*Joanna Chrobak-Bień1, Anna Gawor2, Małgorzata Paplaczyk3, Ewa Małecka-Panas4, Anita Gąsiorowska5
Analysis of factors affecting the quality of life of patients with ulcerative colitis
Analiza czynników wpływających na jakość życia osób z wrzodziejącym zapaleniem jelita grubego
1Department of Gastrointestinal Diseases, University Clinical Hospital No. 1 in Łódź, Doctoral Studies, Faculty of Medicine, Medical University of Łódź
Head of Department: Professor Ewa Małecka-Panas, MD, PhD
2Department of Internist and Environmental Nursing, Collegium Medicum Jagiellonian University of Kraków
Head of Department: Professor Tomasz Brzostek, MD, PhD
3Doctoral studies, Faculty of Health Sciences, Collegium Medicum Jagiellonian University of Kraków
Head of Department: Joanna Bonior, MD, PhD
4Department of Gastrointestinal Diseases, Medical University of Łódź, University Teaching Hospital No. 1 in Łódź
Head of Department: Professor Ewa Małecka-Panas, MD, PhD
5Department of Gastroenterology, Medical University of Łódź, Military Medical Academy Memorial Teaching Hospital of the Medical University of Łódź
Head of Department: Professor Anita Gąsiorowska, MD, PhD
Streszczenie
Wstęp. Wrzodziejące zapalenie jelita grubego (WZJG) jest nieswoistym zapaleniem jelit o nieznanej etiologii. Charakteryzuje się występowaniem objawów ze strony przewodu pokarmowego oraz objawów ogólnych, które utrudniają codzienne funkcjonowanie chorym.
Cel pracy. Celem pracy było przeanalizowanie czynników, które mają wpływ na ocenę jakości życia u osób z WZJG.
Materiał i metody. Badanie przeprowadzono na grupie 50 pacjentów z wrzodziejącym zapaleniem jelita grubego leczonych w Klinice Chirurgii Ogólnej i Kolorektalnej Uniwersytetu Medycznego w Łodzi oraz będących pod opieką specjalistycznej Poradni Gastroenterologicznej przy Uniwersyteckim Szpitalu Klinicznym nr 1 w Łodzi. Badanie przeprowadzono metodą sondażu diagnostycznego, w którym wykorzystano wystandaryzowany kwestionariusz SF-36v2 oraz ankietę dotyczącą danych demograficzno-klinicznych.
Wyniki. Analiza wyników wykazała obniżony poziom jakości życia badanych, szczególnie w okresie zaostrzenia choroby. Respondenci nieco lepiej funkcjonowali w wymiarze fizycznym niż w wymiarze psychicznym. Młody wiek badanych oraz posiadanie wykształcenia wyższego znacząco wpływają na poprawę jakości życia.
Wnioski. Występowanie choroby przewlekłej przyczynia się do obniżenia jakości życia ankietowanych. Jakość życia mężczyzn i kobiet jest na podobnym poziomie. W czasie remisji choroby respondenci mieli lepszą jakość życia. Występujące przewlekle objawy jelitowe i pozajelitowe obniżają jakość życia pacjentów.
Summary
Introduction. Ulcerative colitis (UC) is a non-specific inflammatory bowel disease of unknown aetiology. It is characterised by the presence of gastrointestinal and general symptoms that affect the daily functioning of the patient.
Aim. The aim of the study was to analyse factors that influence the quality of life in patients with ulcerative colitis.
Material and methods. The study was conducted in a group of 50 patients with ulcerative colitis, treated in the Department of General and Colorectal Medical Surgery in Łódź, and remaining under the care of a specialist Gastroenterological Outpatient Clinic at the University Hospital No. 1 in Łódź. The study was conducted as a diagnostic survey using a standardised SF-36v2 questionnaire as well as a questionnaire regarding demographic and clinical data.
Results. Analysis of the obtained results showed reduced quality of life among respondents, especially during exacerbations. The respondents showed slightly lower mental functioning compared to physical functioning. The young age of respondents and higher education level significantly improve the quality of life.
Conclusions. Chronic disease contributed to decreased quality of life of respondents. The quality of life for men and women was at a similar level. The quality of life improved during disease remission. Chronic intestinal and extraintestinal symptoms reduce the quality of life of patients.
