© Borgis - Nowa Medycyna 1/2017, s. 5-17
*Joanna Chrobak-Bień1, Anna Gawor2, Małgorzata Paplaczyk3, Ewa Małecka-Panas4, Anita Gąsiorowska5
Effect of disease acceptance on the quality of life of patients with Crohn’s disease
Wpływ akceptacji choroby na jakość życia pacjentów z chorobą Leśniowskiego-Crohna
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 Internal and Environmental Nursing, Faculty of Health Sciences, Jagiellonian University, Collegium Medicum, Kraków
Head of Department: Professor Tomasz Brzostek, MD, PhD
3Doctoral Studies, Faculty of Health Sciences, Jagiellonian University, Collegium Medicum, Kraków, University Hospital in Kraków
Head of Faculty: Joanna Bonior, MD, PhD
4Department of Gastrointestinal Diseases, Medical University of Łódź, University Clinical Hospital No. 1 in Łódź
Head of Department: Professor Ewa Małecka-Panas, MD, PhD
5Department of Gastroenterology, Medical University of Łódź, University Clinical Hospital Military Memorial Medical Academy – Central Veterans’ Hospital
Head of Department: Professor Anita Gąsiorowska, MD, PhD
Streszczenie
Wstęp. Choroba Leśniowskiego-Crohna (ChLC) należy do grupy schorzeń przewlekłych i nadal niewyleczalnych. Przebiega z okresami zaostrzeń i częściowej lub pełnej remisji. Dotyczy głównie ludzi młodych. Szczyt zachorowań przypada pomiędzy 15. a 35. rokiem życia, niemniej możliwe jest wystąpienie pierwszych objawów choroby w każdym wieku. Ze względu na przewlekłość, nieuleczalność oraz możliwość powstania różnorodnych powikłań, choroba ta stanowi duże obciążenie zarówno psychiczno-fizyczne, jak i społeczne.
Cel pracy. Celem pracy było określenie stopnia akceptacji choroby oraz jej wpływu na jakość życia u pacjentów z ChLC.
Materiał i metody. W badaniu uczestniczyło 50 osób z rozpoznaną ChLC. Połowę badanej grupy (25 osób) stanowili pacjenci hospitalizowani w Klinice Chirurgii Ogólnej i Kolorektalnej Uniwersytetu Medycznego w Łodzi. Pozostałe 25 osób to pacjenci pozostający pod opieką specjalistyczną Poradni Gastroenterologicznej przy Uniwersyteckim Szpitalu Klinicznym nr 1 w Łodzi. Badanie przeprowadzono przy użyciu kwestionariusza SF-36v2, Skali Akceptacji Choroby (AIS) oraz ankiety autorskiej.
Wyniki. Badanie własne wykazało, iż zaakceptowanie choroby przez respondentów istotnie wpływa na jakość życia z tym przewlekłym schorzeniem. Pacjenci, którzy akceptują swoją chorobę, lepiej funkcjonują w sferze emocjonalnej, fizycznej i zawodowej.
Wnioski. Akceptacja choroby ma znaczący wpływ na jakość życia pacjentów z ChLC jako chorobą przewlekłą. Wyższy stopień akceptacji choroby podnosi jakość życia pacjentów w sferze psychicznej, społecznej i zawodowej.
Summary
Introduction. Crohn’s disease belongs to a group of chronic and still incurable diseases. It is characterised by periods of exacerbations and partial or complete remission. The disease usually affects younger people, with peak incidence among those between 15 and 35 years of age. However, symptom onset can be observed at any age. Crohn’s disease is a major psychophysical and social burden due to its chronicity, incurability and the possible risk of various complications.
Aim. The aim of the study was to determine the level of disease acceptance and its impact on the quality of life in patients with Crohn’s disease.
Material and methods. The study included 50 patients diagnosed with Crohn’s disease. Half of the study group (n = 25) were patients hospitalised in the General and Colorectal Surgery Department of the Medical University in Łódź. The remaining 25 patients were under the care of a specialist Gastroenterology Clinic at the University Clinical Hospital No. 1 in Łódź. The study used the SF-36v2 questionnaire, the Acceptance of Illness Scale (AIS) and the author’s questionnaire.
Results. Our study showed that acceptance of the disease by respondents had a significant impact on the quality of life with this chronic conditions. Patients who accept their disease have a better quality of life in the emotional, physical and professional contexts.
Conclusions. Acceptance of the disease has a significant impact on the quality of life of patients with Crohn’s disease as a chronic condition. Higher levels of disease acceptance improve the quality of patient’s life in psychological, social and professional contexts.
Introduction
Crohn’s disease (CD) belongs to a group of chronic and still incurable diseases. It is characterised by the presence of inflammation involving the entire wall of the bowel, which can occur in any part of the gastrointestinal tract. Patients experience periods of exacerbations and partial or complete remission. The disease mainly affects the inhabitants of highly developed European countries and North America. The lowest incidence rates are observed in Africa, South America and Asia. At present, the incidence of CD in EU countries is about 5 cases per 100,000 inhabitants annually (1). The etiopathogenesis of the disease has not yet been fully clarified. Genetic, environmental and immunological factors are considered the primary contributors. The disease usually affects young people, with peak incidence among those between 15 and 35 years of age. However, symptom onset can be observed at any age (2).
