PedsQL™ Bibliographic References

Generic Core Scales

-       Varni JW, et al. The PedsQL™: Measurement Model for the Pediatric Quality of Life Inventory. Medical Care,1999; 37(2):126-139 

-       Varni, J.W., et al. The PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care,2001; 39(8): 800-812. 

-       Varni, J.W., et al., (2002).  The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making.Journal of Behavioral Medicine, 25, 175-193.

-       Varni, J.W., et al. (2003). The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity.Ambulatory Pediatrics, 3, 329-341.

-       Varni, J.W., & Limbers, C.A. (2009). The PedsQL™ 4.0 Generic Core Scales Young Adult Version: Feasibility, reliability and validity in a university student population.Journal of Health Psychology, 14, 611-622.

 

Short Form 15 Generic Core Scales

-       Chan, K.S., Mangione-Smith, R., Burwinkle, T.M., Rosen, M., & Varni, J.W. (2005). The PedsQL™: Reliability and validity of the Short-Form Generic Core Scales and Asthma Module.Medical Care, 43, 256-265.

-       Lin, C.Y., Luh, W.M., Yang, A.L., Su, C.T., Wang, J.D., & Ma, H.I. (2012). Psychometric properties and gender invariance of the Chinese version of the self-report Pediatric Quality of Life Inventory Version 4.0: Short Form is acceptable. Quality of Life Research, 21, 177-182.

-       Chen, X., Origasa, H., Ichida, F., Kamibeppu, K., & Varni, J.W. (2007). Reliability and validity of the Pediatric Quality of Life Inventory™ (PedsQL™) Short Form 15 Generic Core Scales in Japan. Quality of Life Research, 16, 1239-1249.

 

Arthritis Module

-       Varni, J.W., Seid, M., Knight, T.S., Burwinkle, T.M., Brown, J., & Szer, I.S. (2002).  The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module.  Arthritis and Rheumatism, 46, 714-725.

-       Seid, M., Huang, B., Niehaus, S., Brunner, H.I., & Lovell, D.J. (in press). Determinants of health-related quality of life in children newly diagnosed with juvenile idiopathic arthritis. Arthritis Care & Research.

-       Seid, M., Opipari, L., Huange, B., Brunner, H.I., & Lovell, D.J. (2009). Disease control and health-related quality of life in juvenile idiopathic arthritis. Arthritis and Rheumatism, 61, 393-399.

-       Sawyer, M.G., Carbone, J.A., Whitham, J.N., Roberton, D.M., Taplin, J.E., Varni, J.W., & Baghurst, P.A. (2005). The relationship between health-related quality of life, pain, and coping strategies in juvenile arthritis: A one year prospective study. Quality of Life Research, 14, 1585-1598.

-       Sawyer, M.G., Whitham, J.N., Roberton, D.M., Taplin, J.E., Varni, J.W., & Baghurst, P.A. (2004).  The relationship between health-related quality of life, pain, and coping strategies in juvenile idiopathic arthritis. Rheumatology, 43, 325-330.

 

Asthma Module

-       Varni, J.W., Burwinkle, T.M., Rapoff, M.A., Kamps, J.L., & Olson, N. The PedsQL™ in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Asthma Module. Journal of Behavioral Medicine, 2004; 27:297-318.

-       Chan, K.S., Mangione-Smith, R., Burwinkle, T.M, Rosen, M., & Varni, J.W. (2005). The PedsQL™: Reliability and validity of the Short-Form Generic Core Scales and Asthma Module. Medical Care, 43, 256-265.

 

Brain Tumor Module

-       Palmer, S.N., Meeske, K.A., Katz, E.R., Burwinke, T.M., & Varni, J.W. (2007). The PedsQL™ Brain Tumor Module: Initial reliability and validity. Pediatric Blood and Cancer, 49, 287-293.

 

Cancer Module

-       Varni, J.W., Burwinkle, T.M., Katz, E.R., 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: 2090-2106.

-       Robert RS, Paxton RJ, Palla SL, Yang G, Askins MA, Joy SE, Ater JL. Feasibility, reliability, and validity of the pediatric quality of life inventory™ generic core scales, cancer module, and multidimensional fatigue scale in long-term adult survivors of pediatric cancer.Pediatric Blood & Cancer2012;59:703–707.

 

Cardiac Module

-       Uzark, K., Jones, K., Burwinkle, T.M., & Varni, J.W. The Pediatric Quality of Life Inventory™ in children with heart disease.Progress in Pediatric Cardiology, 2003; 18:141-148.

