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Review paper

Health-related quality of life assessment among patients with inflammatory bowel diseases after surgery – review

Grażyna Bączyk
,
Dorota Formanowicz
,
Łukasz Gmerek
,
Piotr Krokowicz

Gastroenterology Rev 2017; 12 (1): 6–16
Online publish date: 2016/11/29
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Introduction

Ulcerative colitis (UC) and Crohn’s disease (CD) are inflammatory bowel diseases (IBD), the cause of which are immunological disorders, leading to gastrointestinal injury. Both UC and CD are often related in terms of clinical symptoms with periods of remission and of active intestinal inflammation (abdominal pain, diarrhoea, bloody diarrhoea, or pus and mucus per rectum) that may require hospitalisation [1, 2]. Treatment of IBD consists of anti-inflammatory and immunosuppressive drugs including biological therapy with tumor necrosis factor  (TNF-) inhibitors for inducing and maintaining remission [3, 4].
Generally, IBD is more common in industrialised than rather in agricultural countries, with the highest incidence rates reported the in the United Kingdom [5], Scandinavia [6], and North America [7, 8]. In Europe alone more than three million people are estimated to be affected by IBD. Eastern Europe has recently reported rising incidence rates, so their mean IBD occurrence is comparable to that of Western Europe [9]. Data on the epidemiology of IBD in Eastern Europe, including disease course and treatment choices, are limited by the small number of studies available [10]. There is a continuing trend toward increasing incidence and prevalence of IBD across Asia (particularly in East Asia). While this is occurring among developing nations, it is also being seen in Japan, a socio-economically advanced country [11]. Moreover, the incidence of UC has been increasing in Western countries since the Second World War.
The incidence of CD is less than 1 per 100,000 in Asia and South America, 1–3 per 100,000 in southern Europe and South Africa, 16 per 100,000 in New Zealand and Australia, 14 per 100,000 in Canada, and 7 per 100,000 in the USA (based on data only from Olmsted County, Minnesota).
In developed countries, UC emerged first and then CD followed. In the past 20 years, CD has generally overtaken UC in incidence rates. In developing countries in which IBD is emerging, UC is typically more common than CD. For example, in India, there are reports of a UC/CD ratio of 8 : 1 [11].
Inflammatory bowel diseases have a chronic course and cannot be completely cured by pharmacological methods. Even after many years of remission, the disease recurs after some time, resulting in the need to start treatment from the beginning. Therefore, patients with IBD should be under the constant care of a specialist. In addition to pharmacological and dietary treatment the patient requires the constant care of a clinical psychologist. Quite often, patients will require surgery. The objectives of surgical treatment, which originally consisted of mere reduction of fatality and incidence, have evolved over the years to focus on improvement in the quality of life (QoL) [12]. Quality of life is a broad evaluation of human function concerning a variety of domains, and according to the internationally accepted definition it is an individual’s perception of their position in life, in the context of the culture and value systems in which they live, in accordance with goals, expectations, standards, and concerns [13]. Outcomes of QoL assessment are important for the development of therapeutic programmes for patients with non-specific IBD requiring surgical treatment. On the other hand, another approach to this issue seems to be even more suitable. It concerns the use of assessment of health-related quality of life (HRQoL), which is a part of QoL. According to the definition of the World Health Organisation (WHO), HRQoL depends on main areas such as physical, mental, and social functioning, as well as the patients’ subjective evaluation of their QoL, so it incorporates both objective and subjective aspects. This concept is the most frequently used for studies as well as for evaluation of treatment outcomes [14] and is not as extensive as the QoL evaluation.
