Analysis of the present situation and influencing factors of self-perceived burden in primary glaucoma patients

Fu-Liang Sun,Xiao-Hui An,Shu-Qing Cao

1Nursing School,Tianjing University of Traditional Chinese Medicine,Tianjing,China; 2Department of Ophthalmology,Tianjin Eye Hospital to Medical Univerisity of Tianjin,Tianjin,China.

Abstract

Keywords:Primary glaucoma,Self-perceived burden,Root cause analysis

Introduction

Primary glaucoma is one of the eye diseases that can cause blindness when the pressure in the eyeball exceeds the limit of the optic nerve, causing optic nerve atrophy and visual field defect [1].The prevalence rate is 3.8% [2].The hidden optic nerve damage seriously affects the physical and mental health of patients and reduces the ability of self-care.Most patients have anxiety and fear [3].Fear of psychological problems, long-term treatment brings heavy financial burden to patients and their families.Patients are prone to negative emotions such as guilt,depression, self-blame and shame, resulting in self-perceived burden (SPB) [4].SPB, as a bad psychological feeling, has been found in many countries and different diseases.It has been reported in the study that foreign studies pay more attention to caregiver's SPB, but less to patients themselves [5-6].Patients not only suffer from disease, but also often care for caregivers.They seldom express their inner feelings,but also need the attention of medical staff[7].This study started with investigating the status of SPB in primary glaucoma patients,and analyzed its possible influencing factors to provide theoretical basis for clinical alleviation of SPB.

Methods

This survey was conducted from August to October,2018, 236 patients with primary glaucoma were selected from two general tertiary A-level hospitals and a specialized tertiary A-level hospital in Tianjin.Written informed consent was obtained from those who agreed to participate after explaining the research aim to patients with primary glaucoma.

Participants were eligible for inclusion if they were in line with the diagnostic criteria of "Consensus of experts on diagnosis and treatment of primary glaucoma in China (2008)" [8]; age (＞18 years old)and informed consent; basic literary reading and language communication skills.Exclusion criteria were patients with severe diseases, tumors, history of psychosis and disturbance of consciousness.

Instrument development

The data collection instrument was a questionnaire counting of three parts.The first part is general situation questionnaire.The questionnaire was designed by researchers by consulting literatures, for filling in demographic characteristics, including participates' gender, age, educational level, marital status, personality characteristics, average monthly income of patients and medical burden (according to Likert 4 scoring method, it was very large, relatively large, relatively small and very small).Disease data included glaucoma type, binocular vision, surgical history and family history.

The second part was a self-perceived burden scale(SPBS) was compiled by Cousineau and his team agrees that SPBS including 10 items of 3-dimensional(physical, economic and emotional) to evaluate the perceived burden intensity of patients[4].Using Likert 5 grade scoring method, the evaluation methods were:"1" = never; "2" = occasional; "3" = sometimes; "4" =often;"5" =always, a total of 50 points,the total score＜20 no significant SPB, 20-29 was mild SPB, 30-39 was moderate SPB, ＞40 was severe SPB.In the guidance, the corresponding feelings caused by"glaucoma"are clearly pointed out.In this study,SPBS introduced by Wu YY[9],Cronbach's-alpha coefficient is 0.91 and retest reliability is 0.92.

The third part was a Medical Coping Modes Questionnaire (MCMQ) was developed by Feifel and his team [10].In this study, we used MCMQ introduced by Shen XH [11].There were 20 items which were divided into three coping strategies:face-to-face coping(8),avoidance coping(7)and yield coping (5).The higher the score, the more likely the patients were to adopt which coping strategies.The Cronbach's-a coefficients of each dimension are 0.69,0.60 and 0.76, and the retest reliability is 0.64, 0.85 and 0.67.

The pilot study of this instrument took place during a 3-month period at two hospital in Tianjing.The purpose and significance of the study were explained to the subjects who met the inclusion criteria.In order to prevent bias, the questionnaire was sent out by the researchers themselves on the spot.After checking, it was recovered.

