Pediatric Quality of Life InventoryTM version 4.0 short form generic core scale across pediatric populations review data

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.


a b s t r a c t
The Pediatric Quality of Life Inventory TM Version 4.0 Short Form Generic Core Scale (PedsQL TM ) 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 PedsQL TM 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-DOI of original article: 10.1016/j.jpeds.2021.07.036 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.

Value of the Data
• To provide a comparison of quality of life between various pediatric chronic illnesses as well as their healthy peers using a validated, generic, and widely used quality of life measurement tool. • This information is useful for clinicians caring for pediatric patients with a variety of chronic illnesses. • As the PedsQL TM continues to be widely used in clinical care and research alike, this data will continue to be useful in providing a benchmark for results across patient populations. By breaking down results by both disease type and disease severity/disease activity, and ensuring conclusions are drawn with robust population sizes, this data should provide the standard by which future PedsQL TM research is conducted. • This data enables the reader to appreciate the psychosocial burden of disease across populations and anticipate the needs of the patient. By understanding the quality of life implications of a chronic diagnosis, the hope is that the practitioner can work with families and community supports to help children and youth thrive despite their diagnosis. Table 1: this table corresponds to supplemental Table 3 from the article "Cross-Sectional Analysis of Quality of Life in Pediatric Patients with Inflammatory Bowel Disease in British Columbia, Canada" published in the Journal of Pediatrics.

Data Description
The table shows the results from the pediatric Inflammatory Bowel Disease (IBD) population at BC Children's Hospital (BCCH) as well as the PedsQL TM scores from multiple other large studies that used the Quality of Life (QoL) tool. 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)) are similar to these healthy scores, though 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)). The raw data for this table is attached and is also available on an open data repository.
Data Upload: The raw data is uploaded in both .csv and .sav format Supplemental Data: Original Article: The original research article, in press with the Journal of Pediatrics, is attached.
PedsQL TM Pediatric Quality of Life Inventory Version 4.0 Short Form: The short form of the survey was used to collect the quality of life data for this study. The authors do not own the rights to this tool, and so will provide a summary of the tool only. The tool uses a standard 5 point Likert scale for patients to respond to each question. There are four sections to the short form questionnaire, with 3-5 questions per section for a total of 15 questions. The first section looks at any issues being able to do normal activities of childhood and participating with peers; the second section looks at frequency of low mood symptoms; the third section asks about interpersonal difficulties with peers; the fourth section looks at difficulty with classwork specifically.

BCCH IBD QoL Data:
This data is from is a cross-sectional, retrospective study analyzing a quality improvement initiative in the IBD program at British Columbia Children's Hospital (BCCH), Vancouver, Canada. From 2014-2018, a multidisciplinary team of pediatric gastroenterologists, IBD nurses, and clinical psychologists at BCCH started a program to identify and support IBD patients with psychosocial issues associated with their disease. QoL was assessed using the Pediatric Quality of Life Inventory TM Version 4.0 Short Form Generic Core Scale (PedsQL TM ) [24] , accessed via the hospital's licence. This tool was selected for its brevity and lack of questions overlapping with specific IBD symptoms, its validation in our target age group, and its straightforward scoring based off a Likert scale. The PedsQL TM was programed into a REDCap [25] survey accessed on iPads donated by the BCCH Foundation. The disease activity at the time of survey completion was determined as part of clinical care, and patients were separated into disease activity categories that included remission, mild and moderate/severe disease. The overall QoL scores of the patient cohort as well as the QoL scores by disease activity are presented in the table (mean with standard deviation).
QoL scores from other patient populations: After identifying appropriate studies (those with large, well-defined cohorts of patients with chronic illnesses and healthy controls) from EMBASS and OVID since 2003 (time of PedsQL TM publication), mean QoL scores from the PedsQL TM were extracted, along with standard deviations, where possible. For some studies [5] , IQR was given and is presented, and for other studies [ 1 , 7 , 19 ], the SD was derived from the data in the manuscript and a standard deviation is presented.

Ethics Statement
Ethical Considerations: This study evaluates a quality improvement initiative, and after consultation with the BCCH Research Ethics Board and in accordance with National TCPS2 policy, the study did not require an official ethics review.