Clinical data and Pediatric Quality of Life Inventory (PedsQL™) scores for children with duodenal atresia

This article presents raw data obtained from a prospectively collected database of children with duodenal atresia at tertiary pediatric surgery hospital. For all potential participants, pertinent demographic, clinical and operative data was obtained from the database. Potential participants were then contacted and invited to complete a Pediatric Quality of Life Inventory (PedsQL™) 4.0 core score and gastrointestinal module questionnaires. Participant's response to each item in the questionnaires is provided, as well as their calculated health related quality of life scores. Data has the potential to be reused in future studies examining quality of life in duodenal atresia, paediatric gastrointestinal conditions, surgical neonatal conditions and children with trisomy 21. Further analysis and discussion is contained in related research article titled “Quality of life outcomes in children born with duodenal atresia” [1].


Data
This raw dataset (contained in the linked repository [2]) contains demographic information, as well as clinical, diagnostic and operative data for all participants (section 1) and non-participants (section 2). Also contained are the responses from each participating family (parent, and if applicable, child) for each question in the Pediatric Quality of Life Inventory (PedsQL™) 4.0 generic core score (section 3) and PedsQL™ gastrointestinal (GI) module (section 4). Section 1 (participants, n ¼ 38) and section 2 (non-participants, n ¼ 72) contains demographic data including sex and the patients age at the time the study was commenced (May 30, 2018), converted from DOB to protect patient privacy. Clinical data includes gestation, birth weight and multiple gestation is also presented. Diagnostic information includes location of duodenal atresia (DA), description of pancreas, gastrointestinal rotation, associated syndromes, cardiac and chromosomal anomalies. Operative data includes type of repair, type of anastomosis and whether a Ladd's procedure was performed. For participants, converted scores for the four scales of the PedsQL™ core score are presented: physical, emotional, social and school functioning. Also included is the physical and psychosocial health summary scores. Specifications Table   Subject Surgery; Perinatology, Pediatrics and Child Health Specific subject area Pediatric Surgery, Quality of Life, Duodenal Atresia Type of data

Database
This article presents data from a prospectively collected RedCAP database (DB#077) of patients with duodenal atresia (DA) at the Royal Children's Hospital, Melbourne, since July 2000. This database contains extensive detail of demographic, clinical (antenatal and postnatal), and operative information with over 500 specific data points. Participants were eligible for participation if they were !2 years at the time of the start of the study (30 May 2018) and had an operative diagnosis of duodenal atresia. Fifteen data points deemed relevant for this study were extracted from the database for all eligible participants (n ¼ 120). All the extracted data points are reported in section 1 and section 2.

Quality of life outcome questionnaires
The PedsQL™ questionnaires are a collection of validated surveys that assess the quality of life in children. There are a variety of questionnaires that examine general quality of life, specific body systems (e.g. gastrointestinal or cardiac) or specific medical conditions (e.g. cerebral palsy or asthma). In this study we use the PedsQL™ 4.0 generic core score [3] and the PedsQL™ gastrointestinal symptoms module [4].
The core score questionnaires contains 23 items for young children (5e7 years), children (8e12 years) and teens (13e18 years). Parents and children have the same number of items covering the same four domains. For toddlers (2e4 years) there is only a parent questionnaire containing 21 items. The GI module also only contains a parent questionnaire for toddlers, and a parent and child questionnaire for the other age groups. Each GI questionnaire contains 74 items over 14 domains. All questionnaires cover the frequency of symptoms for the child over the last one month.

Survey collection
Contact information (address and telephone number) was retrieved from The Royal Children's Hospital (Melbourne, Australia) electronic medical record system. Patients who had not attended the hospital in the last five years were first sent a tracing letter as recommended by our local ethics committee. Participant's families that responded to the tracing letter, or that had been seen by our health service in the last five years were then invited to participate. These families were sent a PedsQL™ generic core scale and PedsQL™ GI module questionnaire appropriate for the patient's age. Surveys were returned by included postage-paid envelopes. If the survey was not returned in four weeks, two attempts were made to contact the family via phone. Families then given the option to return the physical survey or complete the survey over the phone.

Data analysis
Raw scores are provided as received by participants, with direct entry of the results from manually completed questionnaire forms. If more than one answer was marked for any given question, the result for that question was excluded from the study and marked as not answered ('N/A').
Raw scores were inversely scored then linear converted to a score from 0 to 100 using Excel for Mac Version 16 (Redmond, WA; Microsoft Corp) using the following Excel formula: ¼ ABSðð 0 raw score 0 Â 25Þ À 100Þ. The average score (Excel formula: ¼ averageð 0 converted scores 0 Þ) for each participant was then calculated as the overall score. The score for each scale in the core score (physical, emotional, social and school functioning scales) and GI module (see section 2) were calculated by averaging the answered questions for each domain. The psychosocial health summary score was calculated by averaging all the answered questions in the emotional, social and school functioning scales. The physical health summary score was the same as the physical functioning scale. As per the PedsQL™ scoring instructions [3], if more than 50% of items for any scale, or overall, were missing, the score was not calculated. Scores are presented on a linear scale of 0e100, with a higher score equating to a better quality of life.
Further data analysis is performed and presented in a separately published article by the same authors [1].

Ethics approval
Approval was obtained from this study from The Royal Children's Hospital Human Research Ethics Committee (HREC 38054A).