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PUBLICATIONS​

Jones, C.M., Baker, J.N., Keesey, R.M., Eliason, R.J., Lanctot, J.Q., Clegg, J.L., Mandrell, B.N., Ness, K.K., Krull, K.R., Srivastava, D.K., Forrest, C.B., Hudson, M.M., Robinson, L.L., & Huang, I. Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians. Quality of Life Research. 2018;27(7):1877-1884.

 

Flynn KE, Kliems H, Saoji, N, Svenson, J, Cox ED. In press. Content Validity of the PROMIS® Pediatric Family Relationships Measure for Children with Chronic Illness. Accepted for publication in Health Qual Life Outcomes. https://hqlo.biomedcentral.com/articles/10.1186/s12955-018-1030-8

Singh A, Dasgupta M, Simpson PM, PanepintoJA (2019). Use of the new pediatric PROMIS measures of pain and physical experiences for children with sickle cell disease. Pediatric blood & cancer, e27633. DOI: 10.1002/pbc.27633

 

Forrest CB, Forrest KD, Clegg JL, de la Motte A, Amaral S, Grossman AB, Furth S (2019) The Impact of Chronic Disease on the Content Validity of PROMIS Pediatric Pain Interference, Fatigue, Sleep Disturbance, and Sleep-related Impairment Measures. Journal of Patient Reported Outcomes. Under review. 

Pierzynski JA, Clegg JL, Forrest CB, Robison JL, Hudson MM, Baker JN, Huang I. Patient-reported outcomes in pediatric cancer survivorship: A qualitative study to elicit the content from cancer survivors and caregivers. (Under Review). BMJ Open 

Singh A, Panepinto J. (In Press). Clinical meaning of PROMIS pain domains for children with sickle cell disease. Blood Advances.

Cox, ED, Connolly, JR, Palta, M, Rajamanickam VP, Flynn KE. Reliability and validity of PROMIS® pediatric family relationships short form in children 8–17 years of age with chronic disease. Qual Life Res (2019). https://doi.org/10.1007/s11136-019-02266-x

PRESENTATIONS

  

Forrest CB. (2017, March). Advances in pediatric person-reported outcomes for clinical research. NIH-FDA Interagency Clinical Outcomes Assessment Working Group Meeting, Silver Spring, MD.

 

Jones CM, Baker JN, Keesey RM, Eliason RJ, Lanctot JQ, Clegg JL, Mandrell B, Ness KK, Krull KR, Srivastava K, Forrest CB, Hudson MM, Robison LL, and Huang I. (2017, June). Disagreement with importance ratings on health-related quality of life (HRQOL) items among childhood cancer survivors, parents, and clinicians: the PEPR Childhood Cancer Survivorship Study. Annual Meeting of the Multinational Association of Supportive Care in Cancer, Washington, D.C.

 

Schanberg L, Gershon R, Becker B, Tucker C, Campbell M, Witter J, and Werner E. (2017, September). Advancing the science of pediatric patient-reported outcomes for children with chronic diseases: An update from the PEPR Consortium. Health Measures User Conference, Chicago, IL.

 

Becker B, Mann C, Yusuf F, Ustinovich V, and Clegg JL. (2017, October). An overview of the Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium. PROMIS Health Organization Conference, Philadelphia, PA.

 

Flynn K, Cox ED, Kliems H, Saoji N, and Svenson J. (2017, October). Validity and clinical utility of the PROMIS family relationships measure in children with chronic conditions. PROMIS Health Organization Conference, Philadelphia, PA.

 

Forrest CB. (2017, November). Pediatric patient-reported outcomes. Grand Rounds, Department of Pediatrics, UCLA, Los Angeles, CA.

 

Reeve BB. (2018, April). Assessing How a Child Feels and Functions Using Patient Reported and Activity Data. Presentation at the Ninth Annual Patient Reported Outcomes Consortium Workshop of the Critical Path Institute, Silver Spring, MD.

 

Paller A, Lai J, Nowinski C, Kaat A, Lund E, Ibler E, Mueller K, Doytcheva K, Shaunfield S, Ramachandran D, Silverberg J, and Cella D. (2018, July). Development of the PROMIS Itch Questionnaire – Child (PIQ-C). Presentation at the at the Society for Pediatric Dermatology.