Data analysis

To investigative patients with primary glaucoma about their Self-perceived Burden.All data were analyzed by using SPSS software, version 20.0.The applied statistical methods were as follow: ①For quantitative variables, the normality was assessed using the kurtsis and skewness coefficients and Kolmogorov-Smirnov test.If data were approximately normally distributed,They were presented as mean Counting data were described by frequency and percentage, and measurement data were described by mean ±SD;otherwise, they were presented as the median(minimum-maximum), and all thePvalues ＜0.05 were considered statistically significant.②Independent t-tests and correlation tests were used to explore the related factors for primary glaucoma patients.Univariate and multivariate (hierarchical)logistic regression analyses were used to identify the self-perceived burden of primary glaucoma patients.Data were entered twice independently and checked for errors to enhance the accuracy.

Results

A total of 250 questionnaires were set out and 14 questionnaires were rejected because of incomplete filling to participates.Finally, a total of 236 valid questionnaires were collected and the effective recovery rate was 94.4%.

Recording items scores, the highest mean score was Physical Burden (15.86 ± 4.734), the lowest mean score was Financial Burden (3.69 ± 1.415).In equivalent Items scores, the highest mean score was Financial Burden(3.668±1.225).The status of SPB in patients with primary glaucoma patients(31.14±9.30)was moderate(Table1).

Table1 The SPB score of primary glaucoma patients(N=236)

According to comparison of SPB in primary glaucoma patients with different demographic characteristics.The demographic data were as follows:①Gender：female 153(64.8%),male 83(35.2%); ②personality characteristics: extroversion (58.5%) are more than introvert(41.5%).③Glaucoma type:open angle (16.5%) far less than Angle closure (83.5%).Univariate analysis results showed that there were significant differences in personality characteristics,residence, monthly average income, medical burden,right eye vision (F = 6.634,P= 0.011) and surgical history with total SPB scores (P＜0.05), but there was no significant difference in risk factor of glaucoma -family history [12], which might be the less sample of this study(Table2).

The independent variables and assignments included in this study are shown in Table3.Multivariate linear regression analysis results showed that the significant related factors for patients with primary glaucoma were avoidance coping style, yield coping style,financial burden and right eye vision were the influencing factors of SPB,which could explain 45.7%of the total variance(Table4).

Discussion

Up to now, there is no standard cure plan for primary glaucoma.Protracted course of disease,poor eyesight and even blindness make the patients' physical and mental comfort decline, bring burden to caregivers,easily produce negative emotions such as self-blame,guilt and low sense of self-worth, and produce SPB.SPB is a kind of common psychological feeling in patients with impaired body function, and it is a negative emotion.

The results of this study showed that the SPB score of primary glaucoma patients was (31.14 ± 9.30),which was at a moderate level.This study is higher than that of diabetic retinopathy patients such as Zhang[13].The reason may be related to poor visual acuity recovery and easy recurrence after primary glaucoma surgery.Among them, the average score of economic burden items is the highest, and the reasons may be related to the gender and education level of the patients.More than half of the 236 patients are women(64.8%).Influenced by traditional ideas, more women are "in the main".Their average monthly income is relatively small and their economic pressure is high.In addition,62.2% of the patients with secondary and lower education level are women.Labor workers are the majority,and they know that money is hard to come by.Higher medical expenses increase the financial burden.In addition, the intraocular pressure of patients is closely related to the development of the disease.The patients often come to the hospital because of the elevated intraocular pressure, which increases the burden of the patients' body and family.Because the change of intraocular pressure is affected by patients'mood, eye habits and drug compliance, medical staff should actively and pertinently do well in health education and follow-up guidance, so as to reduce outpatient visiting rate and improve the status of SPB.

