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The aims of this study were to determine whether a registered nurse can collect information and plan a holistic and individual strategy for the treatment of patients with irritable bowel syndrome (IBS) and whether this approach can reduce these patients' health aspects. The referrals of 50 Swedish-speaking female patients aged between 18 and 65 years with the preliminary diagnosis of IBS were collected and scrutinized by a gastroenterologist at a university hospital. Of these, 41 patients agreed to participate but 2 did not show up. The 39 patients were randomized into one of two groups: (1) the intervention group (n = 19) where the subjects were interviewed on the basis of the theory of culture care by a nurse before visiting a gastroenterologist and (2) the control group (n = 20) where the subjects first met a gastroenterologist. After the medical examination, 19 subjects were found to have diseases other than IBS. The interview gave a holistic view of the subjects' problems, which could be of use when planning further care. Because subjects sometimes did not receive an accurate diagnosis by their primary care physician, however, the clinic nurse could not give these subjects IBS-specific information because the subjects' diagnosis had not been established. The initial medical assessments based on the primary care doctors' care of many subjects with IBS symptoms were a noted weak point.
Irritable bowel syndrome (IBS) is a global disease with the overall prevalence of IBS in Europe estimated to be 10% (Hungin, Whorwell, Tack, & Mearin, 2003). The prevalence has been reported as high as 22% by American researchers (Drossman, Whitehead, & Camilleri, 1997). The etiology is unknown, but heredity, psychosocial factors, nutrition, and inflammation/infection have been proposed (Drossman, 2006).
The diagnosis for IBS is based on the Rome criteria, with a third version introduced early in 2006 (Chang, 2006; Drossman, 2006). Abdominal pain and bloating are the dominant symptoms of IBS (and also the most troublesome) (Dapoigny et al., 2004), in combination with altered bowel habits such as constipation or diarrhea (Thompson et al., 1999). Apart from physical health problems, IBS also has a negative influence on a person's mental health (Caudell, 1994; Folks & Kinney, 1992) and daily life (Creed et al., 2001; Hahn, Yan, & Strassels, 1999), and thereby health-related quality of life.
Patients diagnosed with IBS must deal with this lifelong disorder. Although IBS is not a grave or life-threatening condition, the symptoms can be very severe and disabling (Bengtsson, Ohlsson, & Ulander, 2007b). Patients with mild gastrointestinal (GI) symptoms may respond to pharmaceutical drugs such as laxatives, fiber, and loperamide, but patients with severe refractory IBS are more difficult to treat (Olden & Brown, 2006).
When individuals decide to seek healthcare services, they have made a judgment about the importance of symptoms and their interference with their life (Wilson & Cleary, 1995). Not all persons with bowel symptoms characteristic of IBS seek healthcare (Hungin et al., 2003). Among those who seek help, most are diagnosed and treated at primary healthcare centers, but patients are also referred to gastroenterology clinics (Hungin et al.; Simren, Abrahamsson, Svedlund, & Bjornsson, 2001; Thompson, Heaton, Smyth, & Smyth, 2000).
The first visit to a physician, mostly in primary care, begins with a systematic interview of the patient by asking questions related to GI symptoms. It is important to obtain a detailed history to identify alarm symptoms to discover any organic disease. Alarm symptoms can, for example, include blood in the stools, weight loss, nocturnal symptoms, and a family history of cancer (Torii & Toda, 2004).
IBS cannot be diagnosed by physical examination, laboratory tests, or endoscopic or radiologic investigations, although the patient has to undergo tests to exclude other diseases (Bellini et al., 2005; Cash & Chey, 2004; Olden, 2002). IBS has traditionally been considered as a diagnosis of exclusion rather than as a primary diagnosis, because there are no observable biochemical or structural abnormalities to be found (Cash & Chey, 2004). Registered nurses can be involved in the planning and implementation of therapeutic interventions for this patient population (Dill & Dill, 1995; Smith, 2006; Talley, 2000), and they can help patients with IBS by teaching them to help themselves (Bengtsson, Ulander, Bergh Borgdal, Christiansson, & Ohlsson, 2006; Dill & Dill, 1995; Talley, 2000).