To assess the quality of life in patients with IBD, especially for UC patients, disease-specific health-related quality of life questionnaires are the most commonly used. Among them is the Inflammatory Bowel Disease Questionnaire (IBDQ-36) [15], which covers the assessment for general QoL and in individual domains: bowel symptoms – amount of stools, presence of thin stools and blood in stool, stomach aches, pain of systolic intestines, swelling of the stomach, transiting of gasses, feeling an urge to pass a stool, dirtying underwear, nausea, and stomach complaint; systemic symptoms – tiring out and tiring, level of energy, bad physical and mental state, sleeping disorders, and weight loss; emotional function – impatience, anxiety connected with necessity of surgical treatment, anxiety connected with the impossibility of finding a toilet, depression, relaxation, confusion because of intestinal problems, anger, slight annoyance (or crying), oversensitivity, depression, lack of understanding, and satisfaction from one’s life; social function – absence from work or school, the need to cancel sports matches, the impossibility to practise sport and to spend the free time in an enjoyable way, avoiding sports matches and places where there is no close access to a toilet, and limited sexual activity. Lower scores indicate lower QoL.
The next questionnaire is the Cleveland Global Quality of Life Instrument (CGQLI), which was developed by Fazio et al. [16] to study QoL among UC patients after proctocolectomy with ileal pouch-anal anastomosis (IPAA). This scale assessment HRQoL contains three domains: current QoL, quality of health, and energy level. Overall score is calculated from these three domains. The Gastrointestinal QoL Index (GIQLI) also measures HRQoL and consists of 36 questions focusing on gastrointestinal disorders. It consists of five dimensions: physical function, emotional status, social function, gastrointestinal symptoms, and distress from medical treatment [17].
On the other hand, the Colorectal Functional Outcomes Questionnaire (COREFO) has been used to study QoL in patients with UC. It consists of 27 questions combined in five multi-item scales – faecal incontinence, social impact, stool frequency, stool related aspects, and the need for anti-diarrhoea medication. The scoring is from 0 to 100, with higher scores indicating more bowel-function problems [18]. The Faecal Incontinence Quality of Life Scale (FIQLS) by Rockwood et al. [19] was used as a “symptom-specific score” to assess the effect of faecal incontinence on QoL in UC patients after IPAA. This scale consists of 29 questions in four domains: lifestyle, coping/behaviour, depression/self-perception, and embarrassment. The Short Form 36 scale (SF-36) has been used to study generic QoL [20]. This scale consists of 36 questions evaluating QoL in eight domains: physical functioning, social functioning, role limitations due to physical and emotional problems, mental health, energy and vitality, body pain, and general health perception.
The increasing number of studies focusing on QoL and HRQoL in patients with IBD combined with the increasing number of performed operations prompted us to investigate the existing literature to find a reliable influence of surgery on QoL and HRQoL in patients suffering from UC or CD.
This is an overview of the available literature on QoL and HRQoL in patients with IBD, with particular attention paid to the effects of surgical treatment. We analysed the effects of various surgical therapies on QoL and HRQoL in patients suffering from IBD. On the other hand, it should be underlined that the instruments (scales, questionnaires) that were used by various researchers in their studies might be individually inadequate. Thus, to have a deeper insight into this issue and to find a real correlation between surgical therapies, QoL, and HRQoL, we integrated available data meeting our input criteria to provide an accurate evaluation of the QoL and HRQoL in patients with IBD after surgery.

