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January, 2018 >>

Symptom management in Behcets disease

Filiz Ozel, Aynur Esen Tureyen, Fisun Senuzun Aykar  ( Department of Internal Medicine Nursing, Ege University Medical Faculty Hospital, Rheumatology Polyclinic, Turkey )

Abstract

Objective: To determine the symptoms experienced by patients diagnosed with Behcet's Disease and how they cope with them.

Methods: The qualitative study was conducted from September 2013 to March 2014 at Ege University Medical Faculty Hospital, Turkey, comprising patients having all symptoms of Behcet's Disease. Data was collected through semi-structured focus-group interview form. The findings were assessed using Theory of Unpleasant Symptoms and Symptom Management Theory. SPSS 20 and Nvivo 10 were used for data analysis.
Results:
Of the 35 patients, 16(45.8%) were female and 19(54.2%) were male. The symptoms affected patients' lives, and the patients used either positive or negative symptom management strategies, leading to either positive or negative results during symptom management.
Conclusion:
Behcet's Disease patients needed effective symptom management.
Keywords:
Behcet's Disease, Theory of Unpleasant Symptoms (TOUS), Symptom management theory. (JPMA 68: 46; 2018)

Introduction

Behcet's Disease (BD) is a chronic multi-systemic disease observed in young adults and characterised by artery and vein nerve vasculitis.1,2 The symptoms occurring in BD may negatively affect the patient in terms of physical, psychological and social aspects, and patients use a variety of methods to cope with this disease.3-6 BD may negatively affect individuals' appearance, psychosocial status, personal relationships and daily activities. It also affects quality of life by restricting individuals' daily activities and lifestyle, and causing distortions in their mental health.7,8 So, this study used the Theory of Unpleasant Symptoms (TOUS) and Symptom Management Theory to understand patients' symptoms and coping methods. TOUS has three main components: symptom(s), affecting factors and performance results.6,9,10 It is observed that three factor categories (physiological, psychological and situational) connect with each other and affect the type of symptom experience. Additionally, this theory accepts that the symptom experience affects the individual's performance (including cognitive, physical and social functions).3,6 Symptom Management Theory was established in order to eliminate the symptom or minimise the distress caused by the symptom experience.11-13 The three main concepts of Symptom Management Theory are symptom experience, symptom management strategies and symptom status results.12 The current study was planned to determine the symptoms experienced by patients diagnosed with BD, the factors that affect the symptoms, the effects of symptoms on patients, and the methods and resources patients use to cope with these effects.

Patients and Methods


The qualitative study was conducted from September 2013 to March 2014 at Ege University Medical Faculty Hospital Rheumatology Polyclinic, Turkey, and comprised patients having all the symptoms. However, patients
expressed their complaints that they experienced most frequently. The study collected data after conducting focus-group interviews through a semi-structured focus-group interview form. Each patient was given 10-15 minutes to talk during the focus-group interview and the data was noted. An appropriate physical environment was created prior to the focus-group interviews to make the exercise comfortable and efficient. The executive and the observer were also introduced prior to initiating the interviews.
The concepts, cases, and processes that emerged were included in the subsequent data-collection stages. The interviews were transcribed from tape recordings. Permission was obtained from the institutional ethics review committee. Participating patients gave verbal and written consent after necessary explanations were given regarding the purpose and methodology of the study and the results expected to be obtained. SPSS 20 and Nvivo 10 were used for data analysis.

Results

Of the 35 patients, 16(45.8%) were female and 19(54.2%) were male. The mean age of the patients was 44.8±10.8 years (range: 19-62 years) and their mean duration of disease/week was 565.4±506.8 (range: 3.0-2160.0). All the themes generated through the interviews were noted (Table).


