DETERMINATION OF EFFECT ON ASTHMA CONTROL OF ILLNESS PERCEPTION OF ASTHMA

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1 Acta Medica Mediterranea, 2014, 30: 591 DETERMINATION OF EFFECT ON ASTHMA CONTROL OF ILLNESS PERCEPTION OF ASTHMA PATIENTS GÜLCAN BAHÇECIOĞLU 1, RAHŞAN ÇEVIK AKYL 2 1 Nurse, MSC, Elaziğ Teaching and Research Hospital, Elaziğ - 2 Adnan Menderes University, Söke Health High School, Department of Internal Medicine Nursing, Aydin, Turkey ABSTRACT Objectives: This study aimed at characterizing the effect of the illness perception of asthma patients on their disease control. Materials and methods: This study was conducted in 200 patients who consulted between June and August 2012 at the Chest Diseases outpatient clinics and satisfied the eligibility criteria. A patient data form, the Revised Illness Perception Questionnaire (IPQ-R) and the Asthma Control Test (ACT) were used for data collection. Results: Significant differences in IPQ-R scores were found among patients groups differing as to age, marital status, number of children, family type and mean ACT scores (p<0.05). A direct correlation was present between most IPQ-R subscale and overall scores and the ACT score (p<0.01 and <0.05, respectively). Conclusion: When evaluated together with most of its subscales, illness perception was found to affect asthma control. Key words: Asthma, asthma control test, illness perception questionnaire, nursing. Received January 30, 2014; Accepted February 24, 2014 Introduction Asthma is a widespread, chronic disease with a worldwide increasing morbidity and mortality; it affects approximately 300 million people (1). According to the 2003 National Disease Load and Cost-Effectiveness (UHY-ME) Study, Household Survey, asthma prevalence among persons aged over 18 was 3.87%, or approximately 4 million persons (2). The acknowledged main objective of asthma treatment is control of asthma, in order to avoid undesirable effects tied to the disease (3,4). Asthma control means a total absence of patient complaints, normal respiratory function and a normal daily life, i.e. living as a healthy person. Various methods are available to characterize the level of asthma control such as questionnaires and respiratory function tests. Surveys inquire about elements such as diurnal manifestations, activity restriction, nocturnal manifestations/ sleep interruption, frequency of tranquillizer use and frequency of attacks. One of the most relevant factors in realizing asthma control is the correct expression of illness perception (5-7). Medical publications indicate that illness perception is relative to coping with the disease, the use of medical treatment and the assessment of treatment results (8,9). According to studies characterizing the relationship between illness perception and outcomes, the clinical course of disease is more favorable in patients with a high inner self-perception of control (10-12). Certain patients perceive their disease entirely negatively, indicating that it is restricting their freedom. It is reported for chronic diseases that patients unable to express correctly their illness perception are inadequate in disease control (13-15). The patients views on their chronic illness are rarely inquired by health care professionals;

2 592 Gülcan Bahçecioğlu, Rahşan Çevik Akyl patients, on their side, often fail to express their beliefs concerning their own illness. Published studies, on the other hand, establish that more effective disease control is obtained when individual patients correctly perceive their illness (14-17). As health care professionals, nurses must, as part of their approach, elicit the patients' interpretation and perception of their own disease, the emotional and behavioral responses presented, their coping mechanisms and their psychosocial reactions in order to help the patients manage and control their illness. This study was designed to characterize the effect of asthma patients' illness perception on disease control. Materials and methods Study Type This was a descriptive and correlational study. Time and Location of Study The study was performed at the Elaziğ Teaching and Research Hospital Chest Diseases Department Outpatient Clinics and the Vision private Chest Diseases Physical Therapy and Rehabilitation Branch Center between June 2012 and December Study Universe and Study Sample The study universe consisted of patients with an asthma diagnosis for six months or longer who came to the Elaziğ Teaching