Pediatric Quality of Life Inventory (PedsQL) Article Summary
PedsQL Article: Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents Boon M, Claes I, Havermans T, et al. Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents. PLoS One. 2019;14(12):e0225004. Published 2019 Dec 20. doi:10.1371/journal.pone.0225004 Purpose: To validate a cystic fibrosis-specific quality of life questionnaire in pediatric patients with CF by comparing the PedsQL GI (Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Scales and Module) to other QOL questionnaires such as the cystic fibrosis QOL questionnaire (CFQ-R) and visual analogue scale (VAS). Population: 248 children and their parents in Europe. The children included in the study had cystic fibrosis and ranged from 24 months to 18 years old and all had pancreatic insufficiency and were being treated with pancreatic enzyme replacement therapy (PERT). Methods: A 3 month prospective observational study with a…
Read MorePediatric Quality of Life Inventory (PedsQL) in children with cancer: Article Summary
Study Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL™ in pediatric cancer: Reliability and validity of the pediatric quality of life inventory™ generic core scales, multidimensional fatigue scale, and cancer module. Cancer. 2002;94(7):2090-2106. doi:10.1002/cncr.10428 Purpose The study was conducted to examine the clinical relevance of the use of the Pediatric Quality of Life Inventory 4.0 (PedsQL) in pediatric patients with cancer. The PedsQL administered included the Generic Core scales, Multidimensional Fatigue Scale, and Cancer Module. Population 339 families were given the 3 questionnaires. Patients were of ages 2-18, 56% male and 44% female, and considered heterogenous in terms of ethnicity and race. The most common diagnoses included leukemia, brain tumor, lymphoma (both non-Hodgkin and Hodgkin), and Wilms’ tumor. Patients had no other comorbidities and were eligible to participate at all stages of treatment, from newly diagnosed to recently in remission. Methods Patients were recruited from oncology and…
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Title: Quality-of-Life Evaluation of Healthy Siblings of Children with Chronic Illness Purpose: A study by Dinleyici et al. (2020) used the PedsQL to measure the health-related quality of life (HrQoL) of siblings of children with chronic conditions. Study Population: Dinleyici et al. (2020) used a sample of 191 siblings of children with chronic conditions and 100 age-matched healthy siblings of healthy children as a control group. The chronic conditions included cerebral palsy, hematologic/oncologic conditions, asthma, type 1 diabetes, celiac disease, and epilepsy. Methods: Siblings of healthy children and siblings of children with chronic conditions, as well as the parents of the children in both groups, completed a self-reported PedsQL. The PedsQL looks at four domains including physical, social, and emotional health and school functioning. The parent and child forms were completed for each group. The researchers analyzed the domains by category: physical health, psychosocial health (including emotional, social, and school…
Read More“Pediatric Quality of Life Inventory (PedsQL) in Fragile X Syndrome” Article Summary
The purpose of this article was to evaluate the quality of life in children with fragile X syndrome using the Pediatric Quality of Life Inventory. The population studied in this article was comprised of children between the ages of 5 and 17 years old who have full mutation fragile X syndrome. Parents of children with fragile X syndrome completed the PedsQL online using SurveyMonkey. They were selected for the study through a nationwide email sent by the National Fragile X Foundation. Parents completed the Parent Report for Children Version of the PedsQL 4.0 Generic Core Scales and Cognitive Functioning Scale as well as the PedsQL Family Impact Module. Researchers stated that the strongest correlation that was found was between the caregiver quality of life and family quality of life. Between the five dimensions of health for the child they stated that the strongest correlation found was between Cognitive and School…
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Study: Effects of a family-centered workshop for children with developmental delays. Authors: Wen-Huei Hsieh, Wen-Chung Lee, Ru-Lan Hsieh Purpose: The purpose of the study was to assess the impact of a family-centered workshop designed for children with developmental delays. The study specifically examined the functioning and health of the children as well as the impact the workshop had on the family. Study Population: The population included 30 children with developmental delays, their parents, 57 age and sex matched children with normal development, and their parents. Criteria to be included in the 30 children with developmental delays included: aged 18-36 months, first diagnosed developmental delay being a speech delay, participant on the wait list to receive intervention services but has not received any services yet, and an availability to attend a 2-hour workshop weekly for 6 weeks. Methods and Outcome Measures: The 30 children and their families participated in a 2-hour…
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Holst MVD, Steenbeek D, Pondaag W, Nelissen RG, Vlieland TPV. Neonatal brachial plexus palsy in children aged 0 to 2.5 years; parent-perceived family impact, quality of life, and upper extremity functioning. Pediatric Neurology.2016;62; 34-42. Purpose The purpose of this study was to investigate the impact of Neonatal Brachial Plexus Palsy (NBPP) on the family by gathering information regarding the parental QoL, perceived QoL of the NBPP child, and upper extremity function on children younger than 2.5 years of age. Perceived QoL, or how the parents of a child with NBPP perceive their child’s functioning, has never before been studied in this population, and was included to explore the full familial impact. Population This study focused infants and/or children between the ages of 0-2.5 years of age with a diagnosis of NBPP. 59 total patients participated in the study. The only exclusion criteria for this study includes individuals with a NBPP…
