Knowledge, Quality of Life, and Use of Complementary and Alternative ...

C 2004) Digestive Diseases and Sciences, Vol. 49, No. 10 (October 2004), pp. 1672–1676 (°

Knowledge, Quality of Life, and Use of Complementary and Alternative Medicine and Therapies in Inflammatory Bowel Disease: A Comparison of Chinese and Caucasian Patients RUPERT W. L. LEONG, MBBS, FRACP,*† IAN C. LAWRANCE, MBBS, FRACP, PhD,‡ JESSICA Y. L. CHING, BN,* CARRIAN M. Y. CHEUNG, BN,* SARA S. L. FUNG, BN,* JENNY N. C. HO, BN,* JILLIAN PHILPOTT,‡ ALISON R. WALLACE,‡ and JOSEPH J. Y. SUNG, MD, PhD*

Inflammatory bowel disease is rare in the Chinese population, which may result in limited support, misinformation, and unalleviated fears and adversely affect quality of life (QOL). This study compared the inflammatory bowel disease (IBD)-related knowledge, QOL, and use of complementary and alternative medicines and therapies (CAMT) in two contrasting IBD populations. Chinese and Caucasian IBD patients completed a questionnaire on IBD knowledge and CAMT usage. QOL was evaluated using the validated Inflammatory Bowel Disease Questionnaire. One hundred sixty-two IBD patients were recruited, 81 Chinese and 81 Caucasian. The IBD knowledge score was higher in Caucasian than in Chinese IBD patients (median difference, 6.5; P = 0.001) and was independent of education and occupation. Twenty-one-percent of Chinese subjects incorrectly identified their IBD type (0% in the Caucasian group; P < 0.001). QOL was higher in the Chinese than the Caucasian group, but not significantly different after adjusting for disease activity. QOL was unassociated with IBD knowledge. The overall use of CAMT was similar in both groups (33% of Chinese and 37% of Caucasian patients) and similar for Crohn’s disease and ulcerative colitis. IBD-related knowledge was inferior in Chinese compared to Caucasian IBD patients. Health-related QOL is unlikely to be greatly influenced by disease-related knowledge or education. A high proportion of Chinese and Caucasian IBD patients uses CAMT. KEY WORDS: Asia; inflammatory bowel disease; questionnaire; knowledge; quality of life; complementary and alternative medicine.

There is increasing acceptance that patients want to improve their disease-related knowledge in order to Manuscript received January 13, 2004; accepted May 12, 2004. From the *Department of Medicine and Therapeutics, Chinese University of Hong Kong, Prince of Wales Hospital, Hong Kong, †Department of Medicine, University of New South Wales, and Department of Gastroenterology Bankstown Hospital, Sydney, Australia, and ‡School of Medicine and Pharmacology, University of Western Australia, Fremantle Hospital, Perth, Australia. Address for reprint requests: Dr. Rupert W. L. Leong, University of New South Wales, Department of Gastroenterology, Bankstown Hospital, Bankstown, Sydney, NSW 2200, Australia; rupertleong@ unsw.edu.au.

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participate in the management of their chronic illnesses (1). Being well informed about inflammatory bowel disease (IBD) may allow patients to develop coping skills and improve their compliance, management, and quality of life (QOL) (2). Smart et al. demonstrated that providing Crohn’s disease (CD) patients with diseaserelated information booklets reduced their consultations and decreased their anxiety levels (3). However, other studies concluded that the level of disease-related knowledge did not correlate with QOL (4) and that improving knowledge may even worsen their QOL (5). Some previous studies used a nondiscriminating knowledge scoring Digestive Diseases and Sciences, Vol. 49, No. 10 (October 2004)

C 2004 Springer Science+Business Media, Inc. 0163-2116/04/1000-1672/0 °

CHINESE AND CAUCASIAN IBD KNOWLEDGE

system or unvalidated QOL measurement (4). Therefore the association between knowledge and QOL in IBD remains unresolved. IBD affects people of all nationalities, but there is vast global heterogeneity in its incidence and prevalence (6). IBD is rare in Asia, with an incidence rate a fifth to a tenth that in Western countries. However, the incidence of IBD in Asia is rapidly increasing (7). The previous rarity of IBD in Asia has resulted in limited community exposure to IBD, limited resources and not-well-developed support groups. These factors may result in a low level of IBD knowledge, perpetuation of misconceptions, uncertainty about the course of illness, unalleviated fears of complications, unawareness of treatment options, and even a lack of faith in the ability of Western medicine to treat this disease. In contrast, IBD is more prevalent in Western nations and there are more opportunities for IBD sufferers to improve their IBD knowledge. This prospective comparative study of Chinese IBD patients in Hong Kong (HK) and Caucasian patients in Australia aimed to examine the relationship between knowledge and QOL in these contrasting societies. In addition, we explored the use of complementary and alternative medicines and therapies (CAMT) and whether culture and the level of disease-related knowledge influenced the use of CAMT. MATERIALS AND METHODS Patients. Consecutive IBD patients 18 to 75 years of age were recruited prospectively from the IBD ambulatory clinics of two institutions. The Prince of Wales Hospital, Shatin, HK, is a 1300-bed hospital and Fremantle Hospital is a 450-bed hospital in Perth, Australia. Only Chinese and Caucasian IBD patients were recruited from the two sites, respectively. The study period was from February 2002 to May 2002 and the recruitment method and study design were identical for both hospitals. The diagnosis of IBD had to be definite and was made in accordance with previously established international criteria (8) based on clinical, endoscopic, histopathological, and radiological findings. The diagnosis of IBD was of at least 6 months’ duration, with strict exclusion of infective enterocolitis, Behcet’s disease, microscopic colitis, and indeterminate colitis. Most patients were in remission. A single gastroenterologist (HK, R.W.L.; Australia, I.C.L.) was responsible for recruitment from each center. Patients who could not comprehend questionnaires or were unable to complete at least 50% of the questionnaire were excluded from the study. Expressed consent to perform the study was obtained from every patient. Knowledge Questionnaire. A 21-question IBD-related knowledge questionnaire (Appendix) was devised through a question selection process by a focus group comprising of gastroenterologists, a research nurse, and IBD patients. Questions that were thought to have a high discriminatory value for knowledge but to be uninfluenced by culture or type of IBD were included. A pilot questionnaire tested for ambiguity and ease Digestive Diseases and Sciences, Vol. 49, No. 10 (October 2004)

of completion. The final version of the questionnaire evaluated general knowledge of IBD: the IBD type they had (CD or ulcerative colitis [UC]), risk factors (hereditary, contagiousness, smoking), clinical manifestations (organ involvement), and treatment (steroids, stoma, traditional Chinese medicines). The second part of the questionnaire assessed the use of CAMT and identified the sources of information obtained on IBD. Answers were binary (correct/incorrect; 9 questions) or according to a 7-point Likert scale (strongly agree to strongly disagree; 12 questions). The composite score ranged from 12 to 93. The questionnaire was translated from the English version to Chinese (Cantonese) and verified independently by bilingual staff members familiar with IBD. The questionnaire was self-administered and distributed at the ambulatory IBD clinic. Quality of Life and Disease Activity Index. QOL was assessed with the Inflammatory Bowel Disease Questionnaire (IBDQ), a validated 32-item disease-specific health-related QOL questionnaire originally developed in English (9) and validated in Chinese (10). A higher IBDQ score indicated a better QOL. IBD activity was assessed with the Crohn’s Disease Activity Index (CDAI) for CD (11) and the Colitis Activity Index for UC (12). A CDAI score