-       Uzark, K., Jones, K., Slusher, J., Limbers, C.A., Burwinkle, T.M., & Varni, J.W. (2008). Quality of life in children with heart disease as perceived by children and parents. Pediatrics, 121, e1060-e1067.

 

Cerebral Palsy Module

-       Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, Chambers HG (2006). The PedsQL™ in Pediatric Cerebral Palsy: Reliability, Validity, and Sensitivity of the Generic Core Scales and Cerebral Palsy Module.Developmental Medicine and Child Neurology, 48: 442-449.

 

Cognitive Functioning Scale

-       McCarthy, M.L., MacKenzie, E.J., Durbin, D.R., Aitken, M.E., Jaffe, K.M., Paidas, C.N. et al. (2005). The Pediatric Quality of Life Inventory: An evaluation of its reliability and validity for children with traumatic brain injury.Archives of Physical Medicine and Rehabilitation, 86, 1901-1909.

-       Varni, J.W., Burwinkle, T.M., Katz, E.R., Meeske, K., & Dickinson, P. (2002).  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, 94, 2090-2106.

-       Varni, J.W., Limbers, C.A., Sorensen, L.G., Neighbors, K., Martz, K., Bucuvalas, J.C., & Alonso, E.M. (2011). PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients: Feasibility, reliability and validity.Quality of Life Research, 20, 913–921.

 

Diabetes Module

-       Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. (2003). The PedsQL in Type 1 and Type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. Diabetes Care. Mar;26(3):631-7

-       Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AA. (2013). Content validity of the PedsQL™ 3.2 Diabetes Module in newly diagnosed patients with Type 1 diabetes mellitus ages 8-45. Quality of Life Research, 22, 2169-2181.

-       Hilliard, M.E., Lawrence, J.M., Modi, A.C., Anderson, A., Crume, T., Dolan, L.M., Merchant, A.T., Yi-Frazier, J.P., & Hood, K.K. (2013). Identification of minimal clinically important difference scores of the Pediatric Quality of Life Inventory in children, adolescents, and young adults with Type 1 and Type 2 diabetes. Diabetes Care, 36, 1891–1897.

-       Nansel, T.R., Weisberg-Benchell, J., Wysocki, T., Laffel, L. & Anderson, B. (2008). Quality of life in children with Type 1 diabetes: A comparison of general and disease-specific measures and support for a unitary diabetes quality of life construct. Diabetic Medicine, 25, 1316-1323.

-       Naughton, M.J., Ruggiero, A.M., Lawrence, J.M., Imperatore, G., Klingensmith, G.J. Waitzfelder, B., McKeown, R.E., Standiford, D.A., Liese, A.D., & Loots, B. (2008). Health-related quality of life of children and adolescents with type 1 or type 2 diabetes mellitus: SEARCH for Diabetes In Youth Study. Archives of Pediatrics and Adolescent Medicine, 162, 649-657.

 

Duchenne Muscular Dystrophy Module

-       Uzark, K., King, E., Cripe, L., Spicer, R., Sage, J., Kinnett, K., Wong, B., Pratt, J., & Varni, J.W. (2012). Health-related quality of life in children and adolescents with Duchenne Muscular Dystrophy.Pediatrics, 130, e1559-e1566.

 

End Stage Renal Disease Module

-       Goldstein, S.L., Graham, N., Warady, B.A., Seikaly, M., McDonald, R., Burwinkle, T.M., Limbers, C.A., & Varni, J.W. (2008). Measuring health-related quality of life in children with ESRD: Performance of the Generic and ESRD-Specific Instrument of the Pediatric Quality of Life Inventory™ (PedsQL™). American Journal of Kidney Diseases, 51, 285-297.

 

Eosinophilic Esophagitis

-       Franciosi, J.P., Hommel, K.A., Bendo, C.B., King, E.C., Collins, M.H., Eby, M.D., Marsolo, K., Abonia, J.P., von Tiehl, K.F., Putnam, P.E., Greenler, A.J., Greenberg, A.B., Bryson, R.A., Davis, C.M., Olive, A.P., Gupta, S.K., Erwin, E.A., Klinnert, M.D., Spergel, J.M., Denham, J.M., Furuta, G.T., Rothenberg, M.E., & Varni, J.W. (2013). PedsQL™ Eosinophilic Esophagitis Module: Feasibility, reliability and validity.Journal of Pediatric Gastroenterology & Nutrition, 57, 57-66.