Many patients with IBS, however, seek medical care for many years at different healthcare levels and consume a significant amount of resources. In earlier studies, we have shown how patients with IBS have perceived the management of their treatment to have been inadequate (Bengtsson & Ohlsson, 2005) and the routines for how patients are taken care of at a clinic ought to be arranged to benefit patients. For the most part, healthcare professionals (e.g., doctors, nurses, dieticians, and physiotherapists) work separately and give patients individual consultations. Some of the patients are admitted to gastroenterology clinics. This prompts the question of whether an early contact at the gastroenterology clinic with a registered nurse who has experience and knowledge of IBS could be made part of the routine care for these individuals because the patients have already been examined by a physician in primary care.
The populations of most countries are increasingly multicultural, and patients are of different ethnicity and cultural background. Cultural, physiological, psychological, and social health factors influence how patients perceive illness (Leininger, 1991). Therefore, there is a need to discover ways to provide individually culturally collaborative care in order to regain patients' health and well-being (Bengtsson & Ohlsson, 2005; Bengtsson et al., 2007b).
It is a challenge for nurses to provide holistic and meaningful care, but nursing theories can be of help to discover new perspectives care. Leininger's Theory of Culture Care (Leininger, 1991) may be one way for nurses working in a multicultural society to identify proper care for patients with IBS who have different lifestyles. This theory is designed to focus on describing, explaining, and predicting meaningful nursing care that is collaborative with the patient. The nurse and the patient together design a different lifestyle that enhances the health and the well-being of the patient. Leininger (1991) highlights the meaning and importance of culture in explaining an individual's health and caring behavior.
Framed within Leininger's theory of culture care (1991), the aims of this study were to find out (1) whether a registered nurse working at a gastroenterology clinic could collect information and plan (in collaboration with the patient) a holistic and individual strategy for the investigation and care of patients with IBS and (2) whether this collaborative plan can reduce the patients' symptoms and increase their psychological well-being.
All patients' referrals to the Department of Gastroenterology at the University Hospital of Malmo between April 2003 and April 2005 were consecutively scrutinized by a physician specialist in gastroenterology. The referrals of 50 Swedish-speaking female patients aged between 18 and 65 years with the preliminary diagnosis of IBS were collected. These referrals were assessed as to whether all investigations performed were negative and whether the symptoms were in accordance with the Rome II criteria for IBS (Thompson et al., 1999). All 50 identified referrals fulfilled these inclusion criteria, and the patients were asked by mail and telephone to participate in the study. Out of these, 41 women accepted to take part in the study and 9 declined participation. Men were not included because men and women with IBS have different clinical symptoms and differ in their view of their quality of life (Faresjo et al., 2007; Lee, Mayer, Schmulson, Chang, & Naliboff, 2001; Ouyang & Wrzos, 2006).
The study was approved by the ethics committee at Lund University (LU 735-02). The subjects identified were informed of the study details in writing and by telephone, and they gave their written informed consent before entering the study. All patients who agreed to participate and came to the hospital were included in the study and randomized into one of two groups (intervention vs. control). Twenty cards marked with each of the two investigation regimes (intervention vs. control) were put into closed envelopes. The envelopes were shuffled and all subjects received an envelope in consecutive order to determine their group assignment after they agreed to take part in the study.
The subjects in the intervention group first met a nurse and were interviewed for the purpose of creating a collaborative care plan before they met a gastroenterologist. Independent of group, all the subjects received an ordinary medical assessment and a supplementary investigation and a visit to a dietician when necessary, before going back to their primary care center. At the time of inclusion, subjects completed the Gastrointestinal Symptom Rating Scale (GSRS) (Dimenas et al., 1993, 1995; Svedlund, Sjodin, & Dotevall, 1988) and the Psychological General Well-Being (PGWB) index (Dupy, 1984; Wiklund & Karlberg, 1991) questionnaires. The participants also completed the questionnaires 6 months after all the examinations were finished. Before coming to the hospital, the subjects also wrote down their food intake for a week. Calories, vitamins, proteins, and others were counted. All the self-rated questionnaires were sent to the participants by mail.
