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Improving Quality of Life among Women with Endometriosis: An Intervention Study

Hanan Morsy Salim Metwally*, Mervat Mostafa Abdel Monem Desoky

Lecturer of Obstetrics and Gynecological Nursing, Faculty of Nursing, Zagazig University, Egypt

Abstract: Background: Endometriosis is among the most common gynecological diseases, which could have considerable physical, psychological, and social effects on the patient's Life. Endometriosis affects the safety and wellness of women, and decreases the physical quality of life. Aim of the study was to improve quality of life among women with endometriosis .Subjects& methods: Research design: A quasi-experimental design was used. Setting: the study was carried out in obstetrics and gynecology outpatient clinic at Zagazig university hospitals, Sharkia Governorate, Egypt, between the period from July 2017to January 2018. Subjects: a purposive sample of 60 women diagnosed with endometriosis and divided equally into intervention and control groups. Tools of data collection: Four tools were used in this study. A structured interviewing questionnaire, Numerical rating scale, Endometriosis Health Profile Questionnaire-30 and intervention program.Results: The findings of this research showed that, there was no statistically significant difference in demographic and obstetric characteristics between two groups (p 0.05). There are significant improvement regarding quality of life and decreasing level of pain among the intervention group than the control group after using of self-management strategies than pre assessment. Conclusion: The educational program about self-management strategies to cope with endometriosis has a significant improvement of women's quality of life. Recommendations: Provide continuous health educational program on self-management strategies for women diagnosed with endometriosis to improve quality of life and reduce pain.

Keywords: endometriosis, quality of life, intervention study

Received September 12, 2018; Revised October 20, 2018; Accepted October 28, 2018

Citation: Hanan Morsy Salim Metwally, Mervat Mostafa Abdel Monem Desoky, Improving Quality of Life among Women with Endometriosis: An Intervention Study. American Journal of Nursing Research, 6 (6). 668-678. January 2018. doi:10.12691/ajnr-6-6-38

1. Introduction

Endometriosis is an endometrial-like tissue that develops outside the uterus. Endometriosis causes pain and adhesions to chronic inflammatory reactions. Its incidence and symptoms can differ during the menstruation process of a woman as the hormone levels fluctuate [1]. At some times, in the process, symptoms may get worse, particularly just before and throughout the menstrual period of the woman. Although some women with endometriosis suffer from severe pelvic pain, others have almost no symptoms or find their symptoms to be ' regular menstrual pain [2].

Endometriosis affects approximately 10% of child bearing women [3]. Egyptian endometriosis prevalence in adolescents with severe dysmenorrhea was 12.3% from January 2012 to October 2014 In Dakahliа Governorate [4].

According to the American Society of Reproductive Medicine, endometriosis may be graded I-IV (I-minimal, II-mild, III-moderate and IV severe) Focused on the location, degree and deep of the endometrial implants, the incidence and extreme of adhesions and the diameter of the ovarian endometrium [5]. Endometriosis has effect on women with specific Signs and symptoms such as; sever pelvic discomfort, infertility, dysmenorrhea, painful intercourse, abdominal pain, weakness, sexual impairment, dysuria, dysphasia and lake of healthy and active body conditions [6].

The endometriosis causes are remaining unclear. There is likely no single cause; genetic, Physical and behavioral factors may influence the condition. While treatments are available, they don't always effective. There is currently no cure for endometriosis, with recurrence of symptoms usual after medical or surgical treatments. This is recognized, that early detection and management can lead to improved long-term management, including reducing the effect of symptoms and improving quality of life, allowing people with endometriosis to live healthier lives [7].

Quality of Life (QOL) is a complex term which combines physical, social and wellbeing elements combined with a specific disease or its management [8]. Endometriosis adversely impacts physical, emotional and social well-being and thus has a detrimental effect on the quality of life in relation to health [9]. Quality of life domain is considered a core aspect of healthy [10].

Maternity nurses have an important role to promote health by providing woman with endometriosis with support and knowledge needed. In addition, nurses can promote the quality of care and effectively manage therapies to enhance quality of life, decrease pain to avoid other diseases [11]. The nurse should also give the woman time to express feelings about symptoms and its care [12].

