PUlcerative Colitis: Effect of a Nursing Educational Booklet on the Severity of Disease and Patients’ Quality of Life
Wafaa Ramadan Ahmed 1, Amna Abdullah Desouky 2& Zain Al-Abdeen Ahmed Sayed 3
1 & 2 Lecturer of Medical-Surgical Nursing, Faculty of Nursing, Assiut University
3 Assistant professor of Internal Medicine, Faculty of Medicine, Assiut University
Corresponding Author: Wafaa Ramadan Ahmed
Wafaa_ramadan27@yahoo.com
Abstract:
Background: Quality of life (QoL) is most critical issue to chronic illnesses patients with ulcerative colitis (UC). Aim: to evaluate the effect of a nursing educational booklet on the severity of disease and quality of life for patients with ulcerative colitis in El Rajhi liver Hospital at Assiut University. Design; A quiz experimental research design was utilized to carry out his study. Setting: The study was conducted in tropical Medicine and Gastroenterology department and outpatient clinic at El Rajhi liver Hospital at Assiut University. Subjects: Random sample of adult patients (60), male and female, their age ranging from 18 – 65 years old. The sample was categorized to two equal groups, 30 patients for study group who were received a nursing educational booklet in addition to the routine care and 30 patients for control group who were received a routine hospital care. Tools: tool I: Interview Questionnaire Sheet which includes three parts (patient assessment, Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale, and partial Mayo scoring index assessment for ulcerative colitis activity) and tool II: A nursing educational booklet. Results; There was agreat progress in the mean score of the Quality of Life Questionnaire in the study group (47.6±2.43) than those patients in the control group (27.87±5.78) with a statistical significant difference (<0.001**). One quarter of patients in the study group were complaining from severe disease stage compared to half of patients in the control group, and there was a negative correlation between Quality of Life Questionnaire scores and the severity of disease between study and control groups of patients which means as the severity of the disease decreased the quality of life score increased. Conclusion; Providing a written nursing educational booklet had a great value in improving the quality of life and decreasing the disease severity for patients in the study group than those patients in the control group. Recommendations; Distribution of the booklet for all patients diagnosed with ulcerative colitis.
Key words: Ulcerative colitis, Educational booklet, & Quality of life.
Introduction
Inflammatory bowel disease (IBD) is defined as an idiopathic disorder resulting from a dysregulation of the immune reaction to host intestinal microflora. IBD involves two major forms of which are ulcerative colitis (UC), which is limited to the colonic mucosa, and Crohn’s disease (CD), that has an effect on any section of the intestine from the mouth to the anus, not limited to mucosa but involves all layers of the intestinal wall; mucosa, Sub mucosa, Muscular layer, and Serosa . There are may be genetic predispositions for IBD, and patients with this condition are more vulnerable to the development of malignancy (Rowe, 2015).
Ulcerative colitis (UC) is a persistent idiopathic inflammatory bowel disorder characterized by means of continual mucosal inflammation that start inside the rectum and extends proximally. Standardized symptoms include bloody diarrhea, abdominal ache, urgency, and tenesmus. In few cases, extra intestinal manifestations may be present properly (Feuerstein and Cheifetz, 2014). The medical path is marked by means of exacerbations and remissions, which may occur spontaneously or in reaction to treatment changes or happening during the progress of other sickness. (Kombluth, et al, 2010).
Ulcerative colitis is associated with some of extra intestinal manifestations that could typically have an effect on the skin, joints, eyes, and liver. Erythema nodosum and pyoderma gangrenosum are the two most common immunologic pores and skin lesions. Erythema nodosum follows the activity of the luminal disorder, while pyoderma gangrenosum is more often independent (Ford, et al, 2013).
Globally, UC is commonest than Crohn’s disease. Both diseases are more common in the industrialized communities, particularly North America and Western Europe, although the incidence is increasing in Asia. The overall incidence is reported as 1.2 to twenty cases per hundred thousand persons per year, with a prevalence of 7.6 to 245 cases per hundred thousand per year (Danese and Fiocchi, 2011).
