Self-Care, Disease Activity and Health-Related Quality of Life Among Patients with Inflammatory Bowel Disease

Introduction: Self-care is needed for patients living with inflammatory bowel disease so that they can manage symptoms in the context of activities of daily living. The objective was to explore self-care in relation to disease activity and health-related quality of life in patients with inflammatory bowel disease. Methods: We used a cross-sectional exploratory design and a total of 234 patients with inflammatory bowel disease participated. Disease specific measurements was used as, a newly developed selfcare questionnaire, Harvey Bradshaw Index, the Simple Clinical Colitis Activity Index and Short Health Scale. Results: The results revealed that patients reported a high frequency of self-care maintenance as medication adherence, diet adaptation, planning the day and Arch Clin Biomed Res 2020; 4 (6): 674-690 DOI: 10.26502/acbr.50170133 Archives of Clinical and Biomedical Research Vol. 4 No. 6 – December 2020. [ISSN 2572-9292]. 675 avoiding activities, self-care monitoring in symptom recognition and self-care management in managing stress and managing sleep. Higher disease activity was related to higher self-care activity. Compared to patients with ulcerative colitis, those with Crohn’s disease planned their day to a higher degree when their bowel symptoms interfered with daily life. Disease activity and avoiding activities decreased their healthrelated quality of life. Conclusion: Self-care was positively associated to higher disease activity. Higher disease activity highlight self-care maintenance as planning the day and avoiding activities in daily life what in turn decrease health-related quality of life. Regular discussions on symptoms in relation to self-care is of great importance for patients to adjust their daily activities.


Introduction
Crohn's disease and ulcerative colitis are chronic Inflammatory Bowel Diseases (IBD) that most often have an early onset in life, between 15 and 35 years of age. In the last decades, the incidence and prevalence of IBD has increased worldwide, and approximately three million people in European countries live with these conditions [1]. For these patients, the disease activity and severity vary but for some patients the symptoms are debilitating, such as abdominal pain and bloody diarrhea, causing lifelong need for healthcare and contacts with healthcare professionals. The symptoms affect functioning in daily life and perceived health-related quality of life. Worries and concerns can influence this perception [2].
Ulcerative colitis affects the rectum and to various degree the colon, whereas Crohn's disease may involve any part of the gastrointestinal tract, although it in 90% of the cases affects rectum, colon or the distal ileum. The diseases are heterogenous in their clinical presentation depending on the degree of disease activity, extent and location of bowel inflammation and presence of intestinal complications or extraintestinal manifestations [3,4].
Commonly experienced symptoms with IBD that need to be managed are both physical and psychological.
Most gastrointestinal symptoms are quite unpleasant and include abdominal cramps, abdominal pain, diarrhea, urgency, fever and fatigue [5]. Extraintestinal manifestations are frequently in patients with IBD, occurring in up to 50% [6]. The most frequent extra-intestinal complications are musculoskeletal, including arthritis and osteoporosis; dermatologic, such as erythema nodosum or pyoderma gangrenosum; and ocular as uveitis or episcleritis [3]. The disease course varies between individuals, but usually periods in remission are interrupted by flare-ups unless maintenance treatment can control the disease [4].
The symptoms from IBD and associated manifestations has the greatest influence on healthrelated quality of life since they negatively influence performance and participation in daily activities [7,8].
Mood disorders such as depression, anxiety, and worry are common, with an incidence of 18.6%-40% among patients with IBD in both relapse and remission [9,10]. Patients with IBD who are in remission experience a much better health-related quality of life than patients with active disease, and in fact like a background population [11]. Induction of remission should therefore be the mainstay of care regarding improvement of health-related quality of life [12,13].
To achieve this, many patients with IBD are motivated to care for themselves and patients with chronic illness benefit from engaging in activities of self-care in partnership with their IBD team [14].
In this study, self-care in daily life refers to an active process performed by a person living with a chronic disease to maintain and promote health [15].
The middle-range theory specifies that self-care involves three separate, linked concepts. Key concepts in the self-care process are self-care maintenance, selfcare monitoring and self-care management. Self-care maintenance refer to positive health practices that help patients adhere to treatment and maintain health (e.g., taking medications and adapting their diet). These behaviors are either self-determined or advocated by the healthcare professionals. Self-care monitoring, is the process of paying attention to one's bodily functions and symptoms, including detecting and interpreting with the intention of recognizing changes that have occurred. Self-care management, involves an evaluation of changes in physical and emotional signals to determine whether any action is needed [15,16]. Patients with chronic diseases need to be motivated and engaged in their own care, and self-care is important for successful treatment [15]. Self-care improves well-being and health-related quality of life in patients with chronic disease. The value of self-care is to be healthy, aiming at reducing symptoms. Selfcare also gives the patient an opportunity to get involved with others and ask for help when needed [17].
High patient activation has been shown to be associated to remission. Self-care is important for successful treatment and requires that patients are well informed about their disease, its treatment and the agreed care plan [18]. Self-care is crucial for patients with these conditions to maintain a good health-related quality of life. Patients with IBD engage in self-care activities mainly to control disease activity or to manage or adapt to the symptoms. Another challenge faced by patients with IBD is the need to manage side effects of the medications used to treat the illness [19].
Symptom recognition, handling of symptoms, planning one's life, and seeking new options have been described as self-care activities in daily life among patients with IBD. Self-care in daily life includes, for example, medication adherence and dietary adjustments [20]. Self-care also means planning for urgent access to a toilet, which affects daily functioning [8]. Until now, research exploring self-care in relation to disease activity and health-related quality of life among patients with IBD has been limited. The knowledge gap relates to how disease activity influences self-care. The gap also include how selfcare affects health-related quality of life in these patients. Both patients and healthcare professionals need to understand why and when the symptoms occur to choose adequate self-care management [21].
Several factors, including skills, self-care confidence, and cultural beliefs, influence the self-care process [17]. An understanding of the patient's subjective symptom experience can improve the healthcare professional's ability to support self-care [22] and increase the patient's health-related quality of life [23].
Motivation, good health-promoting activities, and discussing medication adherence can contribute to achieving this goal. Thus, the objective of this study