Coping strategies are a wide range of behavioral, emotional, or cognitive efforts to manage stressful events [13]. The way an individual copes with a stressor can reduce or exacerbate the levels of stress experienced, resulting in a number of positive or negative mental and physical outcomes [14].

Endometriosis affects the health and wellness of women, and decreases the physical quality of life [15]. Non-surgical treatments such as anti-inflammatory drugs, oral contraceptive pills and hormone therapies have limited effectiveness and a troubling side-effect history with discontinuation levels varying from 25 to 50% [16]. Because of this, women are likely to use self-care or lifestyle treatments as a way of their self-management strategies to either treat some of their symptoms and/or some of the side effects of the drugs used to control their endometriosis.

The use of self-management techniques in women with dysmenorrhea is extremely common [17]. There is evidence of the efficacy of self-management therapies or lifestyle measures in treating symptoms of endometriosis, including improvements in diet and yoga[18].

1.1. Significance of the Study

Endometriosis is a common gynecologic disease which affects daily lives of women’s, social activities and sexual relation. It was estimated that 176 million women globally are affected with endometriosis [19]. There was a critical need to enhance health-related quality of life for women's through improving awareness and ongoing education about successful endometriosis self-management. Thus, this study was conducted to improve quality of life among women with endometriosis.

1.2. Definition

Self-management was described as physical or psychological techniques which women were able to administer or perform themselves or lifestyle interventions (such as dietary changes) specifically designed to manage endometriosis symptoms. That include (diet, exercises, yoga, heat and cold compression, period of rest, massage, another complementary therapy.

1.3. Aim of the Current Study

The aim of the present study was to improve quality of life among women with endometriosis

1.4. Hypothesis

Educational sessions with the guidance on self-management strategies will improve women's quality of life and decrease the level of pain.

2. Subjects and Methods

2.1. Design of the Study

A quasi-experimental design was used in the present study.

2.2. Study Setting

The study was conducted at the outpatient clinic for obstetrics and gynecology at the University Hospital of Zagazig, Sharkia Governorate, Egypt.

The reasons given for choosing the above-mentioned setting because it considers the main government hospitals and receives large numbers of people, women attending with different socio-demographic characteristics for receiving high quality care from different regions in zagazig city.

2.3. Sample Type

The sample of the study consisted of a purposeful group of 60 women diagnosed with endometriosis, who attended in the above settings.

2.4. Sample Size

Assuming; Mean ±Sd score of QOL of intervention group at follow up phase was (42.17±3.78) and Mean ±Sd of QOL of control group was (45.16±3.56) according to [20]. Confidence level is 95% with power of study 80%. Sample size calculated using Open Epi, is 60 women divided into 30 women for each group.

2.5. Inclusion Criteria

Women aged between 18 and 45, diagnosed with endometriosis, women with various stages of endometriosis and able to participate in research.

2.6. Exclusion Criteria

Women with chronic illness, women with surgical treatment of endometriosis and psychological disease.

2.7. Tools of Data Collection

Four tools used to carry out this study; the researcher developed a structured Arabic-language interview questionnaire and was audited by highly qualified professionals. The interview was used to gather the data needed about the subjects of the study. It was constructed using simple language structures, keeping in mind each woman's educational level

Tool one: A structured interviewing questionnaire: it composed of five aspects:

(1): Socio-demographic characteristics of the studied females included age, level of education, place of residence, job and marital status.

(2): Obstetrics data, as gravidity and parity.

(3): Menstrual history (as age of menarche and cycle length and gynecological history (as Abnormal Uterine Bleeding, ovarian cysts and uterine fibroid).

(4): Endometriosis profile such as types, duration, and stage.

(5): Endometriosis-related symptoms such as dysmenorrhea, dyspareunia, dysuria and dyschesia

Tool two: Numerical rating scaleb (NRS): that adopted from [7] to measure the severity of pain symptoms associated with endometriosis. Women requested to describe the severity of current pain symptoms of endometriosis where, (0) show no pain and (10) indicate the worst possible pain.

Scoring system:

Total pain severity score was 10 percent. The responses of the patient ranged from one to ten and the total scores were classified into three categories: mild pain = 1-3, moderate pain = 4-6, and severe pain = > 7.