Methods

To identify potential articles to be included in this review, the MEDLINE, CINHAL, and Pub Med bases were searched for all abstracted articles from the years 1990 to 2015. The following subjects were taken into account: quality of life (MESH), health-related quality of life (MESH), inflammatory bowel disease (MESH), ulcerative colitis (MESH), Crohn’s disease (MESH), and surgery (MESH). We also studied the reference list of the relevant articles for titles that included the words: quality of life and surgery.
The search was limited to English-language, adult population, and full-text publications. We excluded articles that presented studies related to the validation of the questionnaire and articles concerning patients with unclear IBD diagnosis or lack of surgical treatment.

Results

Articles selected during the initial search: 30,0884. Articles selected based on title and abstract: 4317. Articles selected on the basis of the full text: 138. Articles that meet specified criteria: 28.
The obtained results are summarised in the Table I. This table contains information about the purpose of research, the study group, the used scales, the results obtained, and the conclusions. To facilitate the understanding of the presented results, general information about the individual scales is shown below the tables, i.e. number of questions, and the number studied domains (Table I).

Discussion

Research in the last 25 years has focused on the following aspects:
1. Impact assessment of surgical treatment on quality of life in patients with UC or CD [21–48].
2. Comparisons of the quality of life of patients with regard to the different methods of surgery, pharmacology, and disease activity [21, 24, 26, 30, 32–34, 37–39, 41, 43, 46].
3. Assessment of quality of life before and after surgery and the assessment of the observed changes in quality of life including the time elapsed since surgery [25, 32, 39–41].
4. Determination of the factors affecting the quality of life in the post-operative period [42, 46–48].
5. Assessment of the quality life of patients with UC or CD, including the choice of treatment [23, 28, 45, 46].
Improvement of HRQoL is the main determinant in decision-making for surgery in patients with UC and CD. Research has shown that surgical interventions positively affect HRQoL in patients with IBD, and analysis of the majority of studies shows that patients with CD have a poorer HRQoL than patients with UC. Analysed results investigated the short- and long-term effects of surgical therapy for UC and surgical resection for CD on HRQoL. Most of the research concerns the assessment of quality of life before surgery and in the early (and some later) period after surgery [22, 25, 32, 33, 40]. The HRQoL was lower shortly after surgery than later among UC patients, but for CD patients it appears to improve the quality of life in the immediate postoperative period, but after a longer lapse of time it is comparable to the quality of life before the operation; it follows the natural course of the disease [22].
Surgical resection leads to improved long-term HRQoL, with the exception of patients with chronic disease process and active disease, especially for patients with CD. These factors should be considered before surgery is indicated in CD [25]. Surgical advances, such as the introduction of minimally invasive surgeries, intestinal-sparing strictureplasties, and the adaptation of different approaches to anaesthesia in patients undergoing CD surgeries. These techniques hold the promise of improving HRQoL. Results after strictureplasty are comparable to those after resection in terms of complications, recurrence, and quality of life in the treatment of small bowel strictures in CD [22, 23, 27].
Surgical treatment of patients with CD the alleviation of the symptoms. It is therefore needed to assess the effect of surgical treatment on the quality of life of these patients. Studies have shown a low QoL and highlight a significant influence of intestinal ailments as the main determinant of the perception of the QoL of patients with IBD [32, 46].
In the study by Casellas, a comparison of HRQoL between surgical and pharmacological treatment patients with CD patients showed that HRQoL is impaired in active CD and improves during remission regardless of whether it had been achieved medically or surgically [26].
The analysed studies were conducted using specific questionnaires (disease-specific scales) and general (global scales) for the assessment of quality of life. Most studies used disease-specific scales: the Gastrointestinal QoL Index, the Inflammatory Bowel Disease Short Questionnaire, and the Faecal Incontinence Quality of Life Scale. In turn, among the global scales the SF-36, WHOQOL-100, and RAND-36 were used. In the clinical course of IBD mood disorders are common, and therefore in some studies levels of depression and anxiety were examined. Moreover, in the case of CD, researched disease activity was determined on the basis of the Crohn’s Disease Activity Index (CDAI). The most common surgical treatment choice, particularly in patients with UC, was TP-IPAA total proctocolectomy with ileal pouch-anal anastomosis (with different techniques of creating an ileal pouch – J, W, S) [49].