Introduction
Ulcerative colitis (UC) is a non-specific inflammatory bowel disease of unknown aetiology. It is characterised by diffuse, chronic and non-specific inflammation that may involve the entire colon, but is usually located in the rectum and the left colon (in total 80%); the inflammatory process is limited to the mucosa and superficial submucosal layers, and is characterised by continuity and ulcerations in some cases (1). The disease usually occurs in the form of acute exacerbations and remissions.
Although the etiopathogenesis of UC has not been fully explained, it is believed that the key role is played by immune events, particularly in genetically predisposed patients exposed to environmental factors. Although the disease occurs in all races and latitudes, it is more often diagnosed in Caucasians living in highly developed European and North American countries. The disease is least common in South America, Asia and Japan (2). The estimated incidence of UC in Europe is about 10 new cases per 100,000 population per year; and the epidemiological data in recent years indicate an increase in the incidence of this disease (3). Precise data on the epidemiology of UC is missing in Poland. It is estimated that the incidence is in the middle range of values. The disease usually affects young people, with the peak incidence between 20 and 40 years of age.
Once diagnosed, ulcerative colitis accompanies patients throughout their lives. Due to its chronic nature, the disease occurs with remissions and exacerbations, impeding everyday functioning, and thus decreasing the quality of life (4). Although the primary goal of medicine is to treat the underlying disease, modern medicine (21st century) also aims to improve the quality of life of patients. The World Health Organisation (WHO) defines the quality of life as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (5). As an incurable disease, UC can induce negative thoughts in patients, which may in turn lead to depression and, consequently, deteriorated clinical condition. In addition to basic clinical symptoms, emotional and psychological problems also significantly contribute to depressed mood in patients with UC. These problems may be due to the lack of knowledge about the disease. Obtaining information about the poor quality of life from UC patients may help better understand their everyday behaviours as well as show them different ways of coping in disease-related stressful situations.
The quality of life is associated with acceptance of disease and adaptation to a new life situation, which has significant effects on the further well-functioning of a person (6). Full acceptance of the disease means accepting the limitations imposed by the disease, including potential disability. Assessment of the quality of life in patients with chronic diseases, including UC, allows to learn about factors that have the greatest impact on this quality of life, and the obtained information may then be used to implement appropriate measures in order to improve the quality of patient care.
Aim
The aim of the study was to analyse factors that affect the quality of life among patients with UC.
Material and methods
A total of 50 patients diagnosed with UC and residing in the Łódź Province were included in the study group. Half of respondents (25) were hospitalised in the Department of General and Colorectal Medical Surgery of the Medical University in Łódź, and the other half (25) were patients remaining under the care of a specialist Gastroenterological Outpatient Clinic at the University Hospital No. 1 in Łódź. All respondents were informed (on the first page of the questionnaire) that the participation in the study was voluntary and anonymous. The study began in July 2016, after obtaining the approval of the Bioethical Commission of the Medical University of Łódź (RNN/177/16/KE dated June 14, 2016) and ended in January 31, 2017. The study was conducted in accordance with the principles of the Helsinki Declaration.
The study was conducted as a diagnostic survey using the SF-36v2 questionnaire (The Short Form (36) Health Survey, version 2) and the author’s questionnaire. Polish version of SF-36v2 (Student License Agreement QM035225-CT177402-OP052598) was used for life quality assessment. The questionnaire allows to comprehensively capture the subjective feelings of patients, while the licence, professional translation and standardisation additionally guarantee reliable results. The SF-36v2 questionnaire consists of 11 questions and allows for an assessment of life quality in the following domains: physical functioning (PF), role limitations due to physical problems (RP), bodily pain (BP), general health perception (GH), vitality (VT), social functioning (SF), mental health (MH), role limitation due to emotional problems (RE), health transition (HT). The above scales are grouped into two main categories: physical component summary (PCS), which includes: PF, RP, BP, GH and mental component summary (MCS), which includes: VT, SF, RE and MH – functioning in the mental dimension, total mental health (7, 8). The author’s questionnaire consisted of 22 questions on demographic data, disease duration, clinical manifestations, complications and treatment modes.