The aims of treatment of UC are to induce and keep maintaining remission of disease. Effective management includes drug therapy, focusing to nutrition and, in severe or chronically active disease, and surgical procedure. Management should involve a multidisciplinary team (MDT), including specialist physicians and surgeons experienced in the management of UC, specialist IBD nurses, pharmacists and nutritionists as appropriate (Dignass and Lindsay ,2012).
Patients normally require regular surveillance to assess their disease activity and to check for the development of complications and/or extra-intestinal manifestations, which may necessitate adjustment of their individual management plan. Colonic surveillance will be required for those with significant colonic involvement and disease duration of 6 to 8 years. Patients and their families require ongoing education and psychosocial support and they should be encouraged to take part actively of their medical decisions (National Institute for health and Clinical Excellence, 2015).
There are numerous definitions of quality of life (QoL), extra or much less efficaciously reflecting its meaning. The different definitions probably displays the complexity of the issue, which has many dimensions, depending on the perspective from which the subject is being examined and its axiology. A conceptual understanding of the term QoL is likewise crucial here – using the following synonyms: happiness, well-being, and contentment, good and fulfilled life. A WHO Committee described QoL as “the individual's perceptions within the context of their lifestyle and value systems, and their personal goals, requirements, and issues” (Papuć, 2011).
Significance of the study:
In keeping with epidemiological data, the superiority of UC has improved in latest years. The disorder affects especially younger humans, and the peak prevalence is between the ages of twenty and forty. In European population, ten out of a hundred, thousand humans annually were complaining from UC (Eder, et al, 2013). Ulcerative colitis causes physical and psychosocial outcomes that can affect the health associated quality of life. Ulcerative Colitis generally begins in young adulthood and due to its remitting and relapsing pattern, UC places a heavy burden on patient populations, resulting in reduced quality of life, reduced capacity for work and potentially increasing disability.
Aim of the study:
To evaluate the effect of a nursing educational booklet on the severity of disease and quality of life for patients with ulcerative colitis in El Rajhi liver Hospital at Assiut University.
Research hypotheses:
Ulcerative colitis patients who will receive a nursing educational booklet their quality of life will be significantly improved and their disease will be decreased in severity than those who will not receive a nursing educational booklet.
Research design:
A quiz experimental research design was used to carry out this study.
Setting:
The research study has been conducted in tropical Medicine and Gastroenterology department and outpatient clinic at El Rajhi liver Hospital at Assiut University.
Study Sample:
A random sample of adult patients (60), male and female, their age ranged from eighteen to sixty five years old. The sample was categorized into two equal groups, 30 patients for study group who were received a nursing educational booklet in addition to the routine care and 30 patients for control group who were received a routine hospital care.
Tools of the study:
Tool 1: Interview Questionnaire Sheet: to assess the patient’s sociodemographic data, medical health history, and quality of life, it included three parts:
Part 1: Patient assessment: This includes (socio demographic data, past and present health history which include associated chronic diseases, health habits, previous family member history of the disease, and the disease duration).
Part II: Short Quality of Life Questionnaire for Inflammatory Bowel Disease scale: This tool was developed by (Irvine, 1996); to assess how patients had been feeling over the past two weeks. It is a disorder-specific, established and dependable device for measuring health related quality of life in grownup patients with IBD and consists of ten questions. For every question, there are graded responses on a seven-point Likert scale ranging from one (representing the ‘‘worst’’ element) to seven (representing the ‘‘best’’ aspect). Total IBD questionnaire (IBDQ) rankings range from ten to seventy, with higher rankings reflecting higher well-being.
Patient was asked about signs and symptoms they have been having as a result of the inflammatory bowel disease as fatigue, tiredness, abdominal pain, and weight loss. Also asked about social engagement, difficulty of doing leisure or sport activities, the way patient have been feeling in general, and how patient’s mood has been. It was categorized to four domains; bowel domain (Q four, six, nine), social domain (Q two, three), emotional domain (Q five, eight, ten), and systemic domain (Q one, seven).