Read MoreReliability and Validity of the Turkish Version of the PedsQL 3.0 Cancer Module and PedsQL 4.0 Generic Core Scales for 2-7 Year Olds
Article: Reliability and Validity of the Turkish Version of the PedsQL 3.0 Cancer Module for 2- to 7-Year-Old and the PedsQL 4.0 Generic Core Scales for 5- to 7-Year-Old: The Hacettepe University Experience Category: Evaluative The article I chose to review was entitled, Reliability and Validity of the Turkish Version of the PedsQL 3.0 Cancer Module for 2-7 Year Old and the PedsQL 4.0 Generic Core Scales for 5-7 Year Old: The Hacettepe University Experience. The article began by giving an in-depth explanation of the phrases Quality of Life (QOL) and Health Related Quality of Life (HRQOL) and their meaning in reference to the physical, social, and mental aspects that make up a patient’s life. The article continued by stating that HRQOL assessments specifically are used to derive the influence of a disease/treatment on quality of life. One such HRQOL assessment is the Pediatric Quality of Life Inventory (PedsQL) that…
Read MoreValidation of the PedsQL Epilepsy Module
Pediatric Quality of Life Inventory (PedsQL) Category: Evaluative Article: Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure. Article Summary: The PedsQL Epilepsy Module was analyzed amongst other questionnaires (including BRIEF, BASC-2, and PESQ) to determine the reliability and validity of this epilepsy-specific HRQOL tool in a pediatric population with diagnosed epilepsy. There are several shortcomings for existing pediatric epilepsy-specific HRQOL measures including weakness in their clinical utility, being lengthy (48-79 items), lack parallel caregiver and child-report forms, and lack inclusion of those with learning/developmental disabilities. The PedsQL Epilepsy Module is a 29-item measure with five scales: Impact, Cognitive, Sleep, Executive Function, and Mood/Behavior. The Impact Scale assesses how epilepsy disrupts daily activities, interacting with peers, independence, and increased disease burden due to treatment. The Cognitive Scale assesses memory, ability to learn new material, school-related difficulties, and reading difficulties. The Sleep Scale assesses fatigue and…
Read MoreUsing the PedsQL in Individuals with IDD
After reviewing the above posts regarding the PedsQL, all data appears thorough and up-to-date. Upon further review of the literature, there is additional research regarding the reliability and validity in administering the PedsQL within certain population subsets. Article Summary: Viecili, M.A., & Weiss, J.A. (2015). Reliability and validity of the Pediatric Quality of Life Inventory with individuals with intellectual and developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120, 289-301. This study was performed in order to assess the reliability and validity of the PedsQL within a specific population; pediatric patients with intellectual and developmental disabilities. Establishing health-related quality of life (HRQOL) in this population is of particular importance as their condition is considered to be life long; their needs are multifaceted and persist across contexts; their symptoms impacting social and academic functioning. Participants in this study included 359 caregivers of children, youth, and young adults with…
Read MorePediatric Quality of Life Inventory (PedsQL)
The Pediatric Quality of Life Inventory (PedsQL) is a useful tool to evaluate the reported quality of life in children within a healthcare setting as per the child’s self-report or the parent/caregiver’s observations. The preliminary post addresses many details about this inventory measure, however, there are some additional facts to be mentioned. In addition to this inventory having usefulness in healthcare settings, the tool was designed for employment in community and school populations. Due to the nature of this design, the inventory contains segments that address the physical, emotional, social, and scholastic functioning of the child, in question. These segments are broken into two categories of scores, the physical health summary score and the psychosocial health summary score. Together, these scores give a more well-rounded and complete depiction of the child’s status. Even more useful about this tool, is that there are disease-specific modules of the measure that are available to tend to…
Read MorePediatric Quality of Life Inventory (PedsQL)
Title: The Pediatric Quality of Life Inventory (PedsQL) Date of Publication: 1998 Author: James W. Varni, Ph.D. Source (publisher or distributor, address): Mapi Research Trust 27, rue de la Villette 69003 Lyon France Costs: Not funded academic research = Free of charge Funded academic research = license per study: $990 including delivery of 1 module + $330 per additional module Large non-commercial organization research & evaluation: can be based per study or based on yearly contract for unlimited evaluation License per study: Owner’s Royalty Fees: $1,322.50. Mapi Research Trusts’ processing Fees: $1,080 including delivery of 1 module + $360 per additional module. Annual license fee (unlimited use for 1 year): Author’s annual royalty fee: 3 centers or less = $6,647, 4-10 centers = $13,260, 11-15 centers = $19,872, 16+ centers = $26,485 Mapi Research Trust’s Processing Fees: $1,080 including delivery of 1 module + $360 per additional module Commercial Use:…
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