The rating form of IBD patient concerns: a new measure of health status.

Abstract

Health status assessment for persons with chronic illness includes not only symptoms, but also an appraisal of the psychosocial concomitants of illness. In this national study of persons with inflammatory bowel disease (IBD), we standardized a disease-specific 25-item measure of perceived health status: the Rating Form of IBD Patient Concerns (RFIPC). Factor analysis yielded four indices: a) impact of disease (e.g., being a burden, loss of energy, loss of bowel control); b) sexual intimacy; c) complications of disease (e.g., developing cancer, having surgery, dying early); and d) body stigma (e.g., feeling dirty or smelly). A higher level of IBD concerns was associated with greater disease severity, female gender, and lower educational status. When controlling for these factors, as well as disease type and age, we found that concerns about: a) impact of disease was positively associated with poorer perception of health and well-being, greater psychological distress (SCL-90), and poorer daily function (Sickness Impact Profile) (p less than 0.0001); b) sexual intimacy was related to poorer psychologic function (p less than 0.01); and c) complications of disease was related to several measures of poorer daily function (p less than 0.0001 to 0.01). This standardized measure of the worries and concerns of persons with IBD may be used in clinical care and research to evaluate the effects of interventions on IBD patient outcomes.

The development and validation of a new coeliac disease quality of life survey (CD‐QOL)

“…For the BSI, this included low (<48), medium (48-60) or high (>60) psychological distress. For daily abdominal pain, this included low (<10), medium (10)(11)(12)(13)(14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25) or high (>25) abdominal pain. For each of these measures, the mean CD-QOL of subjects in each group (low, medium, and high) was compared.…”

“…The methodology was similar to that used by our group to create other QOL measures. [9][10][11] Furthermore, given the clinical heterogeneity of this population, we focused on developing and standardizing a measure that has clinical relevance, by targeting both those patients in the community who were members of local Coeliac disease support groups and patients seeking treatment for their symptoms at a major referral centre for coeliac disease. In this article, we report the results of a study to develop and assess the psychometric properties of the CD-specific QOL measure (CD-QOL) including conceptual and measurement model (subscale structure), reliability (internal consistency) and validity (content validity as well as convergent and discriminant construct validity).…”

Comparison Of iNfliximab and ciclosporin in STeroid Resistant Ulcerative Colitis: pragmatic randomised Trial and economic evaluation (CONSTRUCT)

“…18, [67][68][69][70][71] The most widely used is the McMaster Inflammatory Bowel Disease Questionnaire. 18,67,68,72,73 As it had not been validated for the UK, we previously conducted a development and validation study to anglicise it as the UK-IBDQ.…”

Assessment of the level of knowledge of patients from selected Warsaw hospitals about Crohn’s disease

“…A vast majority of the available Polish and world publications relate to an assessment of the quality of life of patients with non-specific inflammatory bowel disease [19][20][21][24][25][26][27][28][29][30]. A significantly smaller number of publications are devoted to an analysis of the level of patient knowledge of Crohn's disease [18][19][20].…”