Development of a Quality-of-Life Index for Pediatric Inflammatory Bowel Disease: Dealing with Differences Related to Age and IBD Type

Griffiths, Anne M.; Nicholas, David; Smith, Claire; Munk, Marla; Stephens, Derek; Durno, Carol; Sherman, Philip M.

doi:10.1097/00005176-199904001-00009

Cited by 115 publications

(111 citation statements)

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“…In the development process of a disease-specific health related quality of life instrument for pediatric IBD, body image issues including height and weight were among the concerns most frequently cited by adolescents with CD [25] .…”

Section: Psychosocial Impact Of Impaired Growthmentioning

confidence: 99%

Growth Retardation in Early-Onset Inflammatory Bowel Disease: Should We Monitor and Treat These Patients Differently?

Griffiths

2009

Dig Dis

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Growth impairment and associated pubertal delay are common complications of pediatric inflammatory bowel disease (IBD), particularly Crohn’s disease (CD). Chronic undernutrition (related primarily to inadequate intake) and pro-inflammatory cytokines are the two major and interrelated contributory factors. Pathogenic mechanisms include interference with growth hormone/insulin-like growth factor-1 axis, with gonadotropin-releasing hormone secretion patterns, and direct cytokine effects on growing bone. Chronic corticosteroid therapy compounds disease-related causes of growth impairment. The influence on growth of polymorphisms in IBD susceptibility or modifier genes is under study. Accurate recognition of impaired growth requires appreciation of normal growth. Pre-illness standard deviation scores (SDS) for height should be obtained and compared with height SDS at diagnosis, so that the impact of disease on growth can be fully appreciated. The greater the deficit prior to recognition of IBD, the greater is the demand for catch-up growth. Height velocity should be regularly monitored and its adequacy for age and pubertal stage assessed. Restoration and maintenance of pre-illness growth pattern indicate success of therapy. Current treatment regimens limit use of corticosteroids, via optimization of immunomodulatory drugs, use of enteral nutrition in CD, and, if necessary, surgery for ulcerative colitis and for intestinal complications of localized CD. Biologic agents with the potential for mucosal healing hold promise of growth enhancement even among children, whose growth with previously available therapies remained compromised. For all therapies, there is a window of opportunity to achieve normal growth before puberty is too advanced.

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Section: Psychosocial Impact Of Impaired Growthmentioning

confidence: 99%

Growth Retardation in Early-Onset Inflammatory Bowel Disease: Should We Monitor and Treat These Patients Differently?

Griffiths

2009

Dig Dis

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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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“…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%

“…Collaboration among investigators in Canada and the Netherlands and elsewhere has led to the development of a condition-specific measure of HRQoL for children and adolescents with IBD, the Impact Questionnaire. Its topics developed initially from interviews with children and adolescents ages 8 to 17 years with IBD (14), followed by reduction in items through ratings of importance by respondents with IBD, leading initially to a 33-item measure, to which 2 items were added to enhance postulated domains. These investigators developed a consensus postulating 6 domains: bowel symptoms, systemic symptoms, social/ functional concerns, body image, test and treatment concerns, and emotional concerns.…”

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confidence: 99%

“…No analytical process, such as factor analysis, was used in constructing the domains or assigning items. 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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Development of a Quality-of-Life Index for Pediatric Inflammatory Bowel Disease: Dealing with Differences Related to Age and IBD Type

Cited by 115 publications

References 11 publications

Growth Retardation in Early-Onset Inflammatory Bowel Disease: Should We Monitor and Treat These Patients Differently?

Growth Retardation in Early-Onset Inflammatory Bowel Disease: Should We Monitor and Treat These Patients Differently?

Special issues in pediatric inflammatory bowel disease

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

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