and Research Hospital Chest Diseases Department and Vision FTR Chest Diseases Branch Center. Subjects were selected by non-probability convenience sampling. The study sample consisted of 200 patients who consulted the outpatient clinics between June and August 2012 and satisfied the eligibility criteria (absence of known malignant disease, openness to communication and cooperation, absence of psychiatric diagnosis). Data Collection A patient information form prepared by the investigator was used, consisting of nine questions. The Revised Illness Perception Questionnaire (IPQ-R) The Illness Perception Questionnaire was developed in 1996 by Weinmann (15) and revised by Moss-Morris et al. (18) in The validity and reliability of the questionnaire for Turkish society has been established by Kocaman et al. in 2007 (12). IPQ- R includes the illness identity, illness representation and causal dimensions. The illness identity dimension consists of 14 commonly experienced symptoms: pain, sore throat, nausea, breathlessness, weight change, fatigue, stiff joints, sore eyes, wheeziness, headache, upset stomach, dizziness, sleep difficulties and loss of strength. For each of these manifestations the patients were asked first whether or not they had experienced it since the start of their illness, then they were asked whether or not they believed the symptom to be specifically related to their illness. This dimension is structured to have both of these questions for each item answered by either yes or no. The total count of yes answers to the second question represents the score for the illness identity subscale. The illness representation dimension comprises 38 items, using a five-point Likert-type scale. This dimension is divided over seven subscales, called timeline (acute/chronic), consequences, personal control, treatment control, illness coherence, timeline (cyclical) and emotional representations. The Timeline subscales explore the individual perceptions of the disease development in time; it is grouped as acute/chronic and cyclical. The Consequences subscale studies the patient s beliefs relative to disease intensity and its possible physical, social and psychological effects. Personal Control queries the person s perception of internal control over the disease timeline, course and treatment. Treatment Control reflects the subjective belief regarding the efficacy of the treatment received. Illness Coherence studies the degree of understanding or conceptualization of the disease by the patient. Emotional Representations reflect the patient s feelings in front of the illness. The causal dimension includes 18 items on the origin of the disease. It also uses a five-point Likert-type scale. This dimension queries the patient s thoughts on the possible causes of the disease; it includes four subscales. The causal items include psychological attributions (as for example stress or worry, family problems or worries, personality), risk factors (e.g. heredity, smoking, alcohol, aging), immunity (items such as germ or virus, altered immunity), accident or chance (accident or injury, chance or bad luck). The validity and reliability study of this questionnaire for Turkish society showed a Cronbach s α coefficient of for the subscales of the illness representation dimen-

3 Determination of effect on asthma control of illness perception of asthma patients 593 sion, while the same α coefficient of the causal dimension subscales varied between 0.25 and 0.72 (12). The study reported here showed a Cronbach s α coefficient of 0.57 for the identity dimension, 0.55 for the illness representation dimension and 0.45 for the causality dimension. Asthma Control Test (ACT) The ACT was developed with the objective of performing a multidimensional evaluation of asthma patients aged 12 and older that would be usable both in the primary and secondary care settings, able to define clinical evolution, applied easily and quickly, evaluated without difficulty and convenient for clinical use. Its validity and reliability testing was performed by Schatz et al. in 2006 (19). This test queries both diurnal and nocturnal asthma manifestations during the last four weeks, the use of rescue medication and the impact on daily activities in five questions. Responses are structured as five-item Likert-like choices; scores for each response are added to evaluate the patient. The possible score varies from a minimum of 5 to a maximum of 25. An ACT score of 25 is accepted as