog scale (VAS) score for headache severity was higher in migraine patients. While the frequency of headache was higher in patients with TTH, the duration of headache was longer in patients with migraine. The distribution of patients’ headache characteristics within the groups are summarized in .

Table 2. The evaluation of headache characteristics (*: p < 0.05, SD: standard deviation, VAS: visual analog scale).

Of the migraine patients, 51 (63.7%) had migraine without aura, 10 (12.5%) had migraine with typical aura, 3 (3.8%) had retinal migraine, 2 (2.5%) had migraine with brainstem aura and 14 (17.5%) had chronic migraine. While 61 (76.2%) of the TTH patients were episodic TTH, 19 (23.8%) were chronic TTH.

In the analysis of demographic characteristics, headache features and illness perception scores it was determined that age was negatively correlated with understanding the disease. Education level was negatively correlated with VAS and positively correlated with understanding the disease and personal and treatment control. Detailed correlation analyse is given in .

Table 3. Correlation of demographic characteristics, headache features and illness perception scores (*: p < 0.05, VAS:Visual Analog Scale).

Illness perception questionnaire scores showed that migraine patients believes their illness would last longer and the outcomes would be worse than TTH patients. Negative emotional representations of the illness were higher in TTH patients. In the subscale of illness causes, it was observed that TTH patients believed that immunity, accident and chance were more important than the migraine group. When people were asked about the most important reasons for their illness, the most common answer was ‘stress’ and the other common answers were ‘fatigue’ and ‘genetic factors’. Detailed analysis of IPQ scores is given in .

Table 4. Analysis of IPQ scores (*: p < 0.05, SD: standard deviation).

In quality of life scale; social functionality and pain scores were lower in migraine patients. Detailed analysis of SF-36 scores between migraine and TTH groups is given in . Quality of life parameters were also analyzed in all patients. Age was negatively correlated with physical functionality. Education levels were positively correlated with physical functionality and general health perception. Headache frequency was negatively correlated with energy-vitality, emotional well-being and general health perception. All aspects of quality of life were worse in patients with high headache severity. Except for emotional well-being, all quality of life factors were worse in those with a longer duration of headache.

Table 5. Analysis of quality of life (SF-36) scores (*: p < 0.05, SD: standard deviation).

The correlation of anxiety, depression, illness perception and quality of life scores were examined. It was observed that the anxiety and depression levels were negatively affected various IPQ subscales, Anxiety and depression levels were negatively correlated with all parameters of quality of life. In patients with high belief that the disease is chronic, all parameters except social functionality were negatively affected in quality of life. The scores of belief in negative consequences of the disease negatively affected all scores of quality of life. Negative emotional representations negatively affected all parameters of quality of life (). On the other hand; it was determined that age was positively correlated with depression levels. There was no significant difference between the migraine and TTH groups in HADS-A and HADS-D scores.

Table 6. Correlation of anxiety, depression, illness perception and quality of life scores (*: p < 0.05, Hads-A: Hospital Anxiety and Depression Scale-Anxiety, Hads-D: Hospital Anxiety and Depression Scale-Depression).

It was seen that 57 (35.6%) of all participants were at risk for anxiety and 86 (53.7%) for depression. Thirty-four patients (42.5%) with migraine and 23 patients (28.7%) with TTH were at risk for anxiety. Forty-four patients (55.0%) with migraine and 42 (52.5%) patients with TTH were at risk for depression.

Scales and demographic features were analyzed in terms of genders. The mean VAS score of women was higher than men. Headache duration was longer in women than men. Among the IPQ subscales, belief that the disease has a cyclical nature and belief to psychological causes was higher in women. On the other hand, energy-vitality and emotional well-being scores, which are quality of life parameters, were lower in women.

The features of chronic migraine and episodic migraine were compared. Disease symptoms were higher in chronic migraine patients. Patients with migraine with aura had higher anxiety and depression scores than those with migraine without aura.

