HEALTH RELATED QUALITY OF LIFE IN ULCERATIVE COLITIS
A Study of Medical vs Surgical Management
Sheetal Shah, T Satyendra, Deepak Amarapurkar
Departments of Surgery and Gastroenterology, Bombay Hospital and Medical Research Centre, Mumbai.
Background : Health related quality of life (HRQOL) is a concept which encapsulates a wide spectrum of physical, social and emotional behaviours and preceptions of individuals and population affected by illness. The assessment HRQOL plays an increasing important role in the evaluation of therapeutic interventions in various chronic diseases including inflammatory bowel disease (IBD).Method : HRQOL assessment was done with standard IBD quality of life questionnaire in 30 patients with ulcerative colitis, of which 15 patients were being treated medically and 15 had failed medical treatment and undergone surgery. These were compared with a group of 15 apparently healthy control subjects. Of the medically managed patients 4 were in exacerbation, 2 had mild activity and 9 were in remission, of the 15 surgically treated patients 9 patients had ileostomy and 6 had ileal and rectal anastomosis with or without pouch.
Results and Conclusion : Medically controlled patients with ulcerative colitis have a reasonably good quality of life (mean score 168.6 ± 56.2 vs 222.4 ± 4.8 in controls). The quality of life in-patients who do not respond to medical treatment is very poor (Pre-operative score 85.8 ± 39.2). The quality of life improves considerably after surgery (mean score 184.6 ± 54.9) and is comparable to medically treated group. The quality of life in patients with ileostomy (206.6 ± 34.2) is better than patients undergoing ileoanal anastomosis with or without pouch (133.6 ± 59.9).
INTRODUCTION
Inspite many technological advances achieving a cure of disease is not possible in many chronic conditions. Ulcerative colitis (uc) is one of them.[1] As cure is not possible various treatment modalities including surgery are used for treatment of UC. In this modern era when cost of medical and surgical treatments is skyrocketing time has come for healthcare providers to judge the quality of life achieved by various treatment modalities. Health related quality of life (HRQOL) considers the various aspects physical, social, emotional behaviours and preceptions of individuals affected by health and illness.[2] HRQOL assess the world health organization’s concept of Health (a) physical mental, social health (b) that health is more than the absence of disease.
HRQOL assessment can be general (e.g. SF 36 questionnaire) or disease specific (e.g. MC Master inflammatory bowel disease questionnaire) HRQOL measures needs of individual patient or group of patients, determining the quality of care defining natural history of the disease, evaluating various treatments and calculating the cost effectiveness of different treatment regimens. This study was designed to assess quality of life in patients with ulcerative colitis as compared to controls (apparently healthy individuals), HRQOL in medically treated and surgically treated patients.
MATERIAL AND METHODS
30 patients with ulcerative colitis managed in our institute over a period of 5 years were evaluated of which 15 patients were being medically treated and 15 had undergone surgery. They were compared against a group of 15 apparently healthy normal controls.
Of the medically managed cases, 4 were in exacerbation, 2 had continuous mild activity and 9 were in remission.The IBD questionnaire (IBDQ), a 32 item questionnaire, evaluates general activities of daily living and intestinal, social and emotional status.[3,4] Responses are graded on a 7 point Likert scale, with “7" denoting no problem and 1 denoting a very severe problem.
Scores range from 32 to 224, with a higher score indicating a better quality of life. Four “dimensional scores” cluster items under 4 heading.
1. B (bowel) - loose stools, abdominal pain; 2. S (Systemic) - fatigue, altered sleep; 3. SF (Social function) - need to cancel social events; 4. E (emotional) angry irritable.
Interview administration took approximately 15 minutes - The patients were interviewed personally. The questionnaire was mailed along with explanatory notes to patients residing out of Mumbai.
Diagnostic colonoscopy had been performed in all the patients after prior preparation with polyethylene glycol. Colonoscopic biopsy was confirmatory in all the cases.
The duration of follow up ranged from 1 month to 5 years postoperatively. Also, conventional laboratory test results like blood biochemistry and stool routine was evaluated.
Details regarding 1. Personal information (address for correspondence); 2. Preoperative evaluation; 3. Operative details; 4. Postoperative management, were obtained from the hospital records.
Identical assessments were performed at unscheduled clinic visits or during hospitalizations.