controlled, as partly controlled, and a score of 19 or lower as poorly controlled. The respective level of control, especially for scores under 20, indicates a need for treatment modifications in order to reach better control. Cronbach s α coefficient for the study here presented was calculated to be Ethical considerations Prior approval for the study was obtained from the Atatürk University Health Sciences Institute Ethical Committee. The study objectives were explained to the patients, who consented orally to participate. The patients were informed that their personal data would be used for scientific purposes only. Data Evaluation The NCSS (Number Cruncher Statistical System) 2007 Statistical Software (Utah, USA) was used for data analysis. Descriptive statistics (average, standard deviation) were calculated; normally distributed continuous variables were compared between groups with one-way analysis of variance and Student s t-test. Parameters not fitting a normal distribution were compared using the Kruskal- Wallis and the Mann-Whitney U tests. Normally distributed parameters were tested for two-group correlation by the Pearson correlation coefficient calculation. Results were expressed with their 95% confidence limits; a p-value <0.05 was accepted as significant. Results Demographic characteristics of patients in the study are shown in Table 1. The 30.5% of patients were aged 31-40; 71% were female, 85% married; 21% had completed primary school or an equivalent, 50.5% were gainfully occupied while 49.5% were homemakers. The family type was defined as nuclear in 88.5% of cases and 27% had two children; the income of 84% of the patients was equal to their expenses; 55% had never smoked. A comparison of ACT scores by age group was highly significant (p<0.01); the highest score was found in the year-old group and the lowest among patients aged ACT score by education status also was highly significant (p<0.01). It was found to be highest in college and university graduates (Table 1). These scores were significantly higher in single patients as compared to the married (p<0.05). A highly significant difference was also found according to the number of children (p<0.01); patients with a single child had the highest and those with 5 or more children the lowest scores. Similarly, patients living in nuclear families had a higher ACT score than those living in extended families (p<0.01; Table 1). A comparison of ACT scores by age group was highly significant (p<0.01); Comparing by occupation status, employees had the highest scores and homemaker women the lowest. ACT scores were highly significantly different when compared across income classes (p<0.01). Comparing by occupation status, employees had the highest scores and homemaker women the lowest. When comparing averages of ACT scores according to patient sex or smoking, no statistically significant difference could be identified. Also, 55% of the patients in the study had achieved partial control (Table 2). The IPQ-R Illness Identity average score (± 1SD) was 6.99±1.74, the highest average score among the different subscales of the Illness Representation dimension, 22.28±2.39 was in the Results and for the Causality dimension it was in the risk factors subscale with 18.99± (Table 3).

4 594 Gülcan Bahçecioğlu, Rahşan Çevik Akyl Demographic Characteristics N % mean ACT Score SD Test statistic; p-value Age F: ; p:0.001** Sex Female Male Illiterate t:-1.066; p:0.288 Education Status Literate Elementary School Middle School High school F: ; p:0.001** College / University Marital Status Number of Children Married Single Z:-2.726; p: 0.006** χ2=34.75; p:0.001** Family type Nuclear Extended Z:-3.209; p:0.001** Homemaker Occupation Laborer Independent Employee χ2=35.622; p:0.000** Income Status Income < Expenses Income= Expenses Income > Expenses χ2=11.539; p:0.003** Smoking Table 4 shows that breathlessness and wheeziness were found in all patients; they were followed in frequency by sore eyes and sore throat. Weight loss and stiff joints were the least frequent symptoms. Never Stopped Still smoking Table 1: Comparisons of Asthma Control Test score means according to demographic characteristics. *p<0.05, **p<0.01 F: One-way ANOVA test t: Student s t-test Z: Mann Whitney U test χ2: Kruskal-Wallis test F:2.036; p:0.133 An inverse correlation was found between the ACT score and any the IPQ-R Illness identity, Personal Control, Psychological Attributions, and Accident and Chance subscores (p<0.01).