5. Discussion

Migraine and TTH are common diseases. They may cause loss of work force and may be accompanied by psychiatric disorders. Determining the risk of psychiatric comorbidity in patients with headache is of great importance in terms of the prognosis of headache. The most common psychiatric comorbidity accompanying headache is major depressive disorder. Although the rate of depression in migraine patients was found to be higher than in patients with TTH in some studies [Citation20], the rates of depression and anxiety in patients with migraine and TTH are often similar. However, depression and anxiety scores were found to be higher in patients with both migraine and TTH compared to the normal population [Citation21]. In our study, half of the patients were found to be at risk for depression and about one third for anxiety. There was no difference between the migraine and TTH groups in terms of anxiety and depression scores. In some studies, it was found that the possibility of TTH and migraine is high in people with depressive symptoms [Citation22]. Common genetic or environmental factors that can cause one condition to another may explain this association. Headache frequency and severity are correlated with anxiety and depression levels in patients with TTH [Citation23]. In our study, headache frequency, duration and severity were correlated with anxiety and depression levels. Considering that the two disorders play a role in the formation of each other, this may be an expected result.

Anxiety symptoms increase when uncontrollable and unpredictable events increase in the individual’s environment. In a study in China, it was observed that negative disease outcomes, including depression, decreased as patients with novel coronavirus disease-19 (COVID-19) gained more information about the disease [Citation24]. In our study, treatment control and personal control of people who understood the disease were high, while the duration and severity of headache, disease symptoms and depression-anxiety levels were low. In a study conducted with chronic obstructive pulmonary disease (COPD) patients, it was observed that they understood their disease better and had a better quality of life by using more proactive coping strategies [Citation25]. Understanding the disease and using coping strategies correctly both reduce psychiatric comorbidities and disease symptoms and improve quality of life. In another study, the illness perception in patients with eating disorders was examined, and it was observed that the self-direction was the feature best associated with the illness perception [Citation13]. This encourages self-control to make decisions and to play an active role in one’s health care. These results support the use of some interventions to identify strategies to successfully achieve treatment goal.

Stress plays a major role in the chronicity of headache. The quality of life and the illness perception are worse in those with a longer disease duration. Illness perception also affects chronicity, quality of life, adherence to treatment and psychosocial response in many diseases [Citation26]. In our study, headache frequency and disease symptoms were higher and the quality of life was worse in patients with chronic migraine. These results showed that the severity and duration of disease symptoms may affect the illness perception and other symptoms accompanying the disease. It has been shown that patients with migraine who believe that the disease will be chronic have less understanding of the disease and less control over treatment [Citation27]. Similar results were obtained in our study. It has been observed that patients who believe that their symptoms at the beginning of the disease will have serious consequences for them use higher health care in the future [Citation28]. The lack of understanding of the disease increases the negative thoughts about the disease and decreases the success of the treatment by decreasing the participation in the treatment. It is important to explain the characteristics of the disease to the patient in detail, together with psychological interventions aimed at changing the negative perceptions about the disease, in terms of affecting the clinical results. Patients with high risk of anxiety and depression have negative perception of illness. According to the self-regulation model, because cognitive and emotional processes are interrelated, patients’ negative beliefs about their illness may increase the risk of anxiety and depression. It has been suggested that cognitive and emotional mental products arising from internal or external stimuli associated with the disease may mediate the change of the individual’s representations and perception of the disease. Illness perception can affect individuals’ emotional state and quality of life. In another study, disease symptoms, belief in the chronicity of the disease, and poor disease outcomes were associated with a higher disability burden [Citation14]. This shows that the loss of work force of these people is related to the illness perception.

Young and highly educated patients have strong self-control, have a good understanding of their illness and notice more signs of illness [Citation29]. In our study, individuals with high education levels had high levels of controlling the disease and controlling the treatment. People with a high belief in self-control can more easily adapt to lifestyle changes and have better relationships with support therapists. Education can improve a person’s ability to understand health information and increase patients’ understanding of their illness.

It has been suggested that the illness perception is important in patients’ adherence to treatment. In a study of patients with primary and secondary chronic headache, it was observed that compliance with prophylactic medication was low in patients with low treatment control and low self-control beliefs [Citation14]. Similar results were obtained in a study conducted for drug compliance in a population of HIV patients, and it was observed that family and friend support was not associated with drug compliance [Citation30]. Illness perception affects adherence to treatment, and as a result, many outcomes such as the consequences of the disease, its chronicity and treatment control are also affected. It is unclear whether it is possible to treat the illness perception in itself. A recent study found that patients’ cognitive training in low back pain initiates an improvement in their illness perception. However, the CSM suggests that perceptions of illness are constantly changing due to new information and personal experiences, which may suggest that these factors may be variable [Citation14]. Studies are needed on the effect of cognitive and behavioral therapies on treatment compliance in migraine and TTH patients.In a study of patients with osteoarthritis, poor disease perception was predictive of higher disability in later years. With this result, it can be concluded that perceptions of illness may be a precursor to disability [Citation31]. Long-term follow-up of the patients may give an idea whether the perception of the disease can be a predictor of some clinical symptoms. This could mean that interventions aimed at changing perceptions of illness may contribute to better functional outcomes.

