Upcoming IBD research presentations

Here are two IBD research papers that will be presented at an upcoming Quality of Life conference this Fall in Toronto, ON, Canada.

Sirois, F. M., & Wolfe, B. (accepted). A continuum of control: Implications for quality of life in patients with inflammatory bowel disease (IBD). Paper accepted for presentation at the 14th annual conference of the International Society for Quality of Life Research, Toronto, ON.

ABSTRACT
AIMS: For individuals with chronic disease perceiving control over aspects of one's daily life can have implications for disease management and health-related quality of life (HRQoL). Expectations for control over disease-specific domains which are not amenable to control may result in helplessness, whereas recognition of the uncontrollable aspects of illness coupled with managing daily life within disease related limitations can aid adaptation and improve HRQoL. Living with IBD can be particularly challenging, yet few investigations have examined how shifts in health-related control perceptions may impact HRQoL. To address this issue we used a mixed methods approach to capture patients' control perceptions from their subjective experiences of the daily impact of IBD, and then examined how HRQoL dimensions varied as a function of differing degrees of perceived control.
METHODS: 292 people with IBD completed a survey including measures of health status (IBDQ-B), functioning, illness perceptions, HRQoL, and the qualitative question "How has IBD affected your daily activities?" A content analysis of responses yielded 104 cases (Mean age = 36 ±11; 71% female) reflecting 3 themes concerning perceived control of IBD: taking (n=24) vs losing control (n=43), neutral control (no loss or gain; n=38). Differences in HRQoL and illness-related cognitions were examined for the 3 groups.
RESULTS: The taking control group scored higher on the IBDQ-B, global health rating, functioning, life satisfaction, illness acceptance, and planning coping, and lower on impact of IBD and helplessness than the other 2 groups with the neutral group scoring intermediately. There were no differences in time since diagnosis, fatigue, or comorbid conditions. Group differences remained after controlling for disease severity for all variables except global health, functioning, and coping.
CONCLUSIONS: By examining patients' subjective accounts of the daily impact of IBD we found that as perceived control varied along a continuum, so did their HRQoL. The implications for understanding and assessing response shifts are discussed.
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Wolfe, B., & Sirois, F. M. (accepted). Beyond standard quality of life measures: The subjective experiences of living with inflammatory bowel disease. Paper accepted for presentation at the 14th annual conference of the International Society for Quality of Life Research, Toronto, ON.

ABSTRACT
Aims: While there are advantages and disadvantages to both generic and disease specific measures of health-related quality of life (HRQoL), one criticism has been that such measures may not take patients' subjective experiences into account. Research has also indicated that when trying to understand inflammatory bowel disease (IBD) patients' HRQoL, generic (e.g., SF-36) and disease-specific measures (e.g., IBDQ) may be complementary rather than interchangeable. However, whether they fully represent all dimensions of patients' HRQoL has not been fully explored. The purpose of this study was to examine IBD patients' subjective experiences of the daily impact of IBD, and categorize dimensions of their QoL affected by IBD, as identified by the patients themselves.
Methods: 292 patients (Mean age = 36 ±12; 75% female) with IBD provided answers to qualitative questions, including, "How has IBD affected your daily activities?" A content analysis of the qualitative questions was conducted using NVivo 2.0; meaning units were inductively tagged for common themes and placed into more general conceptual categories reflecting dimensions of their HRQoL.
Results: The analysis yielded five broad dimensions of HRQoL (with sub-categories) that the patients revealed had been affected by IBD. These dimensions included Physical (Functioning, Energy/Vitality, Pain), Emotional, Social, Cognitive (Functioning, Attending to Disease), and Self-Regulation (Taking Control, Loss of Control, and Neutral).
Conclusions: While the results of this analysis replicated some of the dimensions included in standard measures for this disease population (i.e. SF-36, IBDQ), these findings also revealed dimensions of HRQoL not previously discussed within other measures. Namely, the cognitive and self-regulation components of HRQoL have not been extensively examined. The apparent gaps in assessing patients' subjective experiences with their chronic disease, as evidenced by our findings, also has the potential to inform research with other illness populations.

Congratulations Jenn!

Jenn Voth successfully defended her MA thesis on Friday Aug. 10. Her thesis titled "Illness attributions, perceptions of stigma and coping strategies: Adjusting to inflammatory bowel disease" examined how perceptions (own and others) about the cause of IBD affect well-being and adjustment to the disease.

Jenn did an oustanding job defending her thesis with her mother, brother and sister in-law, and another lab member, Barat, in attendance. Afterwards Barat helped us start a new lab tradition, the "Cup of Knowledge" by presenting Jenn with a beautful stailness steel mug and a well-earned congratulatory toast. The mug will be ingraved soon to commemorate both Jenn's success and what we hope will be an ongoing Lab tradition. Check back for pictures in a few weeks......