Tool three: endometriosis Health Profile Questionnaire-30 (EHP-30):

The EHP-30 has been adopted [21], the researchers have translated it to Arabic by to determine wellbeing quality of life of endometriosis female over last 4 weeks. The Core EHP-30 items applies to women suffering from endometriosis, which includes 30 items in five dimensions; pain (11 items), control and impotence (6 items), social support (4 items), emotional well-being (6 items), and self-image (3 items).

Scoring System:

EHP-30 is standardized on a scale of 0-100, where 0 reflects the better health condition to 100 the bad health status. Scores of each dimension are calculated from the total of the raw scores of each item in the scale divided by the maximum possible raw score of all the items in the scale, multiplied by 100

Tool four:

An Arabic Instructional Guideline about Self-management nursing instructions developed by the researchers supported by colored illustrated images and instructions about self-management techniques to decrease pain.

Validity :

It was established for face and content validity by a panel of five expertise in obstetrics and gynecological nursing, revising the tools for clarity, relevance, applicability, comprehensiveness, comprehension and ease of implementation and adding minor modifications according to their opinion.

Reliability:

Reliability was done by Cronbach's Alpha Coefficient Test which showed that each element of the tools used was relatively homogeneous.

Reliability of QOL questionnaire 0.96

Ethical Considerations:

An official permission was given by submission of an official letter from the Faculty of Nursing to the study setting's responsible authorities for obtaining their permission for data collection.

Ethical consideration:

During all phases of the study all ethical issues were taken into account; the research maintained anonymity and confidentiality of the subjects. The researcher introduced herself to the women and briefly explained the nature and purpose of the study to each woman before the participation and women were enrolled voluntarily after the oral informed consent process. Women were also told that the data collected during the analysis would be confidential and would only be used for research purposes.

A pilot study:

A pilot study was performed on a 10 per cent sample of cases (6 women). It was done to test the study tools in terms of clarity and feasibility, as the needed time to fill in the tools of the study and detect problems that might interfere with the data collection process. No modification was required, based on the results of the pilot study. Women had been included in the pilot study

Field of the work:

An official permission was given to the directors of Zagazig University Hospital from the Dean of the Faculty of Nursing, Zagaziguniversity to have approval for conduct of the study after clearing the purpose of the study. The researchers visit the study settings three days/week from 9.00 am to 1 pm. In order to achieve the current research goal, the following steps were taken to attain the current research goal: interviewing, preparation, implementation, and assessment. These phases covering seven months were carried out from the beginning of July2017 until the end of January2018.

I- Interviewing Phase:

The researcher interviewing the women who are eligible to participate in the research and have the inclusion criteria. At the beginning of the interview, the researchers welcomed each woman, explained the study's purpose, length, and activities and obtained informed oral acceptance. The researcher interviewed each woman separately in the outpatient clinic's waiting area before or after examination by an obstetrician. For further comparisons, the control and study groups filled out the pre-test questionnaires as basis data. The average number of women interviewed was 4-6 per week. For each woman, it took 25-30 minutes to complete the questionnaires.

II- Planning phase:

The researcher prepared the contents and methods in simple Arabic language based on the results of the interview phase to match the educational level of women according to the objectives and guidelines. Experts in the same field had checked it.

III-Implementation Phase :

First for the intervention group:

Intervention educational program took place in five instructional sessions; every one ranged from 30-40 minutes. The researchers started by reviewing the previous session and explaining the purpose of the new session at the beginning of each session. Various teaching materials as discussion, demonstration, and re-demonstration were used. Appropriate learning methods were used as; pictures, video, PowerPoint presentation, instructional model and a learning guide were prepared and disturbed for all participants.

I-First session:

The researcher provided information on endometriosis, such as definition, risk factors, pathophysiology and stages, sings and complications, diagnosis, endometriosis treatment, and surgical management as well as future follow-ups.

II-Second session:

In this session, the participants discussed how to cope with the disease and the non-pharmacological self-management strategies used to reduce pain symptoms related to endometriosis (dysmenorrhea, dyspareunia, dysuria, dysphasia and chronic pelvic pain) For example, regular rest naps, lower abdomen heat compresses and massage. More over discussing the benefits of continuous physical activities to relieve endometriosis symptoms which reduce oestrogen in the body. Instruct women to go through exercises three times a week, walking for 15-30 minutes.

