Otley A, Smith C, Nicholas D, Munk M, Avolio J, Sherman PM, Griffiths AM. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2002 Oct;35(4):557-63
BACKGROUND AND AIMS: IMPACT is a disease-specific health-related quality-of-life questionnaire developed for use in pediatric inflammatory bowel disease through a process of patient interviews and analysis of patient responses to an item-reduction questionnaire. This study sought to assess the feasibility, reliability, and validity of the instrument. METHODS: The readability statistics and number of unanswered questions were assessed among 147 patients (97 CD, 50 UC) with mean age 14.4 +/- 2.2 years (range 9.2-18.0 years) using the self-administered questionnaire. Internal consistency was assessed with Cronbach's alpha and test-retest reliability using intraclass correlation coefficient (ICC). Construct validity was based on a priori hypotheses. Mean total scores were compared by ANOVA among patients grouped according to disease activity and disease severity within the past year. RESULTS: The readability statistic showed a Flesch-Kincaid Grade level of 4.5. Only 0.68% of questions were left blank. Reliability was excellent with Cronbach's alpha = 0.96, and an ICC of 0.90 in patients with stable disease over a two-week period (n = 32). The mean total IMPACT score for patients with quiescent disease (180 +/- 32) was significantly higher (better QOL) than for those with active disease (146 +/- 31 for mild, 133 +/- 34 for moderate/severe) (P < 0.005). CONCLUSIONS: The IMPACT questionnaire is a valid and reliable reflection of health-related quality of life of older children and adolescents with both ulcerative colitis and Crohn's disease.
Loonen HJ, Grootenhuis MA, Last BF, de Haan RJ, Bouquet J, Derkx BH. Qual Life Res. Measuring quality of life in children with inflammatory bowel disease: the impact-II (NL). 2002 Feb;11(1):47-56
Inflammatory bowel disease (IBD) is a chronic debilitating disorder. Measures of quality of life are only available for adult patient populations. We developed a new disease-specific health-related quality of life instrument in Dutch for pediatric patients with IBD, called Impact-II (NL).We translated and strongly modified the original (Canadian) Impact questionnaire. It comprises 35 items in six domains. Eighty-three children (66%) completed the questionnaire, 39 children were assessed twice. Disease symptoms were recorded and disease course severity assessed through chart review. Summated disease activity scores and disease course severity scores were dichotomized into two categories. Reliability coefficients were good for five out of six domains (Cronbach's alpha ranged from 0.57 to 0.86) and measures of test-retest stability in clinically stable patients were good for all domains (intra-class correlation coefficients ranged from 0.67 to 0.91). The instrument showed good discriminant validity between symptom groups and disease course severity on all domains. Convergent validity with a validated generic instrument [TNO-AZL Children's Quality of life questionnaire (Tacqol)] showed satisfactory coefficients. In conclusion, the developed questionnaire shows good psychometric properties. Test-retest stability and responsiveness to change should be further assessed in larger patient samples. Cross-cultural translation and validation procedures into other languages are being conducted to enable international use of Impact-II.
Griffiths AM, Nicholas D, Smith C, Munk M, Stephens D, Durno C, Sherman PM. Development of a quality-of-life index for pediatric inflammatory bowel disease: dealing with differences related to age and IBD type. J Pediatr Gastroenterol Nutr 1999; 28:S46-52
BACKGROUND: A child- and adolescent-generated IBD quality-of-life index was designed to be descriptive (to be used to assess the overall impact of IBD on individual patients), and evaluative (to be used as an outcome measure in clinical trials). METHODS: Item-generation and item-reduction interviews with 82 patients with IBD aged 8 to 17 years (61 with Crohn's disease, 21 with ulcerative colitis; 36 girls, 45 boys) generated a list of ways in which their lives were affected by IBD. These issues were incorporated into an item-reduction questionnaire, which was administered to 117 patients (87 Crohn's disease, 30 ulcerative colitis). Patients indicated on a visual analog scale how important an item was to them and how often it bothered them. Mean and median importance-plus-frequency scores for each issue were calculated for the entire group and among patients in subgroups according to age and IBD type. RESULTS: Ulcerative colitis and Crohn's disease affect the lives of children and adolescents differently. Bowel symptoms are more troubling and disabling to patients with ulcerative colitis, whereas systemic symptoms and body image concerns are greater for patients with Crohn's disease. The impact of Crohn's disease on ability to function in school and leisure activities is greater. Worries about future health problems and about the effects of IBD on the family are shared. Crohn's disease and ulcerative colitis trigger emotional responses of unfairness and frustration, but anger and embarrassment are more prevalent in ulcerative colitis. Disparities between age groups are fewer and less marked than those between types of IBD. CONCLUSION: In selection of items to be retained in a pediatric IBD quality-of-life measure, the variation in concerns with disease type must be considered. A single index to assess IBD-related quality of life must include items of major importance to one subgroup of patients, even if not important to all. Alternately, a core of common concerns could be supplemented by disease-specific modules, thereby increasing the content validity of the tool for all patients.