CD can occur in any part of the gastrointestinal tract, thus significantly reducing the quality of life as well as impairing patient’s functional efficiency. Crohn’s disease is a significant psychophysical and social burden due to its chronicity, incurability and the possible risk of various complications (3). Disease exacerbations exclude patients from daily work and home activities. Frequent hospitalisation due to exacerbations may lead to depression and, consequently, deterioration of patient’s clinical condition. Symptom alleviation to improve the quality of life in patients is the main treatment objective in chronic diseases. The quality of life is somewhat related to adaptation to the disease, i.e. adaptation to a new situation, which is essential for the future proper functioning of the affected individual (4, 5). Accepting a disease means a positive attitude towards a given situation or a view, which promotes the mobilisation of patient’s strength, as well as helps prevent a decrease in life quality caused by a chronic disease (6, 7). Everyone perceives their disease differently. Some people find it relatively easy to accept this condition. They accept the diagnosis and agree with it, whereas others cannot accept the fact of being affected by an illness. Those who accept their illness experience less negative emotions and participate in the therapeutic process more willingly (8). An assessment of the impact of disease acceptance on patients’ quality of life allows for appropriate measures aimed at enhancing the quality and intensity of care in the areas that are most affected.
Aim
The aim of the study was to determine the level of disease acceptance and its impact on the quality of life in patients with Crohn’s disease.
Material and methods
The study included 50 patients residing in the Łódź Province who were diagnosed with CD.
Half of the study group (n = 25) were patients hospitalised in the General and Colorectal Surgery Department of the Medical University in Łódź. The remaining 25 patients were under the care of a specialist Gastroenterology Clinic at the University Clinical Hospital No. 1 in Łódź. All respondents were informed that participation was voluntary and anonymous. The study began in July 2016 after receiving the consent of the Bioethics Committee of the Medical University of Łódź (RNN/177/16/KE, 14th July 2016) and ended in January 31, 2017. The research 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), the Acceptance of Illness Scale (AIS) and the author’s questionnaire.
Polish version of SF-36v2 (Student License Agreement QM035225-CT177402-OP052598) was used for life quality assessment. The SF36v2 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 (9, 10).
The Acceptance of Illness Scale (AIS) includes 8 statements regarding the negative consequences of poor health that relate to limitations resulting from the disease, self-sufficiency, self-esteem, pursuing one’s own interests and respondent’s perception of other people’s attitude to their disease.
The author’s questionnaire consisted of 22 questions on disease duration, clinical manifestations, complications, treatment history and demographic data.
The analysis of quantitative variables was performed by calculating the mean value, standard deviation (SD), median, quartiles, minimum and maximum values. The analysis of qualitative variables was performed by calculating the number and the percentage of occurrences of each value. Spearman correlation coefficient was used to examine the relationship between the data. The significance level of 0.05 was adopted for the analysis. Thus, all p-values < 0.05 were interpreted as statistically significant. The R program, version 3.3.2., was used for the analysis.
Results
The study included 25 women and 25 men. The mean age was 29.92 years for women and 27.28 years for men. The mean age for the total study group was 35.72 years (SD = 10.8). The youngest respondent was 20 years old, while the oldest respondent was 69 years old. Most respondents (90%) declared that they lived in urban areas. More than half of respondents (56%) had higher education, 36% had secondary education and 8% had vocational education. The vast majority of the study group (86%) were professionally active, 6% of respondents continued education, 6% received invalidity pension, and 1 respondent (2%) was retired. The mean disease duration was 5.92 years (SD = 4.59). The vast majority of respondents (94%) knew the negative impact of smoking on health and refrained from smoking cigarettes or tobacco products. A detailed characteristics of the study group is shown in table 1.
Tab. 1. Characteristics of the study group
Characteristic | n | % |
Gender | female | 25 | 50 |
male | 25 | 50 |
Place of residence | an urban area of up to 10,000 inhabitants | 2 | 4 |
an urban area of between 10,000 and 50,000 inhabitants | 10 | 20 |
an urban area of between 50,000 and 100,000 inhabitants | 4 | 8 |
an urban area of between 100,000 and 500,000 inhabitants | 7 | 14 |
an urban area of more than 500,000 inhabitants | 22 | 44 |
rural area | 5 | 10 |
Education | vocational | 4 | 8 |
secondary | 18 | 36 |
higher | 28 | 56 |
Marital status | unmarried | 17 | 34 |
married | 26 | 52 |
single | 7 | 14 |
Professional activity | professionally active | 43 | 86 |
student | 3 | 6 |
pensioner | 3 | 6 |
retired | 1 | 2 |
Smoking tobacco | smoker | 3 | 6 |
non-smoker | 47 | 94 |
Children | yes | 24 | 48 |
no* | 26 | 52 |
Family history of Crohn’s disease | yes | 11 | 22 |
no | 38 | 76 |
not sure | 1 | 2 |
Total number of patients: N = 50
*Including 21 respondents willing to have children in the future, 4 respondents avoiding procreation for fear of having children affected by the disease and 1 respondent who does not feel the need to have children
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