The analysis of quantitative variables (i.e. expressed in numbers) was performed by calculating the mean value, standard deviation (SD), median, quartiles, minimum and maximum values. The analysis of qualitative variables (i.e. not expressed by numbers) was performed by calculating the number and the percentage of instances of each value. The comparison of quantitative variables in two groups was performed using the Student’s t test (if the variable had a normal distribution in the analysed groups) or the Mann-Whitney U test (if the distribution was not normal). The comparison of quantitative variables in three or more groups was performed using the ANOVA (if the variable had a normal distribution in the analysed groups) or the Kruskal-Wallis test (if the distribution was not normal). If statistically significant differences were shown in the comparison, a post hoc analysis was conducted: using the HSD Tukey test (for normal distribution) or the Dunn’s test (in the absence of normality). The Shapiro-Wilk test was used to verify the normality of variable distribution. The significance level of 0.05 was adopted for the analysis. Thus, all p-values < 0.05 were interpreted as statistically significant. The R programme, version 3.3.2., was used for the analysis.
Results
Responses were obtained from all respondents in the full, planned scope of research. The results were statistically analysed, processed and presented in the form of tables and figures.
A total of 20 females and 30 males were included in the study. The mean age for the whole group was 38.82 (SD = 15.42) years. Mean age was 38.05 years for women and 39.33 years for men. The youngest respondent was 21 years old, and the oldest respondent was 76 years old. Most of respondents declared that they lived in urban areas (92%). More than half of respondents (52%) had higher education, 32% had secondary education, and vocational education was declared by 16%. The vast majority of the study group (56%) were professionally; active, 26% of respondents received invalidity pension due to the disease, 12% continued education, and 6% were retired. The shortest disease duration was 2 years, while the longest duration was 17 years. The vast majority of respondents (94%) knew the negative impact of smoking on health and refrained from smoking cigarettes or other tobacco products. A detailed characteristics of the study group is shown in table 1.
Tab. 1. Clinical characteristics of the study group
Characteristic | N | % |
Form of disease | Mild | 2 | 4 |
Remission | 20 | 40 |
Exacerbation | 28 | 56 |
The impact of the disease on the type of patient’ work | Yes | 11 | 22 |
No | 39 | 78 |
The need to change job due to disease | Yes | 11 | 22 |
No | 39 | 78 |
The impact of the disease on relationships with people | Very strong | 2 | 4 |
Strong | 7 | 14 |
Small | 15 | 30 |
None | 26 | 52 |
The negative impact of the disease on family relationships | Very strong | 0 | 0 |
Strong | 0 | 0 |
Small | 21 | 42 |
None | 29 | 58 |
Satisfaction with sex life | Very satisfied | 5 | 10 |
Satisfied | 22 | 44 |
Neither satisfied nor dissatisfied | 21 | 42 |
Dissatisfied | 2 | 4 |
Sources of knowledge about the disease* | Television, Internet | 33 | 66 |
Doctor, nurse | 50 | 100 |
Patient associations | 5 | 10 |
Books, press | 21 | 42 |
Other (studies, Internet) | 3 | 6 |
Membership in an association | Yes | 3 | 6 |
No | 47 | 94 |
Pharmacotherapy* | Sulfasalazine | 9 | 18 |
Mesalazine | 34 | 68 |
Encorton | 18 | 36 |
Metypred | 5 | 10 |
Cortiment | 9 | 18 |
Budenofalk | 3 | 6 |
Infliximab | 6 | 12 |
Adalimumab | 8 | 16 |
Clinical manifestations* | Perianal fistula | 6 | 12 |
Internal fistula | 4 | 8 |
Anal fissure | 4 | 8 |
Abscess | 9 | 18 |
Intestinal stenosis | 16 | 32 |
Anaemia | 16 | 32 |
Skin lesions | 11 | 22 |
Arthritis | 11 | 22 |
Iritis | 4 | 8 |
None of the above | 15 | 30 |
Surgeries due to disease | None | 21 | 42 |
1x | 9 | 18 |
2x | 10 | 20 |
3x | 3 | 6 |
No answer | 7 | 14 |
Type of surgery* | Small bowel resection | 4 | 8 |
Large bowel resection | 16 | 32 |
Abscess | 11 | 22 |
Inflammatory abdominal tumour | 2 | 4 |
Fistula | 6 | 12 |
Other (ileostomy) | 3 | 6 |
The total number of patients: N = 50
*Since it was possible to select more than one answer to the question, the percentages do not add up to 100.
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