-       Franciosi, J.P., Hommel, K.A., Greenberg, A.B., Debrosse, C.W., Greenler, A.J., Abonia, J.P., Rothenberg, M.E., & Varni, J.W. (2012). Development of the Pediatric Quality of Life Inventory™ Eosinophilic Esophagitis Module items: Qualitative methods.BMC Gastroenterology, 12:135, 1-8.

-       Franciosi J.P., Hommel, K.A., Debrosse, C.W., Greenberg, A.B., Greenler, A.J., Abonia, J.P., Rothenberg, M.E., & Varni, J.W. (2012). Quality of life in paediatric eosinophilic oesophagitis: What is important to patients? Child: Care, Health and Development, 38, 477–483.

Epilepsy Module

-       Junger, K.F., Mann, K.A., Guilfoyle, S.M., Morita, D.A., Varni, J.W., & Modi, A.C. (2016). Development of the PedsQL™ Epilepsy Module: Focus group and cognitive interviews. Epilepsy & Behavior, 62, 115-120.

 

Family impact Module

-       Varni, J.W., Sherman, S.A., Burwinkle, T.M., Dickinson, P.E., & Dixon, P. (2004). The PedsQL™ Family Impact Module: Preliminary reliability and validity. Health and Quality of Life Outcomes; 2(55), 1-6.

-       Medrano, G.R., Berlin, K.S., & Davies, W.H. (in press). Utility of the PedsQL™ Family Impact Module: Assessing the psychometric properties in a community sample.Quality of Life Research.

-       Jiang, X., Sun, L., Wang, B., Yang, X., Shang, L., & Zhang, Y. (2013). Health-related quality of life among children with recurrent respiratory tract infections in Xi'an, China.PLoS One, 8(2): e56945.

-       Mano, K.E., Khan, K.A., Ladwig, R.J., & Weisman, S.J. (2011). The impact of pediatric chronic pain on parents' health-related quality of life and family functioning: Reliability and validity of the PedsQL 4.0 Family Impact Module.Journal of Pediatric Psychology, 36, 517-527.

 

Gastrointestinal Symptoms Module

-       Varni, J.W., Bendo, C.B., Denham, J., Shulman, R.J., Self, M.M., Neigut, D.A., Nurko S., Patel, A.S, Franciosi, J.P., Saps, M., Verga, B., Smith, A., Yeckes, A., Heinz, N., Langseder, A., Saeed, S., Zacur, G.M., & Pohl, J.F. (in press). PedsQL™ Gastrointestinal Symptoms Module: Feasibility, reliability, and validity.Journal of Pediatric Gastroenterology & Nutrition.

-       Varni, J.W., Bendo, C.B., Denham, J., Shulman, R.J., Self, M.M., Neigut, D.A., Nurko, S., Patel, A.S, Franciosi, J.P., Saps, M., Yeckes, A., Langseder, A., Saeed, S., & Pohl, J.F. (in press).  PedsQL™ Gastrointestinal Symptoms Scales and Gastrointestinal Worry Scales in pediatric patients with functional and organic gastrointestinal diseases in comparison to healthy controls.Quality of Life Research.

-       Varni, J.W., Kay, M.T., Limbers, C.A., Franciosi, J.P., & Pohl, J.F. (2012). PedsQL™ Gastrointestinal Symptoms Module item development: Qualitative methods.Journal of Pediatric Gastroenterology & Nutrition, 54, 664-671.

 

Gastrointestinal Symptoms Scales

-       Varni, J.W., Bendo, C.B., Denham, J., Shulman, R.J., Self, M.M., Neigut, D.A., Nurko S., Patel, A.S, Franciosi, J.P., Saps, M., Verga, B., Smith, A., Yeckes, A., Heinz, N., Langseder, A., Saeed, S., Zacur, G.M., & Pohl, J.F. (2014). PedsQL™ Gastrointestinal Symptoms Module: Feasibility, reliability, and validity. Journal of Pediatric Gastroenterology & Nutrition,59, 347–355.

-       Varni, J.W., Bendo, C.B., Denham, J., Shulman, R.J., Self, M.M., Neigut, D.A., Nurko, S., Patel, A.S, Franciosi, J.P., Saps, M., Yeckes, A., Langseder, A., Saeed, S., & Pohl, J.F. (in press).  PedsQL™ Gastrointestinal Symptoms Scales and Gastrointestinal Worry Scales in pediatric patients with functional and organic gastrointestinal diseases in comparison to healthy controls.Quality of Life Research.