Part III: Partial Mayo scoring index assessment for ulcerative colitis Activity:
The clinical Mayo Score or partial Mayo Score (PMS) developed by (Rutgers, et al, 2005), used as outcome measures for scientific trials assessing therapy for ulcerative colitis. It uses the three non-invasive components of the full Mayo Score (stool frequency, rectal bleeding and Physician’s global assessment). This excludes the score for the endoscopic findings; therefore the maximum score is reduced from 12 to 9 points. This simplified index maintains a good relationship with the full Mayo Score in identifying clinical response as perceived by patients.
Scoring system:
The index considers three clinical parameters, each of which is assigned a score from 0 to 3 according to the clinical evaluation. Calculation formula: sum the scores of the three parameters. Clinical response is defined as a decrease of at least two points of the Mayo Clinical Score. Total score can be categorized to Remission = zero to one, Mild Disease = two to four, Moderate Disease = five to six, and Severe Disease =seven to nine.
Tool 2: A nursing educational booklet: The nursing educational booklet was designed by the researchers according to literature review, researchers’ experience, and the opinions of medical and nursing expertise. It was formulated and introduced to the patients in the form of sessions. It was written in a simple Arabic language with clear illustrations and figures. The nursing educational booklet included the information about:( colon anatomy and function in brief, definition of ulcerative colitis , causes, risk factors, signs and symptoms, complications, diagnosis, investigations, and management which include (medications, nutritional guidelines such as, allowable foods for the patient with ulcerative colitis, foods that should be reduced, foods that avoided or refrained from eating by ulcerative colitis patients, exercises that allowed for practicing, and general nursing instructions as the substances that causes symptoms of diarrhea, pain, and gases should be reduced, Meals should be dividing into five or six small meals, Drink plenty of fluids and water, Consult your doctor when taking vitamins in tablet form, because ulcerative colitis reduces the absorption of certain minerals and vitamins, and Stay away from any tension or stressful situations).
Content validity and reliability:
a. For validity assurance purpose, the tools had been submitted to a panel of 5 experts in fields of medicine and nursing who reviewed the tools for clarity, relevance, comprehensiveness, understanding, applicability, and the ability for application, minor modifications had been done.
b. Reliability of the tool I (part II and part III) was performed and calculated statistically. The Cronbach’s values were measured for part II (Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale) was (Α = 0.992), and part III (partial Mayo scoring index assessment for ulcerative colitis) was (Α=0.956).
Pilot study:
The pilot study executed on ten percent of patients (six patients) to test the study tools for clarity, applicability and time consumed. Some items have been changed in keeping with patients’ responses during the pilot study and excluded from the study subject.
Field work:
The field work was performed over a period of 9 months from February to October 2017.
Assessment Phase:
Tools have been designed by the researchers after a reviewing of past and current, local and international literature using books, articles, periodicals and magazines to identify the different aspects of the research problem. At the initial interview, the researchers introduced themselves to provoke line of verbal exchange, gave an explanation for the character and aim of the study.
Implementation Phase:
a. Patients are randomly categorized into two groups; study and control groups, thirty patients for each.
b. The 1st group (30 patients) received routine nursing care, (there is no any participation from the researchers for teaching them and they considered as a control group).
c. The 2nd group of patients received nursing educational booklet (Tool II); each patient received the instructions in two sessions. Each session consumed fifteen to thirty minutes. After each session there was five to ten minutes for discussion and gave feedback. Reinforcement of teaching has been accomplished according to patient's needs to ensure their understanding. Each patient in the group can get a copy of the teaching booklet; the researcher used pictures for illustration, diagram to teach the patients.
d. Each patient was interviewed individually by the researchers. The average time taken for filling the sheet was around 15 – 20 minutes depending on the response of patients.
e. The researchers answer any questions and gave feedback. Communication channel was kept open between the researchers and the patients.
Evaluation Phase:
Evaluation has been done 8 weeks following completing the implementation of the educational sessions by interviewing the patients in tropical Medicine and Gastroenterology outpatient clinic at El Rajhi liver Hospital at Assiut University, and by contacting patients by telephone.
Administrative and Ethical Considerations:
An official letter has been acquired from the head of tropical Medicine and Gastroenterology department and outpatient clinic at El Rajhi liver Hospital at Assiut University in order to get permission to conduct the study. Oral consent was taken from patients who were agreeing to participate after reassuring them about the confidentiality and the information will be used for the purposeful research. The researchers gave clear and simple rationalization of the study nature, the study was voluntary and harmless. The patient had the full right to refuse to participate or withdraw at any point of the study.
