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Pediatric Quality of Life InventoryTM version 4.0 short form generic core scale across pediatric populations review
Matthew Smyth1,2, Kevan Jacobson1,2,3
1Department of Pediatrics, Division of Gastroenterology, Hepatology and Nutrition, Faculty of Medicine, British Columbia Children's Hospital, University of British Columbia, British Columbia, Canada.
Insights
Pediatric Quality of Life Inventory (PedsQL) scores reveal that children with active Inflammatory Bowel Disease (IBD) experience significantly lower quality of life compared to healthy peers and those with other chronic conditions.
Area of Science:
- Pediatric Health Outcomes
- Quality of Life Assessment
- Chronic Illness Management
Background:
- The Pediatric Quality of Life Inventory (PedsQL) is a validated tool for assessing child and youth quality of life (QoL).
- Comparing QoL across pediatric disease cohorts helps understand the psychosocial impact of chronic illnesses.
- A QoL initiative at British Columbia Children's Hospital (BCCH) Inflammatory Bowel Disease (IBD) program informed this analysis.
Purpose of the Study:
- To compare QoL scores of pediatric patients with IBD to healthy populations and other chronic disease cohorts.
- To analyze how disease activity in pediatric IBD impacts patient-reported QoL.
- To provide clinicians with data on QoL influences in pediatric chronic illness.
Main Methods:
- A literature review identified studies using the PedsQL short form generic scale with populations >50 patients.
- Data from existing literature were qualitatively compared to the BCCH IBD cohort.
- BCCH IBD patient QoL scores were analyzed based on disease activity (remission vs. active disease).
Main Results:
- Healthy children in BCCH and California reported mean QoL scores of 89.2 (10.3) and 83.9 (12.5), respectively.
- BCCH IBD patients in remission (84.4 (12.8)) had QoL scores similar to healthy cohorts.
- Children with active IBD (75.6 (15.8)) and moderate-to-severe active IBD (63.1 (18.8)) showed significantly lower QoL scores than healthy groups and most other chronic illness cohorts.
Conclusions:
- Active pediatric IBD significantly diminishes quality of life compared to healthy children and those with other chronic conditions.
- Disease severity is a critical factor influencing QoL in pediatric IBD patients.
- These findings aid clinicians in understanding and addressing QoL challenges in pediatric chronic illness.
Abstract:
The Pediatric Quality of Life InventoryTM Version 4.0 Short Form Generic Core Scale (PedsQLTM) is a validated and widely used tool assessing the quality of life (QoL) of children and youth. It has been used extensively across healthy populations as well as those with chronic and acute illnesses, allowing for comparison of the psychosocial impact of chronic illness between pediatric disease cohorts. As part of the QoL initiative undertaken at the British Columbia Children's Hospital (BCCH) Inflammatory Bowel Disease (IBD) program and published in the Journal of Pediatrics titled "Cross-Sectional Analysis of Quality of Life in Pediatric Patients with IBD in British Columbia, Canada," a limited literature review was conducted using Embasse and Ovid. Studies using the English version of the PedsQLTM short form generic scale (not a disease specific scale) were identified. Studies with populations greater than 50 patients with robust subgroup sample size were included, with an emphasis on studies with well-defined patients with chronic disease. These data were compared to the BCCH population, as discussed in the aforementioned journal article. Analysis within the BCCH cohort is described separately. Comparison between different populations from the existing literature was qualitative only, with no statistical analysis done given the heterogeneity of populations and studies. In a study of patients from the emergency department at BCCH (n=178), the mean (SD) QoL scores of the healthy patients was 89.2 (10.3). In a group of self-identified healthy patients in California (n=5079), their mean QoL score was 83.9 (12.5). Separating the BCCH IBD population by disease activity, those in remission (n=220, 84.4 (12.8)) have similar QoL scores to these healthy cohorts, though their scores remain slightly below the previously published BCCH cohort. For children with any degree of active IBD (n=98, 75.6 (15.8)), their QoL scores are below the healthy means and are lower than other groups with self-identified "chronic illnesses" (n=367, 77.2 (15.5)), diabetes (n=418, 82.3 (13.5)), mild asthma (n=281, 85.5 (13.3)), or Canadian patients 4 weeks post-concussion (n=1157, 80.3). BCCH IBD patients with moderately to severely active disease have QoL scores well below the other disease groups (n=33, 63.1 (18.8)); lower than oncology patients on induction chemotherapy regimens (n=105, 68.9 (16.0)), acute inpatients (n=359, 63.9 (20.3)), and asthmatics with moderate-severe, persistent asthma (n=86, 67.1 (18.6)). This data is useful for clinicians treating pediatric patients looking at how QoL is influenced by chronic illness and by factors such as disease type and severity.
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