 

Mann CM, Schanberg L, von Scheven E, Lucas N, Wang M, and Reeve BB. (2018, October). Identifying clinically meaningful severity categories for symptom experience or functional impairment for PROMIS Pediatric measures of anxiety, mobility, and fatigue in Juvenile Idiopathic Arthritis. Poster presentation at ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Singh A, Dasgupta M, Simpson PM and Panepinto JA. (2018, October). Use of the PROMIS new physical health domains and the asthma impact scale in children with an acute asthma exacerbation. Poster presentation at ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Singh A, Dasgupta M, Simpson PM and Panepinto JA. (2018, October). Validation of new Patient Reported Outcome Measurement Information System (PROMIS) measures in children with sickle cell disease. Poster presentation at ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Cox ED, Connolly JR, Palta M, Rajamanickam V, and Flynn KE. (2018, October). Reliability and Validity of PROMIS Pediatric Family Relationships Short Form in Children with Chronic Disease. Poster presentation at ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Nowinski C, Lai J, Paller A, Shaunfield S, Silverberg J, and Cella D. (2018, October). Qualitative development of the PROMIS Itch Questionnaire – Child (PIQ-C). ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Lai J, Paller A, Cella D, and Nowinski C. (2018, October). Psychometric Properties of the PROMIS® Itch Questionnaire – Child (PIQ-C). ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Kaat A, Paller A, Lai J. (2018, October). Parent and Child Agreement on Itch Severity. ISOQOL 25th Annual Conference, Dublin, Ireland.

 

Pierzynski JA, Clegg JL, Mandrell B, Krull K, Forrest CB, Hudson MM, Robinson LR, Baker J, and Huang I. (2018, November). Evaluating content validity of patient-reported outcome measures among childhood cancer survivors and caregivers for use in pediatric survivorship care. 50thCongress of the International Society of Paediatric Oncology, Kyoto, Japan.

Reeve BB (2018, November) Assessing how a child feels and functions using patient-reported and activity data. Invited speaker for Wake Forest University’s 2018 CTSI Methods Conference. Winston Salem, NC.

Reeve BB (2018, December) Assessing how a child feels and functions using patient-reported and activity data. Invited speaker for Children’s Health & Discovery Initiative. Durham, NC.

 

Cox ED, Connolly JR, Palta M, Rajamanickam VP, Flynn KE. 2019. Reliability and validity of PROMIS Pediatric Family Relationships Short Form in Children with Chronic Disease. Poster presented at American Pediatric Association Region VI Meeting, March 15, Madison (WI)

 

Svenson J, Cox ED, Flynn KE, KliemsH, SaojiN (2019). Content Validity of the Pediatric PROMIS Family Relationships Measure for Children with Chronic Illness. Poster presented at American Pediatric Association Region VI Meeting, March 15, Madison (WI)

Kogon A. (2019, April). Mental health in pediatric CKD. World Congress of Nephrology, Melbourne, Australia

Furth, S. (2019, May). MyKidneyHealth Study. Annual CKiD Meeting, Ft. Lauderdale, Florida

ACCEPTED 2019 ISOQOL PRESENTATIONS

Lai J, PallerA, CellaD. Evaluating Validity and Clinical Relevance of the PROMIS Itch Questionnaire-Child (PIQ-C). 

Lu Z, Baker JN, Krull KN, Srivastava K, Robison LL, Hudson MM, Huang I. Novel application of natural language processing and machine learning techniques to analyze qualitative patient-reported outcomes: A report from the PEPR Pediatric Cancer Survivorship Study.  

 

SchuchardJ, Crandall W, Carle AC, Forrest CB. Interpretability of PROMIS Pediatric patient-reported outcome scores for children with inflammatory bowel disease

 

Assessing how a child with cancer functions using patient-reported and objective physical activity data.

 

Longitudinal changes in PROMIS pediatric patient-reported outcomes in children with cancer.

 

Evaluating the association between activity and PROMIS pediatric measures in children with asthma. 

ACCEPTED 2019 PHO POSTER PRESENTATIONS

Baseline Results from the Chronic Kidney Disease Cohort of the NIH PEPR Consortium. Julia Schuchard, Cortney Bruno, Sandra Amaral, Susan L. Furth, & Christopher B. Forrest. Accepted for poster presentation at 2019 PHO Conference.

    

 

Parent-Child Agreement on PROMIS Asthma Impact. Lai JS, Kumar R, Kaat A.

AWARDED GRANTS resulting from the PEPR project infrastructure

Home Oxygen Use for Infants with Bronchopulmonary Dysplasia: Balancing Infant, Family, and Health System Outcomes. K23 Award, PI: Joanne Lagatta, Medical College of Wisconsin faculty mentored by Julie Panepinto. Award dates: 1/1/18 – 12/31/22

 

Life After Recovery In Adult Thrombotic Thrombocytopenic Purpura (TTP): Let's Hear It From The Survivors. K08 Award, PI Deidra Terrell, faculty at University of Oklahoma Health Sciences Center mentored by Julie Panepinto. Mentee has spent time in Julie Panepinto’s lab to learn about longitudinal research and PROMIS.  

Investigating the role of the microbiome and inflammation in acute and chronic pain in patients with sickle cell disease. R01 awarded to Amanda Brandowwith Julie Panepintoas co-investigator and content expert on PROs.Award Dates: 9/1/18-8/31/23

Submitted:

The inflammatory index as a biomarker for pain inpatients with sickle cell disease: R61/R33 Application by Amanda Brandowand Julie Panepinto. Proposal includes assessment of patient reported outcomes. Submitted March 2019.

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