Discussion

This study discussed three sub-themes, titled Symptoms, Symptom Perception, Symptoms' Effects on Individuals' Lives and Symptom Management. Symptoms are based on the perceptions of individuals.14 The symptom experience involves personal symptom perception, symptom evaluation, and symptom response. Symptom perception defines people's feelings or behaviours regarding the symptom.1 In this study, the patients expressed that they have so much trouble because their disease is seen as contagious by themselves and the people around them. The patients also believed that the disease is completely contagious and feared that their children will be exposed to the same difficulties.
The symptoms of BD have negative effects on people's lives; therefore, patients need individual symptom management.15 Literature shows that patients have some stress about not being able to perform their familial roles. Eren et al. evaluated the quality of life of BD patients having or not having symptoms with Short Form-36 (SF-36) questionnaire  and observed a similar increase in role difficulties due to physical health and mental problems in patients with symptoms.16 Joint involvement prevents the BD patients from performing their activities of daily living and restricts their social relationships by causing pain and limiting range of motion.7 Kilinc et al. reported that the patients' relationships with other people are destroyed, they distance themselves from the people around them, had negative thoughts, had difficulties in performing daily activities, and became more anxious about future.1 The recurrent and painful oral ulcers in BD patients also cause nutrition problems.16M Gilworth et al. stated that BD limits patients' activities of daily living and negatively affects their self-confidence and their relationships with other people, and the painful oral ulcers hinder patients' ability to speak and eat; they also have a negative effect on body image.8 BD symptoms negatively affect individuals' lives and require symptom management. Due to the relationship between symptoms and quality of life, effective symptom management is important in terms of improving patients' quality of lives.17 For these reasons, effective symptom management should be determined and supported by evidence-based studies.14 Patients cope with these negativities as they gain information and experience over time. The more logically the informed patients interpret the effects emerging after treatment, the more easily they accept them.7Health professionals have a major task at this point.18 BD means uncertainty for patients' lives and therefore prevents the development of effective coping methods. It is critical for all medical staff to recognise the concept of uncertainty, which may be
experienced in all periods of life but gains more importance in case of a disease, and to take it into consideration in understanding and helping the patient during the recovery period. People begin to seek knowledge in order to interpret the situation objectively and develop effective coping behaviours.19
This study showed that patients used a variety of positive and negative symptom management strategies (Table). Some people cope with BD better than others. The characteristics of self-effectiveness are tolerance, hope, personal skills, optimism and consistency.20 The optimistic patients use problem-oriented coping strategies because they show a positive change.15 Researchers generally regard non-problem-oriented coping methods as variations of emotion-oriented coping (focussing on and expressing emotions, interrupting behavioural attention, and interrupting mental attention).21 Acceptance should not be seen as hopelessness; it is an understanding of the seriousness of both the disease and the situation.21,22 Hopelessness, despair, different expectations, ignorance and social pressures on the family are among the most important factors that push patients and families to seek methods other than traditional treatment methods.23 As seen in this study, patients receive supportive treatments due to depression. Cognitive-behavioural or self-treatments improved pain and depression symptoms in rheumatic diseases. The fact most emphasised by patients in symptom management was the importance of stress-free life. Stress is a common problem occurring in most arthritis patients.15 The patients in this study again emphasised the importance of avoiding distress which is in line with literature.20 When interviewed, patients also stated that they pay attention to treatment plans and disease symptoms and stressed self-efficacy. There was only one previous study regarding the coping methods used by BD patients. Karlidag et al. reported that patients' first feelings about BD were fear, sadness, anxiety, despair and curiosity (74.9%), and they mostly used active relaxation strategy (36.1%), distraction strategy (25%) and avoidance strategy (25%) to cope with the disease. They emphasised that psychiatric symptoms occurred more frequently in those having difficulty in coping with their problems.24

Conclusion

This study found that the symptoms affected the way patients live and thus need symptom management. The patients performed effective or ineffective symptom management using positive or negative symptom management strategies. Those performing effective symptom management had fewer symptoms than those who performed ineffective symptom management. It is therefore recommended that healthcare providers should give patients detailed information about the symptoms and symptom management strategy. Healthcare providers should also emphasise the importance of adjusting to medical treatment, diet and regular exercise, and teach how to cope with their disease.

Disclaimer:
None.
Conflict of Interest:
None.
Source of Funding:
None.

References

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