Despite many scoring indices of CD, there is a lack of more global assessment tools for the evaluation of the total disease impact on the gut. Quality of life was assessed using IBDQ. Conclusion A signifi cant negative correlation between the LI and quality of life, measured by IBDQ, was found in our study, suggesting that the LI could resemble more global features of the disease, besides inflammatory activity of the gut. A distinguishable feature of CD is a transmural intestinal inflammation of the gastrointestinal tract anywhere from the mouth to the anus [ 2 ]. CD usually presents early in life and can disturb social life, learning, career, and family planning [ 3 ]. Diagnostic delay is common in CD, and the inflammation frequently presents many years before the actual diagnosis is made [ 4 ].
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We hypothesized that psychosocial variables, namely perceived stress, perceived social support, and knowledge, would be associated with HRQOL among individuals with IBD. Perceived stress, perceived social support, and knowledge of IBD were measured using standardized questionnaires. Clinical and demographic variables were gathered through a item study questionnaire. Univariate analyses were conducted to determine which variables were associated with HRQOL, and those that were statistically significant were entered into a multivariate regression model.
Results: Results from univariate analyses revealed significantly lower HRQOL in individuals who: reported higher perceived stress, higher number of previous hospitalizations and relapses, lower perceived support, lower income, were unemployed, and were female. Conclusion: Individuals with IBD who report higher perceived stress, lower perceived social support, greater number of relapses, or are female may be at increased risk for decreased HRQOL.
Prospective studies should investigate how interventions addressing these factors may lead to improved HRQOL. HRQOL is generally defined as a multidimensional concept that incorporates the physical, emotional, and social features of health perception and health functioning. For patients with IBD, such stressors may include abdominal discomfort, rectal bleeding, diarrhea, fecal urgency, impaired appetite, weight loss, and need for long-term immunosuppressant medication use, hospitalization, or surgery, among others.
For example, factors previously found to be consistently associated with HRQOL include male gender, clinical symptoms, severity of disease, surgical interventions, recurrences per year, and co-existing disease.
The aim of this study was to simultaneously evaluate, in a single cohort of patients with IBD, multiple psychosocial factors found to influence HRQOL across other studies, namely perceived stress, social support, and IBD-specific knowledge i.
Individuals hospitalized at the time of the study were excluded. Participants who met the study criteria volunteered to be included in the study by electronically signing the informed consent form and completing the online survey.
Although there is no cut-off value indicated, Cohen et al. Scores range from 27 to 84, with higher scores indicating higher levels of perceived social support. Disease-related knowledge has been defined as information acquired about a certain disease on both social and medical aspects. Questions included information on the following 16 variables: gender, ethnicity, age, annual income, state of residence, employment status employed, unemployed , schooling status student, not a student , highest level of education completed high school, college, graduate school, etc.
CD , years with IBD, number of hospitalizations due to IBD within the past year, number of surgeries for IBD within the past year, number of IBD relapses within the past year, desire to seek psychological therapy, and prior psychological therapy. Factors which were statistically significant in the univariate analyses were then included in a multivariate regression model using the enter method standard regression , with the IBDQ score as the dependent variable. Tests of significance were two-tailed, with an alpha level of 0.
The mean participant age was Additional data on sample characteristics are presented in Table 1. The mean score for the study sample was Further information on scale scores, including SD, median, and range of each of the scores, is provided in Table 2. Univariate analyses of all the psychosocial, clinical, and demographic variables revealed several significant associations.
Specifically, individuals who had higher perceived stress, lower perceived support, higher number of previous hospitalizations, higher number of relapses, lower income, were unemployed, and were female had lower scores on the IBDQ Table 3.
These results are presented in greater detail in Table 4. Most patients with IBD have impaired HRQOL when compared to the normal healthy population, particularly patients with active disease and those who have had surgery. Effective coping has been found to play a significant role in how patients with IBD adjust to their illness 25 , 28 which reinforces the importance of more effective coping methods for patients with IBD.
As such, one potentially helpful method of reducing stress and enhancing coping methods in this population is early referral of individuals with IBD to clinical health psychologists. Better use of and more reliance on health psychologists, among other interventions, could be valuable and possibly synergistic in improving coping techniques in a subset of individuals with IBD, thereby leading to decreased perceived stress and better HRQOL.
It has been previously shown that social support facilitates coping with illness and stress management in patients with IBD. It has been suggested that referral to IBD support groups may be beneficial in this regard 25 ; this may be considered in patients who have been newly diagnosed with IBD or for those who are emotionally struggling with their diagnosis.