The nurse collected the information by interviewing the subjects in the study group individually, using a questionnaire based on Leininger's sunrise model (Leininger, 1991). This model is designated to depict a total view of the different dimensions that affect the care of the patient. The purpose of the questionnaire was to structure the interviews and thereby aid and help the nurse interviewing the subjects. The nurse asked questions about family, social, and lifestyle factors, such as sleep, stress, exercise, and smoking; eating habits; medical history including examinations and treatments to date; religious and educational background; and economic factors, with the focus on occupation. The intention was to get a full holistic view of the subject and, at the end of the session, in collaboration with the subject, create a care plan, taking into account the subjects' symptoms, lifestyle, and psychological well-being in relation to their worldview and cultural and social circumstances.
The GSRS is a Swedish questionnaire designed to evaluate GI symptoms, which can be used for patients with various GI diagnoses (Dimenas et al., 1993, 1995; Svedlund et al., 1988). The questionnaire includes 15 items valued on a 7-grade Likert scale. This gives a total range value between 15 and 105, where the higher the scores, the more pronounced are the symptoms. The items are divided into five dimensions: abdominal pain syndrome (three items), reflux syndrome (two items), indigestion syndrome (four items), diarrhea syndrome (three items), and constipation syndrome (three items).
The PGWB index is a generic instrument for measuring positive and negative aspects of subjective well-being and distress (Dupy, 1984), and a Swedish version has been presented by Wiklund and Karlberg (1991). Translation of the PGWB index was completed by using backward-forward techniques. The questionnaire includes 22 items valued on a 6-grade Likert scale, with a total range value between 22 and 132. The higher the score, the better is the patient's psychological well-being. The items are divided into six dimensions: anxiety (five items), depressive mood (three items), positive well-being (four items), self-control (three items), general health (three items), and vitality (four items). The PGWB index has been found to have a high degree of reliability and validity in both population-based and mental health samples (Naughton & Wiklund, 1993). The internal consistency reliability of the PGWB index is acceptable with Cronbach's [alpha] correlations ranging from .61 to .89. Cronbach's [alpha] value for the entire PGWB index was greater than .90.
The PGWB index and the GSRS have been tested on a Swedish population, and norm values have been described by Dimenas, Carlsson, Glise, Israelsson, and Wiklund (1996). In a study of 1,600 patients experiencing GI complaints, Dimenas and associates (1993) found that the patients experiencing GI complaints had lower levels of well-being than those who were not experiencing such symptoms. Concurrent validity of the GSRS and the PGWB index were completed by correlating the instruments with several other instruments (Bengtsson, Ohlsson, & Ulander, 2007a; Wiklund & Karlberg, 1991).
For the power calculation, the program "Repeated Measures ANOVA Power Analysis" was used. In the calculation, a 10% reduction in the subject's GI symptoms according to the GSRS and a 5% improvement in the subject's well-being according to the PGWB index were estimated. Because the subject's psychological well-being is affected by things other than the physiological symptoms, the limit for improvement was set lower for the PGWB index than for the GSRS. The values used for the power calculation were based on estimations performed in an earlier study (Bengtsson & Ohlsson, 2005). According to an F test calculated for each instrument, there was a need for nine subjects to reach a 97% power level.
The results are mainly presented descriptively. Values for age were expressed as mean and standard deviation, and other values were expressed as median and interquartile range (IQR). The Wilcoxon signed rank test was used for the calculation of the GSRS and the PGWB index over time, and Mann-Whitney U test for comparing two independent groups. An [alpha] value at p < .05 was considered statistically significant.