Statistical Design:
The data were tested for normality using the Anderson-Darling test and for homogeneity variances prior to further statistical analysis. Categorical variables were described by number and percent (N, %), where continuous variables described by mean and standard deviation (Mean, SD). Chi-square test and fisher exact test used to compare between categorical variables where compare between continuous variables by t-test and ANOVA TEST. A two-tailed p < 0.05 was considered statistically significant. We are used person Correlation to Appear the Association between scores. All analyses were performed with the IBM SPSS 20.0 software.
Results:
Table (1):- Frequency distribution of Socio demographic data of studied sample (control and study groups of patients) n. (60) :
Socio demographic data Control Study P.value
n. (30) % n. (30) %
Age 40.23±12.11 37.30±10.57 0.322
Sex
Male 16 53.3 9 30.0 0.067
Female 14 46.7 21 70.0
Marital status
Single 4 13.3 7 23.3 0.317
Married 26 86.7 23 76.7
Educational level
Illiterate 10 33.3 7 23.3 0.365
Reading and writing 0 0.0 1 3.3
Primary school 1 3.3 5 16.7
Secondary school 12 40.0 11 36.7
University 7 23.3 6 20.0
Occupation
Non working 8 26.7 7 23.3 0.574
Farmer 5 16.7 3 10.0
employed 10 33.3 6 20.0
skilled worker 5 16.7 10 33.3
student 2 6.7 4 13.3
– Independent T- test. Chi-square test
Table (1): showed that, more than half of patients in the control group were males, while more than two thirds of patients in the study group were females, the majority of patients in both control and study groups were married with mean age (40.23±12.11, and 37.30±10.57) respectively. More than one third in both study and control groups had obtained a secondary school education, Mean while, one third of patients in control group were employed and skilled workers in the study group. Finally, there was no statistical significant difference between the study and control groups regarding socio demographic data.
Table (2):- Frequency distribution of past and current health history of studied patients:
past and current health history Control Study P.value
n. (30) % n. (30) %
Signs and symptoms:
Rectal bleeding 12 40.0 6 20.0 0.091
Bloody diarrhea 30 100.0 29 96.7 0.313
Abdominal pain 29 96.7 25 83.3 0.085
Urgency 1 3.3 2 6.7 0.554
Tenesmus 10 33.3 7 23.3 0.390
Weight loss 16 53.3 16 53.3 1.000
Fatigue 18 60.0 15 50.0 0.436
Tiredness 10 33.3 7 23.3 0.390
Fever 3 10.0 1 3.3 0.301
Anemia 9 30.0 5 16.7 0.222
Chronic diseases:
Hypertension 13 43.3 11 36.7 0.071
Diabetes mellitus 3 10.0 8 26.7 0.095
Liver disease – – – – –
Renal disease – – – – –
Smoking:
Yes 12 40.0 11 36.7 0.301
No 18 60.0 19 63.3
Dietary habits:
Spicy 9 30.0 16 53.3 0.104
Fatty 17 56.7 9 30.0
Fried 4 13.3 5 16.7
Use of tea and coffee: 30 100.0 30 100.0 –
Disease duration in years:
from 1 to less than 3 years 16 53.3 16 53.3 0.747
from 3 to 5 years 7 23.3 9 30.0
more than 5 years 7 23.3 5 16.7
F. Previous family member history of the disease:
Yes 11 36.7 15 50.0 0.080
No 19 63.3 15 50.0
Table (2): illustrated that, the majority of patients in the control and study groups were complaining from bloody diarrhea and abdominal pain. Also, more than half of patients in both control and study groups were suffering from fatigue (60.0 and 50.0 %) and weight loss (53.3 and 53.3 %) respectively. Additionally, more than one third of patients in study and control groups were smokers and diagnosed with hypertension, All patients in both study and control groups drink tea and coffee, and more than half of patients in both groups have diagnosed with ulcerative colitis since one to less than three years. More than half of patients in the control group (56.7%) like fatty foods, while the study group like spicy foods with (53.3%). Finally, there was no statistical significant difference between the study and control groups regarding medical data, and health assessment.