In a study conducted with patients with migraine, it was observed that female gender was associated with poor outcomes in many illness perception and quality of life parameters [Citation32]. In our study, energy-vitality and emotional well-being scores, which are quality of life parameters, were lower in women. In addition, headache severity and duration were higher in women. As a result, the disability effect of migraine on women is higher than men. These results may be related to sex hormones, genetic factors and social expectations that have a greater impact on women’s lives.

It has been reported that increased beliefs about the negative consequences of the disease in patients with muscle disease and multiple sclerosis contribute significantly to many factors of quality of life and are associated with psychiatric comorbidity [Citation33,Citation34]. In our study, adverse outcomes of the disease were negatively associated with quality of life. In addition, headache severity was positively correlated with anxiety and depression scores. This may be an indication that migraine and TTH have common mechanisms with depression and anxiety and affect quality of life in all aspects.

Migraine and TTH affect the quality of life in all aspects. In a study evaluating the quality of life in patients with headache, it was observed that the physical and social functionality sub-dimension scores of SF-36 were lower in patients with migraine than those with TTH. The scores of patients with TTH were also found to be lower than the control group [Citation8]. In our study, the physical functionality scores of migraine patients were lower than those with TTH, but the difference was not statistically significant. The fact that migraine patients have more headache severity and duration than TTH patients may be one of the reasons for the decrease in physical functionality. Illness perception is significantly associated with psychological adjustment and physical-social functioning. The significant relationship between disease perception scores and psychological and clinical characteristics supports the fact that disease perception is among the treatment goals in migraine.

It has been shown that quality of life worsens after myocardial infarction, and fatigue and depression are the early predictors of this deterioration [Citation35]. In a study evaluating the quality of life in patients with alopecia areata, it was shown that the severity and duration of the disease, previous psychiatric disorders and being a woman were associated with a lower quality of life [Citation36]. In our study, headache frequency, severity, duration, and anxiety and depression levels were negatively correlated with all parameters of quality of life. In addition, it was found in our study that the illness perception significantly affects the quality of life. All these factors that affect quality of life may be related to adaptation to the disease. On the other hand, adaptation to the disease is accepted as an important factor affecting the prognosis.

6. Conclusion

Our study points to the results showing that the individual’s better recognition of the disease and improvements in other psychosocial factors in migraine and TTH patients will increase the individual’s quality of life. Explaining the disease to patients in detail, screening patients for anxiety and depression and making necessary treatment interventions, and increasing the education level of the society can improve the representation of the disease. The power of our study is limited due to the sample size and some data characteristics. Since the perception of illness was evaluated in our study, the control group was not included. In addition, no distinction was made about the number of visits when the patient was admitted to our study, and therefore, it was not possible to examine whether the situation affected the psychological and quality of life scales. Conducting large-scale studies in terms of the relationships between the psychosocial and clinical outcomes of the disease in migraine and TTH patients and certain sociodemographic characteristics specific to gender and age will provide more robust data. It should also be examined whether changes in illness perception mediate the efficacy of pharmacological treatments for TTH and migraine symptoms. Identifying and addressing negative illness perceptions in patients can improve their quality of life.

Author contributions

Medical Practices: Mustafa Acikgoz, Ulufer Celebi, Esra Aciman Demirel, Burcu Karpuz Seren

Concept: Mustafa Acikgoz, Bilge Piri Cinar, Hüseyin Tugrul Atasoy

Design: Mustafa Acikgoz, Esra Aciman Demirel, Hüseyin Tugrul Atasoy

Data Collection or Processing: Mustafa Acikgoz, Ulufer Celebi, Esra Aciman Demirel, Burcu Karpuz Seren

Analysis or Interpretation: Mustafa Acikgoz, Bilge Piri Cinar, Hüseyin Tugrul Atasoy

Literature Search: Mustafa Acikgoz, Ulufer Celebi, Hüseyin Tugrul Atasoy

Writing: Mustafa Acikgoz, Bilge Piri Cinar, Ulufer Celebi, Esra Aciman Demirel, Burcu Karpuz Seren, Hüseyin Tugrul Atasoy

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

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