III-Third session:

The study will provide advice on self-management strategies to reduce pain and improve quality of life, such as guidelines about balanced diets such as avoidance of dairy foods, red meat, refined sugars, caffeine and carbohydrates. Soy and other foods high in estrogen should also be omitted from diet. Take for example an anti-inflammatory diet including green leafy vegetables.

IV-Fourth session:

In order to help women cope with endometriosis related symptoms, the researcher offered women with endometriosis psychological support, encouraging them expressing the complaints and anxieties of treatment.

V-Fifth session:

Teach women different exercises to strengthen pelvic muscles to help them relieve pelvic pain as a Kegel exercise that helps the woman to relax the muscles of pelvic floor. And then, at the end of the sessions the participant had an educational booklet. Women were allowed to phone in and discuss any problems.

The control group:

Received standard care hospital focusing on diagnosis and management without receiving any details on endometriosis.

V-Evaluation Phase

The final test was done after of one month conducting the educational session, then follow-up was done after the next month the same pretest methods II and III were used. The one month period was selected as women were been in the same period of their menstrual cycle, which can be important for endometriosis concerns. A few people were evaluated through telephone. Started evaluation firstly by the control group then intervention group to prevent bias.

2.8. Statistical Analysis

All data were collected, tabulated and statistically analyzed using SPSS 20.0 for windows (SPSS Inc., Chicago, IL, USA). Quantitative data were expressed as the mean ± SD & median (range), and qualitative data were expressed as absolute frequencies (number) & relative frequencies (percentage). Continuous data were checked for normality by using Shapiro Walk test. Independent samples Student's t-test was used to compare between two groups of normally distributed variables while Mann Whitney U test was used for non- normally distributed variables. Friedman's test was used to compare between more than two dependent groups of non-normally distributed variables. Percent of categorical variables were compared using Chi-square test or Fisher's exact test when appropriate. All tests were two sided. p-value< 0.05 was considered statistically significant (S), and p-value ≥ 0.05 was considered statistically insignificant (NS).

3. Results

Table 1 shows that, there was no statistical significant differences regarding socio-demographic characteristics between both groups (p=0.59). The women have a mean age of 31.9±4.5 and 31.3±4.6 in the intervention and control groups respectively. As for women level of education, they mostly had educated, most of them were housewives and rural dwellers.

Table 2 revealed that short cycle (every 21 days apart) was reported in (16.7% vs. 30.0%) of women in intervention and control groups respectively. While long cycle (more than 34 days apart) was found in (43.3%vs.16.7%) of women in intervention and control groups respectively. Most of women in the intervention and control groups had complain of menstrual cramps and dysmenorrhea with no statistically significant differences (p>0.05). Regarding obstetrical history, there were no statistically significant differences (p>0.05) between the two groups regarding parity and number of abortion.

Table 3 shows that, there was no statistical significant differences regarding gynecological history between both groups (p>0.05). Abnormal uterine bleeding was reported in 16.7% of women in intervention group compared to 23.3% in control group. History of ovarian cyst and uterine fibroid were present in (36.7% vs. 26.7% & 16.7% vs. 30.0%) in the intervention and control groups respectively.

Table 4 demonstrates that, 60.0% of women in intervention group had chronic pelvic pain compared to 50.0% in control group. Dyspareunia was reported in 36.7% of women in intervention group compared to 46.7% in control group. There were no statistically significant differences observed (p>0.05). Regarding types of endometriosis, the most of women in intervention and control groups (80.0% vs. 86.7% respectively) had ovarian endometriosis with 73.3% vs. 66.7 in intervention and control group respectively had classified stage I. The mean duration of endometriosis of the intervention and control group was 2.3±1.2 vs. 2±1.03 years respectively.

Figure 1 illustrates that, there were decrease in NRS level after implementation of intervention program and at follow up phase in intervention group compared to control group which indicates decrease the level of pain in the intervention group.

