Quality of life in inflammatory bowel diseases : aspects on interventions and unconventional treatments

Crohn’s disease (CD) and ulcerative colitis (UC) are chronic inflammatory bowel diseases (IBD) of unknown aetiology and characterized by periods of remission and exacerbation. Disabling bowel symptoms, untoward effects of treatments and interventions, the risk of developing colorectal cancer in longstanding UC, ignorance of the disease, disappointment in conventional medicine, all these features may influence the patient s health related quality of life (HRQOL) in various ways.

The aims of this study were to assess the attitudes to and the use of complementary and alternative medicine (CAM) among patients with IBD, and to evaluate interventions such as a group based educational programme, colonoscopic surveillance, treatment with leukocyte apheresis and its effect on HRQOL, functional health status, general state of health as well as anxiety and coping ability in patients with IBD.

Two hundred and eighty-nine IBD patients in four different countries answered a self-administered questionnaire concerning the use of and attitudes to CAM. Fifty-one percent used some form of alternative therapy. The usage was higher in North America than in Europe. The six most commonly used therapies were: exercise (28%), prayer (18%), counselling (13%), massage (11%), chiropractic (11%) and relaxation (10%). Only 7% used acupuncture or homeopathy and 5% used herbal medicine.

Forty-one patients with longstanding, extensive/total UC in remission undergoing colonoscopic colorectal cancer (CRC) surveillance were compared with two groups of UC patients not undergoing surveillance. Four self-administered questionnaires were used: Sickness Impact Profile (SIP), Health Index (HI), State Trait Anxiety Inventory (STAI) and Sense of Coherence (SOC). No significant differences between the groups studied were found using any of the questionnaires nor before or after the colonoscopy.

Thirty-four UC patients underwent weekly one hour apheresis sessions with a selective leukocyte adsorptive device for five consecutive weeks. HRQOL was measured by the Inflammatory Bowel Disease Questionnaire (IBDQ) before, at week 3, and after treatment. The mean IBDQ increased from 138 (range 97-208) at start to 154 (95-214) at week 3 (p=0.001) and 163 (117-216) after treatment (p=0.0006). When analysed separately, the IBDQ bowel, systemic and emotional dimensions improved significantly during the study.

Forty-four IBD patients in remission or with low disease activity were randomized to a group-based medical and psychological/psychosocial intervention or to a control group. The intervention comprised nine weekly sessions with lectures and psychological/psychosocial group treatment. HRQOL was measured by the IBDQ and coping by the SOC before, at 6 and 12 months. The control patients received conventional medical and psychosocial treatment. No significant change was observed for IBDQ before (173.9) and after the intervention at month 6 (175.7), or at month 12 (171.8) or when comparing intervention (171.8) and controls (173.7) at month 12. Similarly, no significant differences in SOC scores were observed. However, the mean values from a visual analogue scale (VAS) and the results from a content analysis showed a positive trend.

There is an increased interest in CAM among IBD patients, and this may reflect the patients disappointment of conventional medicine. Complicated and invasive interventions such as colonoscopic surveillance (for detecting CRC), and selective leukocyte apheresis do not seem to impair HRQOL in UC patients. A group based medical and psychological/psychosocial intervention was highly appreciated in IBD patients, but no effect on HRQOL could be demonstrated by using standard HRQOL or coping measurements.

List of scientific papers

I. Rawsthorne P, Shanahan F, Cronin NC, Anton PA, Lofberg R, Bohman L, Bernstein CN (1999). An international survey of the use and attitudes regarding alternative medicine by patients with inflammatory bowel disease. Am J Gastroenterol. 94(5): 1298-303.
https://pubmed.ncbi.nlm.nih.gov/10235210

II. Oxelmark L, Nordstrom G, Sjoqvist U, Lofberg R (2004). Anxiety, functional health status, and coping ability in patients with ulcerative colitis who are undergoing colonoscopic surveillance. Inflamm Bowel Dis. 10(5): 612-7.
https://doi.org/10.1097/00054725-200409000-00017

III. Oxelmark L, Hilleras P, Dignass A, Mossner J, Schreiber S, Kruis W, Lofberg R (2006). Quality of life in patients with active ulcerative colitis treated by selective leukocyte apheresis. Scandinavian Journal of Gastroenterology. [Accepted]
https://doi.org/10.1080/00365520600881060

IV. Oxelmark L, Magnusson A, Lofberg R, Hilleras P (2006). Group-based intervention in IBD-patients - effects on quality of life. [Submitted]