-       Varni, J.W., Kay, M.T., Limbers, C.A., Franciosi, J.P., & Pohl, J.F. (2012). PedsQL™ Gastrointestinal Symptoms Module item development: Qualitative methods.Journal of Pediatric Gastroenterology & Nutrition, 54, 664-671.

 

General Well-Being Scale

-       Varni, J.W., Seid, M., & Kurtin, P.S. (1999).  Pediatric health-related quality of life measurement technology: A guide for health care decision makes.  Journal of Clinical Outcomes Management, 6, 33-40.

-       Hallstrand, T.S., Curtis, J.R., Aitken, M.L., & Sullivan, S.D. (2003). Quality of life in adolescents with mild asthma.  Pediatric Pulmonology, 36, 536-543.

 

Healthcare Satisfaction Generic Module

-      Varni, J.W., Burwinkle, T.M., Dickinson, P., Sherman, S.A., Dixon, P., Ervice, J.A., Leyden, P.A. & Sadler, B.L. (2004). Evaluation of the built environment at a Children’s Convalescent Hospital: Development of the Pediatric Quality of Life Inventory™ Parent and Staff Satisfaction Measures for pediatric health care facilities. Journal of Developmental and Behavioral Pediatrics, 25, 10-25.

-      Li, J., Yuan, L., Wu, Y., Luan, Y., & Hao, Y. (2013). The Chinese version of the Pediatric Quality of Life Inventory™ (PedsQL™) healthcare satisfaction generic module (version 3.0): Psychometric evaluation. Health and Quality of Life Outcomes, 11(1):113.

-      de Souza, F.M., Molina, J., Terreri, M.T., Hilário, M.O., & Len, CA. (2012). Reliability of the Pediatric Quality of Life Inventory - Healthcare Satisfaction Generic Module 3.0 version for the assessment of the quality of care of children with chronic diseases. Journal of Pediatrics (Rio J), 88, 54-60.

 

Healthcare Satisfaction Hematology/Oncology Specific Module

-       Varni, J.W., Quiggins, D.J.L., & Ayala, G.X. (2000).  Development of the Pediatric Hematology/Oncology Parent Satisfaction survey.  Children’s Health Care, 29, 243-255.

 

Health Care Satisfaction Module specific for Hematology/Oncology

-       Varni, J.W., Quiggins, D.J.L., & Ayala, G.X. (2000).  Development of the Pediatric Hematology/Oncology Parent Satisfaction survey. Children's Health Care, 29, 243-255.

 

Infant Scales

-       Varni, J.W., Limbers, C.A., Neighbors, K., Schulz, K., Lieu, J.E.C., Heffer, R.W., Tuzinkiewicz, K., Mangione-Smith, R., Zimmerman, J.J., & Alonso, E.M. (2011). The PedsQL™ Infant Scales: Feasibility, internal consistency reliability and validity in healthy and ill infants.Quality of Life Research, 20, 45-55.

-       Grindler, D.J., Blank, S.J., Schulz, K.A., Witsell, D.L., & Lieu, J.E. (2014). Impact of otitis media severity on children's quality of life.Otolaryngology-Head and Neck Surgery, 151, 333–340.

-       Bell, N., Kruse, S., Simons, R.K., & Brussoni, M. (2014). A spatial analysis of functional outcomes and quality of life outcomes after pediatric injury.Injury Epidemiology, 1:16, 1-10.

 

Multidimensional Fatigue Scale

-       Varni, J.W., Burwinkle, T.M., Katz, E.R., Meeske, K., & Dickinson, P. (2002). 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, 94, 2090-2106.

-       Varni, J. W., Beaujean, A., & Limbers, C. A. (in press). Factorial invariance of pediatric patient self-reported fatigue across age and gender: A multigroup confirmatory factor analysis approach utilizing the PedsQL™ Multidimensional Fatigue Scale.Quality of Life Research.

-       Varni, J.W., Burwinkle, T.M., & Szer, I.S. (2004). The PedsQL™ Multidimensional Fatigue Scale in pediatric rheumatology: Reliability and validity. Journal of Rheumatology; 31, 2494-2500.