In this study, influencing factors of SPB in patients with primary glaucoma, both avoidance coping and yield coping were included in the regression model.Coping style is the external manifestation of patients'attitudes towards disease, and the SPB of patients with different coping styles is also different.Avoidance is the neglect and dilution of stress events.Primary glaucoma patients mainly conceal personality characteristics, and those with high degree of concealment adopt avoidance or submission coping styles [14].In this study, 58.5% of the patients with extroverted personality were ashamed of the inconvenience of action and vision after their vision declined.They were afraid of attracting different eyes after being discovered, and developed defensive psychology.They adopted a concealed avoidance attitude, which further aggravated SPB.In the investigation, patients were treated actively at the first diagnosis and relapsed at the later stage because of the elevated intraocular pressure.After treatment, the visual acuity did not improve significantly,resulting in a sense of powerlessness and resignation.Avoidance and resignation coping seriously affected the outcome of the disease.The SPB score of intervention group was lower than that of control group.It suggests that medical staff should give individualized comprehensive nursing to alleviate patients' SPB according to their attitudes toward diseases, explain their interests from a professional point of view,and let patients have a new understanding of the disease and face the disease positively and optimistically[15].

Table2:Univariate analysis of self-perceived burden in patients with primary glaucoma(N=236)

Table3:Independent variable assignment table

Table4:Multivariate linear regression analysis of self-perceived burden in patients with primary glaucoma(N=236)

Apart from, medical burden also entered the regression model, which was an important influencing factor of SPB.In this study, 148 patients (62.8%) with high medical burden were considered.The reasons may be related to their residence, average monthly income and operation history.Most patients need to follow the doctor's advice to come to the hospital for reexamination.Rural and township residents spend a lot of time and money to and from the hospital, lack of medical information, serious illness, long hospitalization time and high medical burden.The average monthly income of patients ＜ 3000 yuan accounts for 65.6% and ＞5000 yuan only 8.1%, which seriously affects the medical burden.The lower the average monthly income of patients, the higher the medical burden.The heavier the burden, which is consistent with the results of You [16].Economic factors play an important role in the prediction and evaluation of patients' SPB.In addition, patients receiving surgical treatment are more expensive than conservative treatment, with a higher medical burden and a heavier SPB, which may be related to the high cost of surgical treatment and psychological stress.It suggests that medical staff should give appropriate care and help, actively communicate with doctors and choose more suitable treatment methods, so as to reduce the medical burden of patients and reduce SPB.Besides, right eye vision also entered the regression equation model, which is one of the important influencing factors of SPB.It may be related to the fact that most of the subjects in this study are right eyes,and the visual acuity of the right eye is generally lower than that of the left eye.The patients are more sensitive to the decline of the visual acuity of the right eye,have obvious discomfort, and are consciously aggravated,which increases the SPB of the patients to a certain extent.Enlighten medical staff to do a good job of health education for glaucoma patients, teach patients the convenient method of correctly observing visual acuity and intraocular pressure, teach patients the role of drugs and correct medication methods, guide patients to understand and adjust their emotions,actively cooperate with medical care, improve or maintain the existing visual acuity.In order to improve or maintain the existing vision, alleviate SPB and improve the quality of life, it is necessary to use the eyes reasonably and stabilize the mood.

Limitations

When interpreting our results, several limitations should be taken into account.For example, the two hospital where our study take place were located in Heping District and Nankai District.Tianjing as one of the important cities, where hospital facilities are better than in other cities, so our results not be reflect the SPB related factors in other level of cities could not be ascertained in the nowadays.

Conclusion and suggestion

Self-perceived burden is an important aspect of psychological burden in the process of primary glaucoma.This study found that patients' SPB was moderate.Avoidance and submission coping style,medical burden and right eye vision were the important influencing factors of SPB.Enlighten nurses to give early intervention to the influencing factors of SPB,maintain or improve vision, reduce the incidence and severity of SPB, and improve the quality of life of patients.Family members and friends are encouraged to actively participate in the care of glaucoma patients,so as to reduce the impact of the disease on their social functions, emotions and interpersonal relationships,and alleviate the SPB of primary glaucoma patients.At the same time, more attention should be paid to the multi-center study of SPB level in rural and township primary glaucoma patients in the future.