The IMPACT Questionnaire: A Valid Measure of Health-Related Quality of Life in Pediatric Inflammatory Bowel Disease

Otley, Anthony; Smith, Claire; Nicholas, David; Munk, Marla; Avolio, Julie; Sherman, Philip M.; Griffiths, Anne M.

doi:10.1097/00005176-200210000-00018

Cited by 234 publications

(254 citation statements)

References 16 publications

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“…In order to asses this burden the IMPACT questionnaire, a disease-specific measure of health related quality of life (HRQOL), was developed and validated for use in children and youth with IBD ages 10 to 18 years inclusive [43,44] . One study reported that the majority of patients perceived an improvement in HRQOL within 1 year of diagnosis and this improvement was in keeping with the overall improvement in disease severity [45] .…”

Section: Quality Of Life and Psychosocial Issuesmentioning

confidence: 99%

Special issues in pediatric inflammatory bowel disease

Dubinsky¹

2007

WJG

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The incidence of pediatric inflammatory bowel disease (IBD) is rising and recent advances in diagnostics and therapeutics have improved the care provided to these children. There are distinguishing features worth noting between early onset and adult onset IBD. Physical and psychosocial development remains a critical target for the comprehensive management of pediatric IBD. Children are not just little adults and consideration must be given to the stages of development and how these stages impact disease presentation and management. The final stage will be the transition from pediatric care to that of adult oriented care and special consideration must be given to make this a successful process. This review highlights special considerations in the management of the child with IBD.

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Section: Quality Of Life and Psychosocial Issuesmentioning

confidence: 99%

Special issues in pediatric inflammatory bowel disease

Dubinsky¹

2007

WJG

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“…Otley et al (17) found significantly lower total Impact scores for children with more severe or active disease. Our work extends that work by showing the association most strongly with well-being and symptom scores and how these clinical variables appear to affect social and psychological functioning.…”

Section: Discussionmentioning

confidence: 95%

“…We used the Impact-II Questionnaire developed by Griffiths, Otley, et al (14,17) to examine aspects of QoL in IBD-specific areas in children 8 years and older. As noted above, this measure consists of 35 items, grouped into 6 domains.…”

Section: Ibd-specific Quality Of Lifementioning

confidence: 99%

“…As noted above, this measure consists of 35 items, grouped into 6 domains. The Impact Questionnaire has high internal reliability for the measure in general (0.96) (17) and for the 6 domains (Cronbach α >0.70 for all but body image and treatment-related concerns) (19). The Impact-II uses a visual analog scale for all answers, in which each question is oriented with higher scores to the right.…”

Section: Ibd-specific Quality Of Lifementioning

confidence: 99%

“…The measure indicates differences by condition, with those with CD having greater concerns about body image, fatigue, and interference with usual daily activities and those with UC raising more concerns about bowel symptoms and noting a broader array of emotional responses (14). This instrument has demonstrated good face validity (15), but has performed little further examination of the domains or comparison with other measures of HRQoL, other than a study of 42 Dutch children with IBD showing correlations between 0.45 and 0.84 for the domain scales with a generic HRQoL measure (16) and another study correlating the emotional domain with related domains on the Piers-Harris and the Child Health Questionnaire (17).…”

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confidence: 99%

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Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics

2009

Primary Health Care

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Objective-To extend development of a pediatric inflammatory bowel disease (IBD) healthrelated quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables.Patients and Methods-Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures.Results-We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL.Conclusions-This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators. KeywordsCrohn disease; Ulcerative colitis; Well-being; Disease activity; Functional status © 2008 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition Address correspondence and reprint requests to James Perrin, MD, 50 Staniford Street, Suite 901, Boston, MA 02114 (jperrin@partners.org). The authors report no conflicts of interest. The goals of this study, involving a consortium of pediatric IBD centers, were to extend evaluation of the Impact Questionnaire in a larger population and through factor analysis. We expected that confirmatory factor analysis would support the original 6 domains proposed by the developers of the measure. In addition, we compared the IBD-specific QoL findings with those on a more generic HRQoL measure and with measures of severity of IBD, as further validation of the measure. We hypothesized that the IBD measure would correlate well with broader measures of HRQoL. Furthermore, we expected that children and adolescents with more severe or active disease would report lower QoL. Based on previous research, we also expected that subjects with CD would report worse HRQoL. NIH Public Access PATIENTS AND METHODSThis study sampled children diagnosed with UC or CD followed at 1 of 6 pediatric gastroenterolog...

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Guidelines for the management of growth failure in childhood inflammatory bowel disease

Heuschkel

Salvestrini

Beattie

et al. 2008

Inflammatory Bowel Diseases

207

111

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Around 1 in 4 patients with inflammatory bowel disease (IBD) present in childhood, the majority around the time of their pubertal growth spurt. This presents challenges over and above those of managing IBD in adults as this period is a time of dramatic psychological and physical transition for a child. Growth and nutrition are key priorities in the management of adolescents and young adults with IBD. Growth failure in IBD is characterized by delayed skeletal maturation and a delayed onset of puberty, and is best described in terms of height-for-age standard deviation score (Z score) or by variations in growth velocity over a period of 3-4 months. Growth failure is common at presentation in Crohn's disease (CD), but less common in ulcerative colitis (UC). The etiology of growth failure is multifactorial. Principal determinants, however, include the inflammatory process per se, with proinflammatory cytokines (e.g., IL-1beta, IL-6) being directly implicated. Furthermore, poor nutrition and the consequences of prolonged corticosteroid use also contribute to the significant reduction in final adult height of almost 1 in 5 children. Initially a prompt, where possible steroid-free, induction of remission is indicated. The ideal is then to sustain a relapse-free remission until growth is complete, which is often not until early adulthood. These goals can often be achieved with a combination of exclusive enteral nutrition (EEN) and early use of immunosuppressants. The advent of potent and efficacious biological agents considerably improves the range of growth-sparing interventions available to children around puberty, although well-timed surgery remains another highly effective means of achieving remission and significant catch-up growth. We carried out a systematic review of publications to identify the best available evidence for managing growth failure in children with IBD. Despite the paucity of high-quality publications, sufficient data were available in the literature to allow practical, evidence-based where possible, management guidelines to be formulated. Although there is clear evidence that exclusive enteral nutrition achieves mucosal healing, its effect on growth has only been assessed at 6 months. In contrast to corticosteroids, EEN has no negative effect on growth. Corticosteroids remain the key therapy responsible for medication-induced growth impairment, although the use of budesonide in selected patients may minimize the steroid effect on dividing growth plates. Immunosuppressants have become a mainstay of treatment in children with IBD, and are being used earlier in the disease course than ever before. However, there are currently no long-term data reporting better growth outcome if these agents are introduced very soon after diagnosis. In comparison, recent data from a large prospective trial of infliximab in children with moderate to severe CD suggested significant catch-up growth during the first year of regular infusions. The only other intervention that has documented clear catch-up growth has been s...

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The IMPACT Questionnaire: A Valid Measure of Health-Related Quality of Life in Pediatric Inflammatory Bowel Disease

Abstract: 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.

Cited by 234 publications

References 16 publications

Special issues in pediatric inflammatory bowel disease

Special issues in pediatric inflammatory bowel disease

Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics

Guidelines for the management of growth failure in childhood inflammatory bowel disease

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