Table 5 reveals that mean score of total EHP-30 showed impaired QoL before intervention program between intervention and control groups (69. 9±7.8 & 70.7±7.2 respectively) with no statistically significant differences observed (p=0.67). After implementation of intervention program and at follow up phase, the mean total score of EHP-30 was significantly decreased in the intervention group compared with the control group, that reflects improvement in quality of life in the intervention group.

Table 1. Distribution of studied women according to their socio-demographic characteristics (n=30 each group)

Table 2. Distribution of studied women according to their menstrual and obstetrical history (n=30 each group)

Table 3. Distribution of studied women according to their gynecological history (n=30 each group)

Table 4. Distribution of studied women according to the symptoms, types and stages of endometriosis. (n=30 each group)

Figure 1. Comparison between intervention and control groups regarding NRS level before, after implementation of intervention program and at follow up phase

Table 5. Comparison of mean score of EHP-30 between intervention and control groups before, after implementation of intervention program and at follow up phase (n=30 each group)

Table 6 points out that there were no statistically significant relations between the studied women's level of pain scale and their age, educational level, marital status, and occupation with р-value >0.05.

Table 6. Relation between the studied women's level of Pain Scale and socio-demographic characteristics for intervention group before, after intervention program and at follow up phase (n=30)

4. Discussion

It is popular to use self-management nursing instructions in chronic illnesses, especially non-pharmacological practices [15]. Women with endometriosis sometimes feel frustrated with the lack of appropriate medical treatments and therefore turn to self-management as one of the ways to cope with their condition [22]. Women with endometriosis frequently feel helpless and self-management approaches may help them feel a sense of agency and empowerment [23]. So this study aimed to improve quality of life among women with endometriosis

It can be noted that there have been no statistically significant differences according to the findings of the current study in socio-demographic characteristics between the two groups. The women in the intervention and control groups have a mean age of 31.9±4.5 and 31.3±4.6 respectively. This was congruent with [20] study in Egypt about the Effect of an Educational Intervention on Quality of Life and Sexual Function in Women with Endometriosis. They found that the mean age of the study and control groups was respectively 32.29 ± 2.58 and 31.54 ± 2.91years.

Furthermore, Nnoaham et al., in South Africa, reported that the mean age of women in their study were 33 years old [24]. Roomaney & Kagee [23] and previous research undertaken in Australia 31 years [9]. In disagreement with [25], founded that the mean age of study group was 28.51 ± 5.15 years. Additionally another study in Egypt by [26], reported a mean age of 37.3 years in women with endometriosis. Friedl et al., found that there is significantly difference in age between the studied groups [27].

The present study showed that most of the studied groups had educated, were housewives and rural dwellers. This was in accordance with [20], who reported that, women in both groups had educated, more than three quarters of two groups were rural residence and more than half of them were housewives with no statistically significant difference in demographic characteristics between the two groups. This reflects that the two groups were homogenous.

Regarding characteristics of menstrual cycle the present study, revealed that short cycle was reported in women of intervention than control groups while long cycle was found more in intervention than control groups. This in the same line with [28], who showed that associations have been identified between the diagnosis of endometriosis and the menstrual cycle characteristics, including menstrual cycle length and duration, as having a longer menstrual period and a shorter cycle length, these are risk factors for endometriosis.

There were no statistically significant differences between two groups regarding obstetrical history. This is matching with the study of [20], who showed that there were no statistically significant differences with respect to obstetrical data.

The present study showed that, there were no statistical significant differences regarding gynecological history between both groups. Less than one quarter of women in the intervention group registered irregular uterine bleeding, compared to nearly one quarter in the control group. Ovarian cyst and uterine fibroid were common in intervention group. This is corroborates with [29], who found women with endometriosis reported significantly higher ovarian cyst levels and irregular uterine bleeding.

The results of the current study demonstrated that, more than halve of women in intervention group had chronic pelvic pain. Dyspareunia was reported in more than one third of women in intervention group. This is agree with the study of [20], who demonstrated that mean intensity score of pain symptoms of endometriosis (chronic pelvic discomfort, dysmenorrhea, painful relation, dysuria and dyschezia) were comparable in two groups before providing of educational instructions. This also coincide with the study of [20], who pointed out that dysmenorrhea, chronic pelvic pain, dyspareunia and infertility are the most common symptoms of endometriosis in 30% of cases. Also, Touboul et al., illustrated that painful menstruation was the common severe complains [30]. Gupta et al., (2015) demonstrated that women with endometriosis reported painful intercourse is a common complaint [31].