RESULTS
Demographic profile of the patients was as follows : Male : Female ratio in medically treated patients was 12:3, surgically treated patient 10:5 and controlled groups 10:5. Mean Age was 35.5 years, 37 years and 40 years in medically treated, surgically treated and control respectively. Mean disease duration was 34.6 months and 73.3 months in medically and surgically treated patients. The extent of the disease was pancolitis in 6, left sided colitis in 7, distal colitis in 2 in medically treated patients while in pancolitis in 10, left sided in 3 and distal in 2 in surgically treated patients. Educational status was beyond matriculation in all patients except one. More than 50% patients in each group were either graduates or postgraduates. Family history of ulcerative colitis was noted in 3 patients. Types of surgery: 1) Sub total colectomy with ileostomy -1, 2) Total proctocolectomy with ileostomy -7, 3) Total colectomy with mucosal proctectomy with “S” pouch with loop ileostomy -1, 4) Proctocolectomy with distal rectal mucosectomy with “J” type ileoanal pouch -4, 5) Subtotal colectomy with colorectal anastomosis -1. 6) Iieoanal anastomosis -1.
The period of hospitalization ranged from 5 days to 3 months. Postoperative complications noted were: 1) Septicaemia -2, b. Late perianal fistula -2, c. Adhesive obstruction -2, d. Pulmonary embolism -2, e. Avascular necrosis of the hip (post steroids) -1
The mean IBDQ score was 168.6, 184.6 and 284.4 in medically treated, surgically and controlled groups. The quality of life in ulcerative colitis was significantly impaired. Medically controlled patients had reasonably good quality of life but the patients who do not respond to medical treatment the quality of life is very poor (preoperative score of 85.5 ć 39.26). The quality of life improves considerably after surgery (mean score 175.4 ć 62.12 in patients whose preoperative scores were known and 184.6 ć 54.93 in the entire series) and is comparable to the group which was treated medically. In individual cases, the scores showed restoration normally. The QOL in patients with proctocolectomy with permanent ileostomy (206.5 ć 34.22) is better than that of patients undergoing an IPAA (133.6 ć 59.97).
DISCUSSION
Quality of life, a subjective index of health perception and function, embraces physical, social and emotional performance, but has not had a prominent role in clinical trials of IBD, until recently.
The IBD questionnaire is a reliable, valid assessment tool which reflects important changes in the health status of patients with IBD.[4] The adverse effects of ulcerative colitis are caused by intestinal and extraintestinal complications and also by impact on self image, employment, sexual and family relationships and psychological functions.
These attributes of health related quality of life are gaining increasing interest in research trials. Our study had yielded results comparable to other studies performed on patients with ulcerative colitis who have been managed medically and surgically and subsequently evaluated with respect to the quality of life.
This study of Martin A, et al[5]was aimed at studying the quality of life in patients who underwent proctocolectomy with ileoanal anastomosis with a “J” pouch for severe ulcerative colitis and to compare it with patients with ulcerative colitis of different severity who were under medical treatment.
In ulcerative colitis the scores were significantly higher than in control, increasing with the severity of the disease. Even patients in remission had higher score than controls. The patient who underwent surgery had much better score than patients with severe disease, with values comparable to patients in remission or with mild disease activity.
The authors concluded that in patients with ulcerative colitis even in remission, there is a measurable impairment of the quality of life which increases with the severity of the disease. Procto- colectomy with ileoanal anastomosis may restore an acceptable quality of life in patients with moderate or severe ulcerative colitis. These findings are corroborative with our study.
In our series, those patients undergoing proctocolectomy with ileostomy had better scores than patients with ileal pouch anal anastomosis (mean scores of 206.6 ć 34.22 v/s 133.6 ć 59.97).
A similar study was performed by Jimmo B and Hyman.[6] According to the authors, ileoanal anastomosis with ileal pouch formations is widely claimed to have replaced total proctocolectomy with ileostomy as the procedure of choice for ulcerative colitis, largely on the basis of a perceived improved quality of life.
The aim of the study was to determine whether educated patients choosing total proctocolectomy with ileostomy have a similar quality of life as ileal pouch anal anastomosis.
All the patients with ulcerative colitis referred to a single surgeon and deemed as an appropriate surgical candidate were educated and offered ileal pouch anal anastomosis or total proctocolectomy with ileostomy. Age, gender and complications (including pouchitis) were recorded prospectively and all the patients were questioned regarding functional outcome and level of satisfaction. They were then asked to complete a modified IBDQ which was analyzed by categoric and overall scores.