Furthermore, as family support was previously found to be the most valuable type of support, some patients with IBD may benefit from involving family members in their treatment. This is essentially in agreement with past work, wherein one of the most important HRQOL determinant for patients with IBD was the presence of disease activity.
One such precaution is greater emphasis on stress management. There have been various hypotheses as to why women with IBD tend to report lower HRQOL, one being that psychological factors generally play a greater role in females than males. However, past studies have found that patient knowledge about chronic illness has been effective in reducing anxiety and perceived stress and may potentially improve health-related quality of life and symptoms of depression.
It should be noted that the mean knowledge score for our sample was relatively high This study has several strengths. It is the first study to simultaneously examine the relationship between numerous psychosocial, clinical, and demographic predictors of HRQOL in individuals with IBD. The sample was recruited online, and as a result, it may be more representative of upcoming generations of patients with IBD who are more dependent on and better informed as a result of online data and support groups.
Further, although this study was based on non-random sampling, this recruitment method enabled the incorporation of a fairly diverse sample of individuals living across the US data not shown with a wide spectrum of clinical and demographic features.
In addition, although the three psychosocial factors we choose have been assessed individually in other studies of patients with IBD, this study is unique in that it is the first wherein these three psychosocial factors have been assessed in the same cohort of patients.
Our study also has several limitations. There were a few confounding variables that we were unable to adjust for, such as endoscopic activity or severity of IBD, medical and psychiatric comorbidities, including anxiety and depression, and the influence of dispositional characteristics. Convenience non-probability sampling was used for recruitment of participants. Small sample size did not allow for stratification of our sample based on IBD type nor for more complex multivariate analyses; however, it should be noted that there was no significant difference between prior surgical or hospitalization rates between individuals with UC and CD in our sample, and that type of IBD was not significantly associated with IBDQ scores.
Mood-altering medications such as corticosteroids were not adjusted for, although it is unknown how and to what degree past as compared to ongoing use of such medications would affect present HRQOL. We cannot verify with certainty that participants were diagnosed with IBD by a medical specialist; however, the likelihood of participants not having IBD would seem low since all individuals were recruited from established IBD support and advocacy groups and participated voluntarily without remuneration.
Given the disproportionately small number of men in this study, the results herein should not be generalized to men unless validated by larger studies with a more proportionate gender ratio.
Lastly, our results may not be broadly generalized to all individuals with IBD given that individuals herein were ambulatory i. This study adds insight, particularly with respect to psychosocial variables, to the scientific literature about factors that may influence HRQOL in patients with IBD. It suggests that increased perceived stress, decreased social support, higher number of relapses, and possibly being female may be associated with worse HRQOL.
For now, this can perhaps be best achieved, particularly with respect to psychosocial factors, by early referral of patients to clinical health psychologists or other mental health professionals who specialize in chronic medical disorders.
Herein, patients with IBD can learn techniques that can help reduce their levels of perceived stress, obtain supplementary social and emotional support, and discover how to better adjust to and cope with their disease. Conflict of interest None. The authors would like to thank Drs. Terece S. Bell and Nicolas Noviello for their support and guidance on this project.
Inflammatory Bowel Disease Questionnaire (IBDQ)
We hypothesized that psychosocial variables, namely perceived stress, perceived social support, and knowledge, would be associated with HRQOL among individuals with IBD. Perceived stress, perceived social support, and knowledge of IBD were measured using standardized questionnaires. Clinical and demographic variables were gathered through a item study questionnaire. Univariate analyses were conducted to determine which variables were associated with HRQOL, and those that were statistically significant were entered into a multivariate regression model. Results: Results from univariate analyses revealed significantly lower HRQOL in individuals who: reported higher perceived stress, higher number of previous hospitalizations and relapses, lower perceived support, lower income, were unemployed, and were female. Conclusion: Individuals with IBD who report higher perceived stress, lower perceived social support, greater number of relapses, or are female may be at increased risk for decreased HRQOL.
Crohn's Disease Activity Index
It was developed and validated by Guyatt et al [ 14 ]. It contains 32 questions, which are divided into four health domains: bowel symptoms 10 questions , systemic symptoms 5 questions , emotional function 12 questions , and social function 5 questions. For each question there are graded responses on a 7-point Likert scale, ranging from 1 representing the "worst" aspect to 7 representing the "best" aspect. Thus, the total IBDQ score ranges from 32 to , with higher scores reflecting better well-being. Mean score changes of 16 to 30 points have been linked to changes in therapy.