5 Determination of effect on asthma control of illness perception of asthma patients 595 A positive correlation was present between ACT score and the IPQ-R Illness Coherence, Results, Immunity and Timeline (Cyclical) subscales (p<0.01 and p<0.05) No correlation could be established between the Treatment Control and Risk Factors IPQ-R subscores and the ACT score (Table 5). Discussion N % Controlled Partially Controlled Poorly Controlled Table 2: Distribution of Asthma Control Test Score Means. 2.Illness Representations 3.Causal Dimension Mean SD Min Max 1. Illness Symptoms Personal Control Timeline (acute/chronic) Emotional Representations Illness Coherence Consequences Treatment Control Timeline (Cyclical) Psychological Attributions Risk Factors Immunity Accident or Chance Table 3: Distribution of IPQ-R Score Means. A comparison of ACT scores by age group was statistically highly significant; the highest score was found in the year-old group and the lowest among patients aged Among the possible causes of the fall in the asthma control level with age are problems specific to the advanced age group, such as cognitive and physical regression, the abandonment of a productive function, changes in the social environment, weakening of interpersonal support and the loss of health (20,21). While no significant difference in ACT scores could be established relative to the patients sex, mean scores appeared higher in males. This finding is similar to the result obtained by Bozkurt et al. in a study performed in asthma patients (22). Such an appearance may be linked to hormonal causes in women, who also have a higher incidence of bronchial hyperactivity and more restricted post-puberty development of airways than in men (22,23). The differences in ACT score by education status also were highly significant. The highest score in our study was found in the college or university graduates. Published studies indicate that a rise in the education status is paralleled by increased awareness and better quality of life (21,24), as was the case in our study. The ACT scores were significantly higher in single patients compared to the married. It may be speculated that such a difference is due to the small number of single patients, and the fact that such subjects were mainly young. The differences in ACT score by the number of children also were highly significant. The average ACT score of patients with a single child was highest and that of parents of five or more children lowest. The fact that the more children they have, the less parents can find time for themselves and experience psychological fatigue due to the heavier responsibility load may perhaps be at the root of such a difference. The differences in ACT score by type of family also were highly significant. People in nuclear families had a better score. It has already been reported that, as with various other chronic diseases (25-26), family support plays a significant role in coping with asthma (27). Managing asthma in persons living in extended families may therefore become more difficult. The higher ACT score of patients living in nuclear families may have been due the small proportion of patients in extended families, a higher amount of time at the disposal of those in nuclear families, or a higher level of care for the latter. When comparing patients according to their occupation, the lowest scores were found in homemakers. A major group of etiological factors for asthma is that of environmental factors (1). The poor asthma control level of homemakers may perhaps be due to the higher exposure to a large number of sensitizers and allergens in the home.

6 596 Gülcan Bahçecioğlu, Rahşan Çevik Akyl Symptoms I experienced this symptom since the start of illness This symptom is specifically related to my illness N % N % Pain Sore throat Nausea Breathlessness congestive heart failure patients found that patients reported a total of 7.63 perceived disease-oriented symptoms (32). This finding suggests that patients had been experiencing these symptoms since the start of their illness and only later saw these manifestations as related to their disease. Asthma Control Test Weight change r p Fatigue Stiff joints Sore eyes Wheeziness Headache Upset stomach Sleep difficulties Dizziness Loss of strength Table 4: Distribution of Illness Symptoms and Illness Identity. The comparison of different income classes of patients showed the best ACT score averages in those with an income exceeding expenses. A study by Kaufman had reported higher frequencies of asthma in patients from low-income families (28). Horner et al. have indicated that family income affects asthma management (29). Our findings were thus consistent with earlier results. Asthma, a chronic disease, may negatively affect family finances due to drug expenses, irregularity in work schedules, the need to attend control visits, etc. No significant differences in ACT scores were found when comparing patients by their smoking status. 