Table (3):- Comparison between study and control groups of patients according to domains scores of Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale:
IBDQ scale Control Study P.value
Bowel domain 8.4±2.22 14.2±1.16 <0.001**
Social domain 5.5±1.48 9.6±0.89 <0.001**
Emotional domain 8.07±1.48 14.73±0.58 <0.001**
Systemic domain 5.9±1.3 9.07±0.74 <0.001**
IBDQ total score 27.87±5.78 47.6±2.43 <0.001**
– Independent T- test, ** Significant difference at p. value<0.01
Table (3): clarified that, there were a statistical significant differences between study and control groups of patients regarding domains scores of the Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale, which means that; there was a progress in the quality of life for patients in the study group than those patients in the control group.
Table (4):- Comparison between study and control groups of patients according to partial Mayo scoring index assessment for ulcerative colitis activity:
Disease activity Control Study P.value
N. (30) % N. (30) %
Mild Disease 3 10.0 12 40.0 <0.001**
Moderate Disease 12 40.0 10 33.3
Severe Disease 15 50.0 8 26.7
Mean±SD 6.43±1.36 2.50±0.73 <0.001***
– Chi-square test, ** Significant difference at p. value<0.01
– Independent T- test, ** Significant difference at p. value<0.01
Table (4): illustrated that, there was a statistical significant difference between study and control groups of patients regarding partial Mayo scoring index assessment for ulcerative colitis; half of patients in the control group were categorized as having severe stage of disease, after implementing the educational booklet and nursing instructions, this percentage was decreased to reach nearly one quarter of patients in the study group with (26.7%), Also only ten percent of patients in the control group was categorized as having a mild stage of disease, while, this percent increased to became forty at the study group of patient, which was considered as agreat results in decreasing the disease activity.
Figure (1):- Correlation between Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale scores and partial Mayo scoring index assessment for ulcerative colitis in study and control groups of patients:
Figure (1): showed that, there was a negative correlation between Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale scores and partial Mayo scoring index assessment for ulcerative colitis in study and control groups of patients, which means as the severity of the disease decreased the quality of life score increased.
Discussion:
Ulcerative colitis (UC) is a persistent inflammatory disease of the colon characterized by ulceration un the intestinal mucosa, bleeding per rectum, diarrhea and abdominal pain. UC Patients experience enormous impairment in health-related quality of life (HRQL) in comparison to the other people (Feagan, et al, 2007). The current study aimed to evaluate the effect of a nursing educational booklet on the quality of life and disease activity for patients with ulcerative colitis in El Rajhi liver Hospital at Assiut University.
The current study results revealed that, nearly half of patients in the control group and more than two thirds of patients in the study group were females, the majority of patients at both study and control group were married with mean age (40.23±12.11, and 37.30±10.57) for the control and study group respectively. (Meijs, et al, 2014) were agreeing with our study results as they revealed that” sixty patients were included, thirty patients in both groups, The majority of patients completed the questionnaires: twenty nine patients in the surgery group (median age was 42 years; nearly half of them were female) and twenty nine patients in the medical group (median age was 45 years; more than half of them were female)”. Additionally, depending on the researchers opinions, being a female is consider one of the greatest risk factor for developing ulcerative colitis especially at our community as women are more stressful, and nervous because of every day family demanding, and responsibilities required from them.
Also, (Yarlas, et al, 2018) were agreeing with the prevailing study results as they mentioned that “ More than halfe of patients in both Induction Sample and Maintenance Subset , were females and the mean age for patients in the first and second groups were (42.9± 14.0, and42.7±14.2) respectively. These effects are similar to previous study achieved using the General Practice Research Database which showed that the greatest ratio of hazards for patients diagnosed with ulcerative colitis were between patients aged forty to sixty five years old (Card, et al, 2013). But, (Mahalli, and Alharthi, 2017), were disagreeing with our results as they reported that” The results of fifty sequential non-selected patients attending the teaching hospital diagnosed with UC showed that the mean age of the patients was 29.96 ± 13.53. Forty-four percent of the patients were aged twenty to less than thirty, and more than half of them were males”.