Of the 41 women who accepted to participate in the study, 2 did not show up at the clinic. An overview of the subjects' progression through the study is shown in Figure 1. The 39 subjects included were randomized into the intervention group (n = 19) and the control group (n = 20). The gastroenterologists' physical examinations established that only 20 of these 39 subjects had a diagnosis of IBS. The results from only these 20 subjects diagnosed as having IBS are presented. The 20 subjects had a mean age of 34 +/- 13 years (range 19-59 years). The characteristics of the subjects with IBS in the two groups are shown in Table 1. There was no statistically significant difference concerning the use of healthcare resources prior to the study between subjects in the two groups.
Of the 19 subjects (49%) who were found not to have IBS, some had fat or bile salts malabsorption (n = 4), lactose intolerance (n = 3), eating disturbances or drug abuse (n = 4), esophageal cardiac sphincter insufficiency with reflux (n 1), celiac disease (n = 1), hemorrhoids (n = 1), collagen colitis (n = 1), Crohn disease (n = 1), and multiple severe diseases such as heart and renal failure (n = 1), and 2 subjects became spontaneously healthy.
The subjects who were randomized into the intervention group first met a registered nurse with experiences and knowledge of IBS. By using the modified version of Leininger's sunrise model (1991), the nurse gathered information from the subject and took blood samples for laboratory analyses ordered by the gastroenterologist who had scrutinized the admission. The nurse found the questionnaire easy to use, but questioning the subjects about economic and educational factors was perceived as demanding by the nurse.
It was obvious that all subjects who were referred to the hospital wanted, as well as expected, to first meet a gastroenterologist for a thorough medical examination and confirm their illness. The subjects were dissatisfied with their earlier contact with the primary care center and said that they did not receive respect from healthcare professionals. The subjects perceived that the staff had not believed them and their problems were ignored. When all the information from the subjects was collected, the conclusion was that all that the subjects wanted was to be relieved of their illness and have a normal life.
The nurse discovered that most of the subjects had not been completely examined by their primary care physician, and the diagnosis of IBS was not entirely established; therefore, the nurse could not recommend anything other than supplementary investigation even though visits to a dietician or psychologist could have been of benefit to most of the subjects. In one case, however, the nurse discovered that the subject had celiac disease after blood samples had been taken and analyzed, and the subject therefore received appropriate instructions on diet from the dietician before the medical examination.
All but two of the subjects told a similar story. They had felt miserable as children and they thought they were not good enough even as adults. The subjects have high demands on themselves and difficulties with setting limits for other people who require much from them. Some of them had taken responsibility for their family members, and even today, they still had this kind of responsibility. Seven of the subjects still live a stressful life at present and only two of them exercised regularly several times per week. Six of the subjects were smokers.
The analysis of the subjects' eating habits showed that almost all had an unhealthy diet. Even if they ate fruit daily, all of them ate sweets at least once a day. According to the Nordic Nutrition Recommendations (Becker et al., 2004), all subjects had too low an intake of vitamins, and six of the nine subjects had too low an intake of dietary fiber, iron, and calcium.
The nurse could not give IBS-specific information because the subjects' diagnosis had not been established; therefore, the nurse provided general information about physical activity and stress management and about how these subjects affect and interact with health (Bengtsson et al., 2006). The nurse also gave basic information on nutrition and general advice on how often and what to eat. After being examined by a gastroenterologist, the subjects who had poor food habits were instructed to complete a diet registration questionnaire before their visit to a dietician.
At the visit to the gastroenterologist, a thorough medical assessment was made. In this group, six subjects met with the gastroenterologist once and three subjects met with the gastroenterologist twice. Three subjects also talked to the gastroenterologist through telephone calls as a follow-up (Table 2). The subjects in this group made fewer visits and more telephone calls to the gastroenterologist than did the subjects in the control group.
In the control group, 5 of the 11 subjects met the gastroenterologist once, 3 subjects met the gastroenterologist twice, and 3 subjects met the gastroenterologist thrice. Seven subjects also talked to the gastroenterologist through telephone (Table 2). Only 2 subjects in this group were not further investigated before being referred back to the primary healthcare center.