4.5% of patients achieved control, 55% partial control and 40.5% were poorly controlled. A study report on asthma control indicated that 26.1% of patients were controlled, 40.7% partially controlled and 33.2% poorly controlled (30). In the study published by Abadoğlu, 64.4% of patients were characterized as poorly controlled based on their ACT scores (31). Such results indicate a relatively low control of asthma in Turkey. In our study of IPQ-R score means of asthma patients, their mean Identity subscale for symptoms was found to be 6.99±1.74. A study by Ciddi in Symptom ** Illness representation Personal control ** Timeline (acute/chronic) Emotional representations ** Illness coherence ** Consequences ** Treatment control Timeline (cyclical) * Causality Psychological attributions ** Risk factors Immunity ** Accident or chance ** Table 5: Correlations between mean IPQ-R Scores and mean Asthma Control Test scores. r: Pearson s correlation coefficient *p<0.05 **p<0.01 The fact that a minimum of 6-7 symptoms were being experienced may be related to the chronic character of the illness in both studies. Among the subscales in the illness representations of patients, results, emotional representations, timeline (acute/chronic) and personal control score averages were higher than the others. The consequences score was highest, while the lowest was in the illness coherence subscale. Looking at the items that make up the consequences subscale of illness representation, patients who confirmed the statements my illness has major consequences on my life, my illness causes difficulties for those who are close to me, my illness is a serious condition, My illness has serious financial consequences and my illness strongly affects theway others see me were in the

7 Determination of effect on asthma control of illness perception of asthma patients 597 majority; the high score obtained in this subscale thus shows that the patients believe the disease to be chronic (12). It has been reported that the knowledge by the patients that their illness is chronic and the increase in awareness improve personal control of the disease (14). As for the items in the emotional representations subscale in the same illness representation dimension, emotional symptoms were intensely perceived. In asthma patients, the medical and psychosocial problems created by chronic disease combine with the troubles of drug treatment, leading to negative emotions such as anger, anxiety, sadness and fear (33,34). Psychologic counseling may reinforce positive perceptions by focusing on the patients worries. Another relevant finding of the study is the high average score of the timeline (acute/chronic) subscale that explores the patient s perception of the illness duration. Responses to the timeline subscale show that the large majority of patients expect their illness to last for a long time; they see it as likely to be permanent rather than temporary and expect to have this illness for the rest of their life, confirming that they perceive themselves as having a chronic disease and that they are adapting to this process. This finding in our study was also consistent with earlier published reports (14,32). Responses to the personal control subscale items in the illness representations dimension show a majority answering the course of my illness depends on me and what I do can determine whether my illness gets better or worse. A study in hemodialysis patients by Karabulutlu and Okanli similarly found a high personal control perception (14). The average score of patients who, in the treatment control subscale of the same subdimension, answered my treatment can control my illness, my treatment will be effective in curing my illness or the negative effects of my illness can be prevented/avoided by my treatment was low. Patients in Ciddi s study were reported as believing that heart failure could be brought under control by treatment (32). The results of our study may be thought to be due to the fact that the patients did not entirely believe that their illness was controllable and/or were insufficiently informed of its nature. The average score were similarly low for patients who answered my symptoms come and go in cycles, the symptoms of my illness change a great deal from day to day or I go through cycles in which my illness gets better and worse in the timeline (cyclical) subscale. Patients in the Ciddi study expressed their belief that their disease was chronic and cyclical (32). The reason for the patients only incompletely being convinced that their disease is chronic and cyclical may be due to the fact that these patients had not been sufficiently informed at the outpatient clinics with regard to their disease. Average score was also low for patients who answered items in the illness consistency subscale by choosing the statements I have a clear picture or understanding of my condition, I don't understand my illness, my illness doesn't make any sense to me, my illness is a mystery to me or the symptoms of my condition are puzzling to me. Understanding their disease is relevant for the patients in order to believe in and pursue their treatment (26,35). The high scores in this dimension indicates that the patient understands the illness, while low scores in this study may be the result of insufficient information provided to the patients who consult at the outpatient clinics. As for the causal dimension, patients generally indicated risk factors and psychological attributions as the source of their illness; the less frequently mentioned cause was accident or chance. Patients mostly interpret disease causes and consequences based on previous experiences of acquaintances or self. This in its turn affects the patients behaviors and thoughts in either a positive or negative sense (36).Next to individual perceptions concerning the illness, cultural affinities are relevant for the patients representations. When evaluating the causes of illness in general, one sees stress, distress and anxiety most frequently indicted as a cultural reflection of Turkish society (14). An evaluation of symptoms and illness identity shows that breathlessness and wheeziness were found in all patients since the beginning of the disease. They were followed in frequency by pain, sore eyes and sore throat. Weight loss and stiff joints were the least frequent symptoms. Published studies document that asthma patients very frequently experience difficult breathing, wheezing and cough (35,37). An inverse correlation was found between the ACT score and any the IPQ-R Illness identity, Personal Control, Psychological Attributions, and Accident and Chance subscores. Such a negative dependence of ACT score with disease symptoms is an expected result. In patients who generally