-       Varni, J.W., & Limbers, C.A. (2008). The PedsQL™ Multidimensional Fatigue Scale in young adults: Feasibility, reliability and validity in a university student population. Quality of Life Research, 17, 105-114.

-       Panepinto, J.A., Torres, S., Bendo, C.B., McCavit, T.L., Dinu, B., Sherman-Bien, S., Bemrich-Stolz, C., & Varni, J.W. (2014). PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: Feasibility, reliability and validity.Pediatric Blood & Cancer, 61, 171–177.

 

Neurofibromatosis Type 1 Module

-       Nutakki, K., Hingtgen, C.M., Monahan, P., Varni, J.W., & Swigonski, N.L. (2013). Development of the adult PedsQL™ Neurofibromatosis Type 1 Module: Initial feasibility, reliability and validity.Health and Quality of Life Outcomes, 11:21, 1-9

 

Neuromuscular Module

-       Iannaccone, S.T., Hynan, L.S., Morton, A., Buchanan, R., Limbers, C.A., & Varni, J.W. (2009). The PedsQL™ in pediatric patients with Spinal Muscular Atrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Neuromuscular Module.Neuromuscular Disorders, 19, 805-812.

-       Davis, S.E., Hynan, L.S., Limbers, C.A., Andersen, C.M., Greene, M.C., Varni, J.W., & Iannaccone, S.T. (2010). The PedsQL™ in pediatric patients with Duchenne Muscular Dystrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory™ Neuromuscular Module and Generic Core Scales.Journal of Clinical Neuromuscular Disease, 11, 97-109. 

 

Oral Health Scale

-       Steele, M.M., Steele, R.G., & Varni, J.W. (2009). Reliability and validity of the PedsQL™ Oral Health Scale: Measuring the relationship between child oral health and health-related quality of life.Children’s Health Care, 38, 228-224.

 

Pediatric Pain Coping Inventory™

-       Varni, J.W., Waldron, S.A., Gragg, R.A., Rapoff, M.A., Bernstein, B.H., Lindsley, C.B., & Newcomb, M.D (1996). Development of the Waldron/Varni Pediatric Pain Coping Inventory. Pain, 67, 141-150.

 

Pediatric Pain Questionnaire

-       Varni, J.W., Thompson, K.L., & Hanson, V. (1987). The Varni/Thompson Pediatric Pain Questionnaire: I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis.Pain, 28, 27-38.

 

Present Functioning Visual Analogue Scales

-       Sherman, S.A., Eisen, S., Burwinkle, T.M., & Varni, J.W. (2006). The PedsQL™ Present Functioning Visual Analogue Scales: Preliminary reliability and validity.Health and Quality of Life Outcomes, 4:75, 1-10.

 

Rheumatology Module

-       Varni, J.W., Seid, M., Knight, T.S., Burwinkle, T.M., Brown, J., & Szer, I.S. (2002).  The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module.Arthritis and Rheumatism, 2002; 46: 714-725.

 

Sickle Cell Disease Module

-       Panepinto, J.A., Torres, S., Bendo, C.B., McCavit, T.L., Dinu, B., Sherman-Bien, S., Bemrich-Stolz, C., & Varni, J.W. (2013). PedsQL™ Sickle Cell Disease Module: Feasibility, reliability and validity.Pediatric Blood & Cancer, 60, 1338–1344.

-       Panepinto, J.A., Torres, S., & Varni. J.W. (2012). Development of the PedsQL™ Sickle Cell Disease Module items: Qualitative methods.Quality of Life Research, 21, 341-357.

 

Stem Cell Transplant Module

-      Lawitschka, A., Güclü, E.D., Varni, J.W., Putz, M., Wolff, D., Pavletic, S., Greinix, H., Peters, C., & Felder-Puig, R. (in press). Health-related quality of life in pediatric patients after allogeneic SCT: Development of the PedsQL™ Stem Cell Transplant Module and results of a pilot study. Bone Marrow Transplantation.

 

Transplant Module

-       Weissberg-Benchell, J., Zielinski, T.E., Rodgers, S., Greenley, R.N., Askenazi, D., Goldstein, S.L., Fredericks, E.M., McDiarmid, S., Williams, L., Limbers, C.A., Tuzinkiewicz, K., Lerret, S., Alonso, E.M., & Varni, J.W. (2010). Pediatric health-related quality of life: Feasibility, reliability and validity of the PedsQL™ Transplant Module.American Journal of Transplantation, 10, 1677-1685.