The majority of patients in the control and study groups were complaining from bloody diarrhea and abdominal pain. Also, more than half of patients in both study and control groups were suffering from fatigue and weight loss. (Feuerstein, and Cheifetz, 2014) was agreeing with our study results as they reported that” Typically, UC markedly with bloody diarrhea, abdominal pain, urgency, and tenesmus. Hardly, patients may additionally present with weight loss or other systemic symptoms, such as a low- grade fever. The disorder classically begins gradually and continues for many weeks”.
All patients in both groups drink tea and coffee, and more than half of patients in both groups have been diagnosed with ulcerative colitis since one to less than three years. More than half of patients in the control group like fatty foods, while the study group prefers spicy foods. (Ananthakrishnan , et al, 2014) were agreeing with our study results as they showed that “women who ate a diet high in trans fats, such as the hydrogenated oils found in processed foods, had a higher risk of ulcerative colitis”. Additionally, (Owczarek, et al, 2016) confirmed our study results as they reported in a research published in the World Journal of Gastroenterology that” A red-hot spicy meal can send anyone to the bathroom for emergency relief, especially people with ulcerative colitis. Doctors recommend using only mild spices to avoid irritating the digestive tract. During an active flare it’s best to avoid spices altogether”
There was an obvious progress in the quality of life for patients in the study group than those patients in the control group as there was a great significant distinction among study and control groups of patients according to the Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale scores of (Bowel, Social, Emotional, and Systemic) domains. (Mahalli, and Alharthi, 2017), were agreeing with our study results as they mentioned that “patients diagnosed with Inflammatory bowel disease have been experienced decline in the quality of life with physical, social and emotional dysfunction”. (De Souza, et al, 2011) who performed a study to assess Quality of life of patients with inflammatory bowel disease, they reported that” Measures to promote and prevent outbreaks should be introduced as well as the psychological, social and educational support should be considered to improve their care and to keep and /or improve QL of people with UC”.
Regarding the severity of the disease; there was a surprising significant distinction among study and control groups of patients regarding partial Mayo scoring index assessment for ulcerative colitis, which means that; one quarter of patients in the study group were complaining from severe disease stage compared to half of patients in the control group, also, only three patients in the control group were complaining from mild degree of the disease were increased to become twelve patients in the study group. According to the researchers’ opinion, it was strongly expected as the patients knowledge increase about the importance of commitment to medications intake especially corticosteroids, avoiding or minimizing specific foods that can trigger or increase the severity of the disease, and encouraging patients about eating special foods that can decrease or minimize the disease symptoms, all of these factors can affect on the severity of the disease.
There was a negative correlation between Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale scores and partial Mayo scoring index assessment for ulcerative colitis in study and control groups of patients, which means as the severity of the disease decreased, the quality of life score increased. (Kalafateli, et al, 2013) were agreeing with the current study results as they mentioned that” We confirmed a strong effect of disease activity on HRQoL in IBD patients, regardless of the type of disease. Patients with active disease experience a lower emotional and social dysfunction compared to patients in remission who have a greater perception of life”.
Conclusion:
Nearly half of patients in the control group and more than two thirds of patients in the study group were females, the majority of patients at both study and control group were married with mean age (40.23±12.11, and 37.30±10.57) for the control and study group respectively. One quarter of patients in the study group were complaining from severe disease stage compared to half of patients in the control group, also, only three patients in the control group were complaining from mild degree of the disease were increased to become twelve patients in the study group. There was an obvious progress in the quality of life for patients in the study group than those patients in the control group, There was a negative correlation between Short Quality of Life Questionnaire for Inflammatory Bowel Disease Scale scores and partial Mayo scoring index assessment for ulcerative colitis in study and control groups of patients, which means as the severity of the disease decreased, the quality of life increased.
Recommendations:
Continuous monitoring of ulcerative colitis patients’ disease activity and their quality of life as they affect the patients’ capacity for work and productivity, it is suggested to be a hospital policy.
Distribution of the nursing educational booklet for all patients diagnosed with ulcerative colitis.
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