8 598 Gülcan Bahçecioğlu, Rahşan Çevik Akyl receive irregular or insufficient treatment, or those who are exposed to a trigger, asthma symptoms may rapidly escalate to create an asthma attack, which in turn makes asthma control more difficult (38). Our study results are consistent with the report by Sekerel of a majority of asthma patients having experienced severe symptoms, and that 1.3% only or those patients who believe to be controlled or partially controlled have effectively achieved control according to the guidelines (39). The inverse correlation between the ACT average score and psychological attributions, accident or chance and personal control subscales may perhaps be explained by the following hypothesis: the absence of control of chronic illness increases symptoms and depressive states, leading to impairment in quality of life. Mood disturbances also impair disease control (36,40). Results reported from a study by Bozbaş et al. (23) show that a failure to bring asthma under control causes symptoms of depression. A patient in a similar situation may be expected to turn to psychological attributions in indicating a cause for the illness; a negative influence of asthma control is likewise to be expected. As asthma is progressively brought under control, a change in attributed causes towards psycho-social issues, such as stress, worry, anxiety or familial troubles would be expected. Taking refuge in accident or chance being a sort of defense mechanism caused by worry and anxiety, superstitious attributions would be expected to become less frequent. The smallest score for the causality subscale was in the item accident and chance. An inverse correlation was evidenced between this subscale and the ACT score. Attribution of the disease origin to accident or chance may be interpreted as the belief that the patient is placed before a situation as uncontrollable as the mentioned causes. It is to be expected that such a belief would negatively affect disease control. Even though the personal control subscale may be seen as reflecting the positive perception that the illness is controllable, this subscale was in an inverse correlation with ACT score. Such a result may be due to insufficient information of the patients. A positive correlation was present between average ACT score and the illness coherence, timeline (cyclical) and emotional representations subscale scores. This is explained by the greater awareness shown by those patients who understand the cause of the disease correctly, as linked to environmental factors such as germs and immunity, realize the serious consequences that may arise, understand their illness and its cyclical nature, therefore able to achieve higher ACT scores. As for the positive correlation between emotional representations and ACT scores, it may be due to greater attention to detail, in the patients with more intense anxiety about controlling their illness. Conclusion Asthma control in our patients was incomplete; a comparison of ACT scores by certain demographic characteristics showed statistically significant differences. A positive correlation was present between ACT score and the IPQ-R subscale scores for emotional representations, illness coherence, consequences, immunity and timeline (cyclical). Knowing the patients own perception of their illness is highly relevant to its management; it has to be taken into account by all health care personnel starting with the nurses. Education and awareness actions on illness perception evaluation may be proposed to health care teams. References 1) Global Initiative for Asthma (GINA). Global Strategy for Asthma Management and Prevention NHLBI/WHO work-shop report. National Heart, Lung and Blood Institute /22/ ) Türkiye Kronik Hava Yolu Hastalıklarını (Astım- KOAH) Önleme ve Kontrol Programı ( ) Eylem Planı. (Action Plan for the the Turkish Program for Chronic Airways Disease (Asthma-COPD) Prevention and Control ) TC Sağlık Bakanlığı (Turkish Republic Ministry of Health). Ankara: Anıl Matbaacılık, (2009). 3) Fu J, McDonald VM, Wang G, Gibson PG. (Asthma control: how it can be best assessed?) Curr Opin Pulm Med 2014; 20: ) Nathan RA, Sorkness CA, Kosinski M, Schatz M, Li JT. Asthma Control Test: reliability, validity, and responsiveness in patients not previously followed by asthma specialists. Journal of Allergy and Clinical Immunology 2006; 117: ) Fesçi H, Görgülü Ü. Astım ve yaşam (derleme) (Asthma and Living (review)). Hemşirelik Yüksekokulu Dergisi (Nursing Superior School Journal) 2005; ) Arslan S, Tasçı S. Astım Kontrolünde Hasta Eğitimi. (Patient Education in Asthma Control). Fırat Sağlık Hizmetleri Dergisi (Euphrates Journal of Health Services) 2011; 6: ) Kucukarslan S, Plumley D, Chang A, Ueda A. Intending to adhere or to not adhere: Results from an

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