From the Northwestern Center for Psychosocial Research in IBD http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php Copyright 2010, Center for Psychosocial Research in IBD Staff Center for Psychosocial Research in IBD Staff en-US SPHPBLOG 0.5.1 EVENT: Get Your Guts in Gear http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry090228-084936
More information is available here: http://www.ibdride.org/
]]> Support http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry090228-084936 Center for Psychosocial Research in IBD Staff Sat, 28 Feb 2009 16:49:36 GMT Social Attitudes Related to IBD Patient Outcomes http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry090228-083617 Inflammatory Bowel Diseases, and found that over 80% of study participants with IBD reported experiencing some social stigma about having IBD. Stigma has been found to affect many different groups, including people with chronic illnesses such as HIV, psoriasis, epilepsy, and mental illness. This study is the first of its kind in examining the role that stigma may play in the quality of life of people with IBD. The next phase of this research is underway to better understand IBD stigma.

The article may be found here (login account required):
http://www3.interscience.wiley.com/jour ... 1/abstract

]]> Research News http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry090228-083617 Center for Psychosocial Research in IBD Staff Sat, 28 Feb 2009 16:36:17 GMT DID YOU KNOW SERIES: binge drinking associated with IBD http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080410-114156 http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080410-114156 Center for Psychosocial Research in IBD Staff Thu, 10 Apr 2008 18:41:56 GMT notice of LIVE teleconference http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080404-125531
The segment features Dr. Ed Loftus, Jr., from Mayo Clinic.

See www.CCFA.org for more information...]]> Other IBD News http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080404-125531 Center for Psychosocial Research in IBD Staff Fri, 04 Apr 2008 19:55:31 GMT Exerise May Help Crohn's Disease http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080329-172956
The findings of the study showed that participants who exercised reported improved symptoms and gave higher ratings for quality of life - compared to those in the "life as usual" or non-exercise group, who reported worsening of symptoms.

"Exercise benefits almost everyone and chronic disease patients are no exception," study co-author Dr. Wanda Millard told Reuters Health. However, Millard cautioned that this and other studies of exercise and Crohn's Disease have included only patients in remission or with mild symptoms."

If you would like more information, discuss the benefits of mild exercise with your gastroenterologist. As always, always check with your doctor beginning any exercise program. ]]> Exercise & Activity http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080329-172956 Center for Psychosocial Research in IBD Staff Sun, 30 Mar 2008 00:29:56 GMT IBD Mythbusters #2: Tension, anxiety, or “nerves” cause IBD http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080319-070516
Some people confuse IBD with Irritable Bowel Syndrome (IBS), which has been called spastic colitis or spastic colon in the past. IBS is caused by a disturbance of function of the colon, and does not involve inflammation in the intestines like with IBD. The cause of IBS is also poorly understood, and in some cases emotional factors can contribute to symptoms. ]]> Psychology http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080319-070516 Center for Psychosocial Research in IBD Staff Wed, 19 Mar 2008 14:05:16 GMT Research Buzzword: "Health Related Quality of Life" http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080315-051616
Quality of life (QOL) has been defined as the “reflection of the way that patients perceive and react to their health status and to other, non-medical aspects of their lives”

Health Related Quality of Life (HRQOL) more specifically examines life satisfaction or happiness as it is affected by illness. HRQOL can be measured either in personal/experiential ways or using a more scientific/normative approach. A personal and experiential definition of HRQOL is "optimum levels of physical role and social functioning, including relationships and perceptions of health, fitness, life satisfaction and well-being. It should also include some assessment of the person's level of satisfaction with treatment, outcome, and health status and with future prospects" (Bowling, 1995a: 2).

No true consensus has been reached about the definition of QOL/HRQOL. However, there are hundreds of validated surveys and measurements of QOL/HRQOL that are used in thousands of research studies. So how does this apply to IBD research? What contributes to HRQOL, both positively and negatively?

HRQOL is influenced on several social levels, so that the model used to describe this has been likened to an onion - think a series of overlapping layers with the physical, mental, and spiritual well-being of the individual at the center. The next layer is family and other extended social networks including friends and partners, with the norms and obligations that come with them. Next is the community or societal level, which includes work, income, and housing. Finally, at the outer layer is the "Global Village" that encompasses cultural influences, human rights, and social welfare. One can conclude then that HRQOL is influenced, at least partially, by our social world. So how people present (or choose not to present) themselves and their illness to others can significantly impact their HRQOL. But this is just part of the equation. How others interpret IBD is another important factor, since the only thing we can control is our reactions to others, not others reactions to us. This is a topic that will be addressed in future entries.

A consistently important finding is that patients who are involved in medical decisions about their treatment are able to take their personal HRQOL fully into account. Often in IBD treatment, a balance needs to be found between the positive and negative aspects of treatment options. Negative impact on HRQOL from a particular treatment may outweigh the therapeutic benefits, especially if the treatment significantly impacts emotional and physical functioning. This is where the patient-physician relationship becomes very important, where the patient is comfortable enough to voice concerns and be part of a health care team versus the passive receiver of medical treatments.

Related to this, research has shown that people diagnosed with IBD voice several concerns about their illness. In the late 1980's, the "Rating Form of IBD Patient Concerns (RFIPC)" was developed at the University of North Carolina by Dr. Douglas Drossman and colleagues. They decided to design the RFIPC based on anecdotal patient reports of worries and concerns to gauge how common these concerns were in the greater IBD patient population. The RFIPC is a 25-item questionnaire that measures four indexes of concerns of IBD patients: impact of disease, sexual intimacy, complications of disease, and body stigma. The survey has been validated and used in several research studies since then.

The greatest concerns among patients included:
the uncertainty of having IBD
effects of medication
threat of surgery or having an ostomy
developing cancer
decreased energy levels
being a burden to others
body-image


How does this relate to HRQOL in IBD? The greater the worries a patient experiences about having IBD the poorer their quality of life will be, regardless of symptom severity. Disease activity does not appear to be a consistent factor in predicting the level of disease-related concerns in IBD patients, so people who have very severe symptoms may not always report the most concerns. Crohn's Disease and Ulcerative Colitis patients typically have similar scores on the RFIPC though some group differences exist when analyzing specific types of concerns.And finally, women tend to report greater concerns than men. So this tells us that psychological factors, such as worry or concerns about illness, may contribute to poorer outcomes; making this an important area for continued research and intervention.]]> Psychology http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080315-051616 Center for Psychosocial Research in IBD Staff Sat, 15 Mar 2008 12:16:16 GMT IBD Mythbusters #1: IBD is contagious... http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080312-155136 General Info http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080312-155136 Center for Psychosocial Research in IBD Staff Wed, 12 Mar 2008 22:51:36 GMT New Series: IBD Mythbusters http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080312-155102 ]]> General Info http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080312-155102 Center for Psychosocial Research in IBD Staff Wed, 12 Mar 2008 22:51:02 GMT Welcome to IBD R&D http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080312-085313 Center Announcements http://www.ibdpsych.org/apps/psychibd/sphpblog/index.php?entry=entry080312-085313 Center for Psychosocial Research in IBD Staff Wed, 12 Mar 2008 15:53:13 GMT