The scores of the GSRS and the PGWB index assessed before inclusion in the study by the subjects who had IBS (n = 20) are shown in Tables 3 and 4. Although a small improvement of the scores was observed for the subjects in the study group (n = 9) before starting the investigation (GSRS median score = 51, IQR = 39-60; PGWB index median score = 88, IQR 63-95), compared with that 6 months after last contact with the hospital (GSRS median score = 49, IQR 42-62; PGWB index median score = 90, IQR 75-107), there was no statistically significant difference. There were no statistically significant differences between the two groups in the present study or when compared with the subjects who had GI diseases but not IBS.
Leininger's sunrise model (1991) used in the present study was of help to collect information from the subjects, who showed signs of frustration and anger at being misunderstood. Each subject and the nurse did reach a collaborative agreement; however, none of the subjects were completely investigated even though they had visited a physician in primary care and a specialist had scrutinized the admissions. If this model should be used, a thorough medical examination and radiographic examinations have to be performed first of all to exclude other diagnoses. It is important when the IBS diagnosis is established that there are no observable biochemical or structural abnormalities to be found (Cash & Chey, 2004) before a nurse, in collaboration with the patient, can plan a further strategy for care.
A gastroenterologist might preferably be the first to meet the patient in a gastroenterology department in order to confirm a diagnosis and validate patient's perception of his or her condition (Alaradi & Barkin, 2002; Shen & Soffer, 2001); however, one reason to let the patient meet a nurse first is that the admission process can be completed on the basis of the assessment from earlier primary care examinations. Another reason is that if alarm symptoms are present, the time before meeting the gastroenterologist could be decreased by using the nurse for screening. Moreover, a nurse can have an important role in supporting and informing the patient and can coordinate further care when the diagnosis is established (Dill & Dill, 1995; Hogston, 1993; Smith, 2006). By interviewing the patient with a focus on physiological, psychological, and social health aspects, risk factors that aggravate the symptoms should be identified and excluded. In this study, the nurse worked with the subject in a coparticipant manner to develop a repatterning or restructuring of nursing care, and together, they designed a different lifestyle for the health and well-being of the patient (e.g., care related to eating, smoking, mental health, and physical activity).
Patients primarily seek help for their symptoms at a primary healthcare center, and the physician there should diagnose patients with IBS correctly before a referral is sent to a gastroenterology clinic. An organic disease should first be excluded (Cash & Chey, 2004; Torii & Toda, 2004) by the examination at the primary care clinic. The routines followed by physicians differ, however, depending on practice speciality and the availability of specialized tests (Lacy et al., 2006). Tests to exclude, for example, lactose intolerance, fat and bile salts malabsorption, and celiac disease, are easy to perform.
Steps have been taken to better understand the pathophysiology in IBS but much is still unknown. According to several authors, there is a lack of knowledge among physicians and nurses on how to treat patients with IBS (Bellini et al., 2005; Heitkemper, Olden, Gordon, Carter, & Chang, 2001; Heitkemper, Carter, Ameen, Olden, & Cheng, 2002; Letson & Dancey, 1996, Longstreth & Burchette, 2003; Richmond & Devlin, 2003). More instruction for physicians and nurses in primary care about IBS and other gastroenterology diseases may improve their ability to treat patients with GI symptoms and to diagnose IBS (Lacy et al., 2006). A nurse with specialized knowledge of IBS working at a primary care center may be a benefit for patients with this disorder. The nurse could coordinate the investigation, offer information and support, and help the patient learn to live with the illness (Dill & Dill, 1995; Hogston, 1993; Smith, 2006).
In the present study, the subjects suffering from IBS told the nurse in the interview that they felt misunderstood and not taken seriously by their earlier healthcare contacts. The attitudes toward patients with GI symptoms differ from person to person, but this ignorance and lack of respect have also been reported in studies in the United Kingdom (Dancey & Backhouse, 1993), Canada (Meadows, Lackner, & Belic, 1997), Ireland (O'Sullivan, Mahmud, Kelleher, Lovett, & O'Morain, 2000), and Sweden (Bengtsson et al., 2007b). By tradition, physicians have used their own knowledge and judgment to make decisions on behalf of their patients, but this trend is changing (Le Var, 2002). In general, patients of today also want information about their illness and wish to be more involved in their treatment (Coulter, 1997).