Regarding types of endometriosis, the preset study revealed that, most of women in intervention and control groups had ovarian endometriosis that mostly classified stage I. There was no statistically difference in the mean duration of endometriosis between both groups.This is comparable to that reported by the study of[32],who found that 70.0% of the women had ovarian endometriosis. The mean endometriosis length of the studied women was 3.7 ± 0.95 years, with no significant difference in the history of obstetrics between the two groups and endometriosis data.

This research shows that, there were decrease in (numerical rating scale) NRS level after implementation of intervention program and at follow up phase in intervention group compared to control group which indicates decrease pain level in the intervention group. In this respect, EL Sayed & Aboud, founded that mean score of pain-related endometriosis symptoms significantly decreased in the study group compared to the control group after one month and two months of implementation of the instructional program [20]. This could be due to women interested with educational instruction components i.e a good diet, exercise, and non-pharmacological treatment techniques that help them gain information about how to respond to the symptoms of endometriosis. This outcome was in line with [9], who has found out that lifestyle modification as, exercise, diet and sleep are used to treat endometriosis. Additionally, Ghonemy and El Sharkawy, Have been shown that, significantly reduce of pain associated with endometriosis; average pain rating score before and three months after completion of an education about healthy[33].

The current study showed that mean score of total EHP-30 showed impaired QoL before intervention program between intervention and control groups. Nnoaham et al., upported those observations, who found that the quality of life of women with endometriosis was significantly reduced as opposed to other women with gynecological concerns[24]. Moreover, Bernuit et al., showed that 67 percent of the women surveyed indicated that endometriosis had a negative QoL effect [34]. Vercellin et al., recorded that half of women had dyspareunia with major QoL impact [35]. De Graaff et al. reported a decrease in the quality of life [36]. Equally, Stull et al., have indicated that the existence of symptomatic endometriosis affects social well-being physically, psychologically, and adversely affects the quality of life in relation to health [37]. Melis et al., stated that endometriosis women report considerably lower QoL and Self-image Similar to that of healthy control [38].

According to the present study findings, the mean total score of EHP-30 in the intervention group was significantly lowered compared with the control group after implementation of the intervention program and during the follow-up process, which indicates an improvement in the quality of life of the intervention group. Such significant differences occurred in EHP-30's five dimensions: pain, control and powerlessness, mental well-being, social support and self-image. This improvement can be due to the impact of successful self-management strategies and lifestyle improvements that play an important role in dealing with endometriosis and help women make educated choices about managing their debilitating symptoms and resolving them.

This was in agreement with [9], who stressed that lack of knowledge of the disease exacerbates the symptoms of endometriosis. Better understanding of the wide-ranging and long-term effect of endometriosis on the lives of women at different stages of life could be helpful in reducing the negative impact of endometriosis and enhancing the experiences of women in life. Thomas and Natarajan, stated that, dietary factors play an significant role in endometriosis prevention and development, and are useful as a way of treating women with endometriosis to improve their quality of life [39].

5. Conclusion

According to the findings of the present study, it can be concluded that designing and implementing an educational intervention program about endometriosis and self-management strategies had а significant effect with a remarkable improvement in the QoL of women and a decrease in the pain level.

6. Recommendations

● Women with endometriosis should be given Instructional booklets in order to raise understanding of self-management strategies to alleviate endometriosis-related pain symptoms.

● Greater focus on the direction of medical care and where women and girls may receive help with endometriosis and their support networks.

● Offer health education services to raise awareness among undiagnosed women about the signs of endometriosis in order to ensure early diagnosis of the disease.

Further research should be done concentrating specifically on how endometriosis patients ' quality of life is impacted and how healthcare professionals can help ensure that patients with endometriosis live a better life.

Acknowledgments

Researchers give their appreciation and gratitude to all women who visit obstetrics and gynecology outpatient clinic, Zagazige University Hospital and all thanks to the health team for their valuable support during the research.

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