In should be underlined that in the case of UC the type of surgical procedure is dependent on the patient’s clinical status. In case of fulminant UC with signs of massive colonic bleeding, perforation, toxic megacolon, or in the case of heavily malnourished patients receiving long-term immunosuppressive and steroid treatment, the most reasonable choice is total colectomy with end an ileostomy. During this procedure a long rectal stump is usually left in order to be recognised easily during the next operation. Total colectomy without forming anastomosis is reserved only for severe, life-threatening cases of UC, and it is just the first stage of surgical treatment. After the patient’s full recovery, which usually takes about one year, the next procedure involves the creation of an ileal pouch. During the next step the rectal stump is removed, and the ileal pouch (J-pouch is preferred) is formed and anastomosed with a rectal cuff using a mechanical circular stapler (CEEA 28 or 31). Since the anastomosis is located low in the pelvis (to avoid clinical manifestation of anastomotic leak sometimes) it is necessary to form a loop ileostomy for 3 months. The last step of surgical treatment is reconnection of the alimentary tract, which does not involve a laparotomy but just a small parastomy incision. In most cases of UC the procedure can be performed in two stages: total proctocolectomy with ileo pouch-anal anastomosis and temporary decompressing loop ileostomy and closure of the ileostomy after 3–6 months, depending on the patient’s condition [50, 51]. A one-stage surgical treatment, reserved for UC patients who are in a good condition, consists of ileal pouch-anal anastomosis without temporary decompressing ileostomy [47, 52]. Studies have shown that after IPAA the overall HRQoL was good. Additionally, QoL after IPAA and reached, increased levels comparable with a healthy population served as a reference group in the majority of domains [41, 46]. However, high stool frequency, faecal incontinence, and pouchitis were associated with impaired quality of life [41, 46] references the table if you compared the quality of life of patients after IPAA patients with UC patients on medical treatment, HRQoL was at a similar level [21, 46].
The study focused on comparing the quality of life between patients who had the J pouch and those who had the in the pouch, taking into account the different methods of surgical treatment [37]. Based on the obtained results demonstrated similar QoL compared W-pouch with the J-pouch. However, the J-pouch should be the preferred method of choice. There were no significant differences between HRQoL of the ileo pouch-anal patients and those of the ileostomy patients. Perception of body image was better in the ileo pouch-anal patients than among the ileostomy patients [30]. Both total proctocolectomy with ileostomy and IPAA appear to be equivalent in terms of overall health-related quality of life. Most patients were satisfied with their choice regardless of procedure. Most of the improvement in quality of life after surgery was related to the control of disease-related symptoms [53].
Studies on the assessment of the quality of life before and after surgery, and evaluation of changes in the quality of life including the time elapsed since surgery, indicate that HRQoL was with having good QoL even after a long period post-operation. However, the problems associated with: having ileostomy bag, having surgery, energy level, uncertainty of the disease, and pain or suffering did not decrease [22, 28, 29, 31, 36, 39, 44].
In CD, due to tissues being affected in multiple locations, indications for reconstructive proctocolectomy such as those performed for UC are limited. The procedures need to be as conservative as possible because the disease is chronic and incurable. In most cases, the aim of the surgery is to resect only the damaged parts of the intestine (avoiding unnecessary removal of a margin of normal tissue), to drain intra-abdominal abscesses, and to eliminate fistulas. The most frequent indications for surgical treatment of CD patients include intestinal obstruction due to inflammatory tumour or stricture, perforation with signs of acute peritonitis, intestinal fistulas, acute lower GI tract haemorrhage, and perianal fistulas. Typically the inflammatory process is localised in the ileocecal region, and right hemicolectomy is the procedure of choice. Consequently, colonoscopy with examination of the terminal ileum is the most sensitive diagnostic tool. In cases of inflammatory strictures or fistulas localised in the small intestine Magnetic Resonance Enterography (MREG) is considered a gold standard. In the case of inflammatory strictures of the small intestine, Heineke-Mikulicz, Finney, Michelassi strictureplasty, or a bypass surgery can be performed, but most surgeons would prefer resection in order not to leave the source of active inflammation in the peritoneal cavity. Perianal manifestation may be the first symptom of CD. Perianal fistulas in CD patients are complex and impossible to be cured surgically without the adequate systemic treatment of underlying disease, including also biologic therapy. If the anal sphincter is damaged, it may be recommended that abdomino-perineal rectum resection be performed with a definitive colostomy. Formation of an intestinal fistula is also indicated in cases of intestine perforation with peritonitis and surgical treatment of leaking of previous anastomosis [4, 23, 28].
There are fewer studies on the quality of life of patients with CD than UC patients treated surgically, due to other indices for surgery. Casellas’ studies indicate that impaired HRQOL is in active CD, and it improves during remission regardless of whether it had been medically or surgically achieved [26]. On the other hand, Burisch et al. [45] emphasises that pharmacological and surgical treatment improved HRQoL during the first year of the disease.
In conclusion, with the increase in the incidence of IBD monitoring of QoL is an important indicator of the health effects at each stage of the surgical treatment.

Acknowledgments

We would like to thank John Coueslant for his linguistic consultation of the paper.

Conflict of interest

The authors declare no conflict of interest.

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Received: 18.06.2016
Accepted: 16.10.2016
Copyright: © 2016 Termedia Sp. z o. o. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) License (http://creativecommons.org/licenses/by-nc-sa/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material, provided the original work is properly cited and states its license.
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