Patients and doctors have sometimes different perceptions of the goal of the treatment and the need of investigations; therefore, the patients' expectations need to be explored (Bijkerk et al., 2003). The physicians and nurses have to establish a good relationship with the patient and show interest and concern, which requires an interaction with the patient. If the healthcare professionals do not establish a good relationship with the patient, there is a risk that the patient will seek help elsewhere and may use inappropriate therapies. It is important that there is collaboration between the patient and the caregiver. According to Owens, Nelson, and Talley (1995), a good relationship between the caregiver and the patient can reduce the number of return visits.
Patients with GI symptoms constitute a heterogeneous group of patients with differences in duration, severity, and type of symptoms, and all healthcare professionals have to deal with each patient's specific worries, fears, and concerns about IBS (Olden & Brown, 2006). Some of the patients suffering from IBS had poor food habits and an unhealthy lifestyle. When the diagnosis is established, perhaps all patients with IBS should be offered systematic, structured, empowering group instruction with a focus on their physical and mental health. The goal of empowering education is to reach a collaborative care plan that aims at encouraging the patient to become an active partner and, together with healthcare professionals, take control of the disorder (Rankin & Stallings, 2001).
Instruction to patients with IBS about health-promoting modifications of lifestyle, including physical activity, diet, and stress management, has been given in the United States and Sweden, with some improvements in the participants' health (Bengtsson et al., 2006; Colwell, Prather, Phillips, & Zinsmeister, 1998; Saito et al., 2004). The patient should be instructed about the underlying pathophysiology and be informed about different forms of treatment, diet, and a healthy lifestyle, as well as physical activity and stress management. If patients know the factors that influence the symptoms and what to anticipate, they are better prepared to face the inconveniences the symptoms create; and thus, the symptoms and well-being in these patients can be improved (Bengtsson et al.; Saito et al., 2004). In the present study, this improvement was not seen, which may be due to the short follow-up time, or the information given was not specific for patients with IBS. Also, the patients had had their symptoms for several years.
The study has certain limitations. One limitation is the small number of patients participating. This is similar to other studies (Bengtsson & Ohlsson, 2004; Halpert et al., 2006; Ohlsson et al., 2006). It seems strange that patients who are distressed in their search for help for their troublesome symptoms are not interested in participating in a study concerning their own specific problems. One may speculate that the patients with IBS want a simple solution to their problems, such as an efficient drug. They are not able, or do not have time, to put a lot of work into their problems and are not interested in answering research questionnaires (Halpert et al., 2006). Another limitation is that many gastroenterologists at the gastroenterology department were involved in the study and have different routines for how to contact and inform their patients of the results of the radiographs and other tests the patients have undergone. Therefore, no conclusions based on the number of visits or telephone calls to the gastroenterologist can be drawn, even though there are differences between the groups investigated.
The new Rome III criteria were published after this study had started, but the new criteria may not have affected the study or the results because all 50 identified referrals of Swedish-speaking female patients aged between 18 and 65 years with the preliminary diagnosis of IBS were asked to take part in the study. No referrals were excluded after the gastroenterologist had scrutinized the referrals according to the Rome II criteria.
This study showed that a questionnaire based on Leininger's sunrise model (1991) could be of help when collecting information from a IBS-diagnosed patient and for planning further collaborative care based on each patient's individual needs. A nurse cannot, however, initially replace the gastroenterologist at a gastroenterology department and plan a strategy for the investigation until the diagnosis of IBS has been established. Nineteen (49%) of the 39 patients included in the present study received a diagnosis other than IBS after examination by the gastroenterologist or they recovered spontaneously, even though IBS had been suggested by the physician in primary care and was suspected by the specialist. Accurate diagnosis by the primary care physician is critical to further expedite the care of IBS patients in the gastroenterology clinic setting.
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