Design and sample
A cross-sectional exploratory design was used. The methods of this study are reported in accordance to STROBE guidelines [24]. Between December 2015 and April 2017, nurses or physicians from three gastroenterology clinics asked adult patients to participate via letter or in-person. Inclusion criteria were patients with IBD and language knowledge in reading and writing the language. Approval was obtained by the Regional Ethical Review Board.

Data collection
Nurses or the physicians at each gastroenterology clinic provided study information through an information letter that included study objectives and description, what volunteering entailed, and information about the ability to withdraw at any time.
In the gastroenterology clinics, in total 480 patients were approached and invited to participate. Of these, 234 patients completed and sent the informed signed consent and the questionnaires in a postage-paid return envelope, and no reminders were used.

Measurements
Patient characteristics were measured through a The Harvey-Bradshaw Index is validated for patients with Crohn's disease [25].

The Simple Clinical Colitis
Activity Index is a 6-item disease activity index for ulcerative colitis with a maximum score of 19 [26,27].
Disease activity was divided into remission (≤2 points) or relapse [26,27]. This index is validated for assessing disease activity in ulcerative colitis [28].

Data analysis
Descriptive statistics are used to present self-care, patient characteristics, and disease activity. Data are expressed as mean and standard deviation, median and interquartile range or range, or frequency and percent, as appropriate [30].

Self-care in daily life among patients with IBD
Self-care maintenance was expressed in that most patients were taking medication for IBD as prescribed by a physician sometimes, often, or always (93%) (

Self-care and disease activity
Patients with Crohn's disease (n = 93) had a median  Table 3).     self-care that has positive outcomes for patients.

Strengths and limitations
A variety of factors may have been involved in why half of the patients chose to not participate. No reminders were used, and we could not perform a non-responder analysis. However, the response rate was low but assessed as acceptable and similar to that of other studies involving patients with IBD [5].
There are always limitations in self-reported data, anyhow nothing in the collected demographic or disease-related data indicates selection bias, but that we can still not rule it out [55]. Recruitment of patients with IBD was performed at three gastroenterology clinics in Sweden, which may strengthen the findings because a larger sample in healthcare settings in multiple centers is recommended [56]. Despite the limitations, this study provides new insights into self-care in a patient's daily life. The findings contribute to clinical and empirical knowledge about the association among self-care, disease activity, and health-related quality of life.

Conclusion
When meeting the patient with IBD, healthcare professionals need to discuss symptoms regularly and highlight self-care activities related to self-care maintenance, self-care monitoring and self-care management. Healthcare professionals need to identify which patients need the most support. Selfcare maintenance, self-care monitoring and self-care management in patients with IBD are associated with disease activity and health-related quality of life.