The Clinical Utility of Health-Related Quality of Life Screening in a Pediatric Inflammatory Bowel Disease Clinic

Autor: Katherine W. F. Junger, Lee A. Denson, Shehzad Ahmed Saeed, Kevin A. Hommel, Elizabeth A. Hente, Michael W. Mellon, Jamie L. Ryan
Rok vydání: 2013
Předmět:
Zdroj: Inflammatory Bowel Diseases. 19:2666-2672
ISSN: 1078-0998
Popis: Inflammatory bowel disease (IBD) is a chronic idiopathic disease characterized by an unpredictable course that includes intermittent periods of symptom exacerbation and remission. In addition to coping with the uncertainties of their disease, youth with IBD are responsible for managing a complex and potentially burdensome treatment regimen that is sometimes associated with negative side effects.1,2 Collectively, these factors place youth with IBD at increased risk for emotional and behavioral problems,3,4 which in turn have been associated with medication nonadherence in adolescents5 and poor disease outcomes, including increased relapses and disease activity, in adults with IBD.6,7 Thus, identifying patients at risk for experiencing psychosocial difficulties is critical in preventing adverse outcomes; yet the implementation of screening measures into standard clinical practice remains a challenge. One measure of psychosocial adjustment to chronic illness that has traditionally been conceptualized as an important outcome in adult and pediatric health is health related quality of life (HRQOL), defined as a patient's current perception of functioning across several areas. In addition to its responsiveness to treatment intervention8 and association with disease severity9,10 and barriers to care,11 to name a few, HRQOL has demonstrated its clinical utility in several adult chronic illness populations. For instance, HRQOL predicted mortality and hospitalizations independent of several demographic (e.g., age, gender, socioeconomic status) and comorbid factors (e.g., medication dose, time on dialysis, and body mass index) in a large sample of adults with end-stage renal disease.12 In adults with myocardial infarction, lower physical HRQOL was related to poorer treatment adherence, using both cross-sectional and prospective approaches, even after controlling for depression.13 In one study of pediatric patients on managed care health plans, parent proxy-reported HRQOL predicted healthcare costs over 6, 12, and 24 months.14 Although youth perspective on how their illness impacts daily functioning and HRQOL is the preferred method, parent proxy-reported HRQOL is a vital and valid estimate of youth HRQOL when the child is either unable to participate in the evaluation or the validity of his responses is in question.15 In addition to its predictive utility which has seldom been examined, HRQOL is an advantageous clinical tool because a large proportion of youth with chronic illness present with sub-clinical levels of depression but significant functional impairment in important life domains.16,17 This is particularly concerning given that poor HRQOL is related to increased school/work absenteeism, lower standardized achievement and intelligence testing scores, and work productivity loss.18-21 Without HRQOL screening, a subgroup of patients may be overlooked and not receive the necessary resources or referrals for additional services (e.g., psychological, education specialists, social services). Taken together, these findings support the need for screening youth HRQOL during clinic visits in order to identify those at risk for further psychosocial difficulties and poor disease outcomes. To our knowledge, few studies have examined the relationship between HRQOL and clinical outcomes,12,13,22 and only one included a pediatric sample14; however, that study did not evaluate youth-reported HRQOL and included costs accrued as the sole measure of healthcare utilization. The current study advances the existing literature by examining the clinical utility of youth and parent proxy-reported HRQOL in predicting disease severity and healthcare utilization in a sample of youth with IBD. Specifically, lower HRQOL was hypothesized to predict higher physician-rated disease severity at baseline and increased healthcare utilization, including more IBD-related hospital admissions, Emergency Department (ED) visits, phone calls to the provider, psychological services, GI clinic visits, and referrals for pain management over the next 12 months.
Databáze: OpenAIRE