55 patients with IPAA had significantly more short term or long term complications, with pouchitis being frequent.
The authors concluded that patients with IPAA can expect a good quality of life, best educated patients choosing an ileostomy can achieve the same quality of life without the higher complication rate associated with a pelvic pouch.
A similar study was performed by Heuschen UA, Heuschen G, Herfarth G.[9] They proposed that preservation of function is the decisive advantage of the ileoanal pouch, but it is not equal to quality of life. QOL is a multidimensional concept which can only be assessed by standardized and validated questionnaires. Preoperatively, patients should be informed that preservation of function by restorative proctocolectomy is accompanied by increased postoperative morbidity.
Sagar PM, et al.[10] have compared the quality of life in patients who had undergone restorative proctocolectomy (RP) with that of patients with ulcerative colitis on long term medical treatment.
A detail questionnaire and the hospital anxiety and depression test were completed by 103 patients who had undergone RP and by 95 patients with ulcerative colitis on medical treatment and in remission attending a gastroenterology clinic. They concluded that the quality of life for patients with a pouch appears to be as good as that for patients with medically treated colitis.
A prospective study on the effect of surgery on HRQOL in patients with IBD was carried out by Thirlby RC, Land JC, Fenster and Lonborg.[11] A consecutive series of patients undergoing surgery for IBD between Jan 1994 and Dec. 1997 were prospectively investigated as a cohort outcomes study. Data was obtained in 36 patients with Crohns disease and 27 patients with ulcerative colitis. All but 3 patients with ulcerative colitis underwent ileoanal anastomosis.
Health status was monitored with the health status questionnaire preoperatively and every 3 months postoperatively.
Preoperative results of HRQOL of patients were low, with values well below the general population in all 8 scales of the health status questionnaire. Postoperatively HRQOL measures improved significantly with scores equal to the general populations. These data justify early surgical intervention in many patients with symptomatic IBD, according to the authors. These findings are very similar to our study.
Fazio et al[12] showed a low operative mortality, acceptable rate of early complications and satisfactory functional results in patients undergoing restorative proctocolectomy and IPAA. The results were similar to those reported by Kelly in 1993 at the Mayo clinic.
Fazio’s group used malaise, anorexia, abdominal cramps increased number of bowel movements urgency, bleeding from the pouch and low grade fever to define pouchitis. The reported incidence of 23.5% was in accordance with the Mayo clinic series (28%) and with other reports of 15 to 44% incidence. In our series incidence was 40%. Also strictures at the anastomotic site were found in 14% of Fazio’s series and 40% of our series. However, the discrepancy in the size of the study sample (1005 cases of IPAA v/s 5 cases) must be taken into consideration.
Fazio concluded that IPAA when performed in a territory referral centre can lead to a high quality of life.
Similarly, Kohler - LW, Pemberton - JH, Zinsmeister - AR and Kelly[13] have compared the quality of life after performance of Brooke’s ileostomy, Kock’s pouch and IPAA. They have concluded that the presence of the stoma and faecal incontinence impair the QOA after proctocolectomy. In their series IPAA offered the best quality of life between the 3 operation studied
In contrast Hulten L, has proposed that even if the continent ileostomy and restorative proctocolectomy were great innovations it is by no means obvious that they should be recommended as the first choice for all patients. Pan proctocolectomy and ileostomy can be considered a comparatively safe, predictable operation that can cure the patient and allow a short hospital stay and quick rehabilitation.
Similarly, in our series patients with proctocolectomy with a permanent ileostomy had better scores (mean 206.6 ± 34.22) than patients with an ileal pouch (mean 133.6 ± 59.9) as already mentioned.
CONCLUSION
Medically controlled patients with ulcerative colitis have a reasonably good quality of life (mean score 168.6 ± 56.2 vs 222.4 ± 48 in controls). The quality of life in-patients who do not respond to medical treatment is very poor (Pre-operative score 85.8 ± 39.2). The quality of life improves considerably after surgery (mean score 184.6 ± 54.9) and is comparable to medically treated group. The quality of life in-patients with ileostomy (206.6 ± 34.2) is better than patients undergoing ileoanal anastomosis with or without pouch (133.6 ± 59.9).
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