Please select the title of the outcome measure or project you are interested in below to reveal a list of relevant publications.

Highlighted Publications

Narayanan UG, Fehlings D, Weir S, Knights S, Kiran S, Campbell K. Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Dev Med Child Neurol. 2006 Oct 1;48(10):804-12. 

Schiariti V, Fayed N, Cieza A, Klassen A, O’donnell M. Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning. Disabil Rehabil. 2011;33(15-16):1330-9. Epub 2010 Nov 10. PMID:21067341 

Carlon S, Shields N, Yong K, Gilmore R, Sakzewski L, Boyd R. A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy. BMC Pediatr. 2010 Nov 9;10:81. doi: 10.1186/1471-2431-10-81. PMID: 21059270; PMCID: PMC2995480. 

Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S. Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev Med Child Neurol. 2009 Aug;51(8):660-9. Review. PMID:19627340 

Additional Publications

Akodu AK, Oluwale OA, Adegoke ZO, Ahmed UA, Akinola TO. Relationship between spasticity and health related quality of life in individuals with cerebral palsy. Nig Q J Hosp Med. 2012 Apr-Jun;22(2):99-102. PMID: 23175906. 

Cohen E, Lacombe-Duncan A, Spalding K, MacInnis J, Nicholas D, Narayanan UG, Gordon M, Margolis I, Friedman JN. Integrated complex care coordination for children with medical complexity: a mixed-methods evaluation of tertiary care-community collaboration. BMC Health Serv Res. 2012 Oct 23;12:366. 

Davidson B, Schoen N, Sedighim S, Haldenby R, Dalziel B, Breitbart S, Fehlings D, Milo-Manson G, Narayanan UG, Drake JM, Ibrahim GM. Intrathecal baclofen versus selective dorsal rhizotomy for children with cerebral palsy who are nonambulant: a systematic review. J Neurosurg Pediatr. 2019 Oct 18:1-9. 

DiFazio R, Shore B, Vessey JA, Miller PE, Snyder BD. Effect of Hip Reconstructive Surgery on Health-Related Quality of Life of Non-Ambulatory Children with Cerebral Palsy. J Bone Joint Surg Am. 2016 Jul 20;98(14):1190-8. doi: 10.2106/JBJS.15.01063. PMID: 27440567. 

DiFazio RL, Miller PE, Vessey JA, Snyder BD. Health-Related Quality of Life and Care Giver Burden Following Spinal Fusion in Children With Cerebral Palsy. Spine (Phila Pa 1976). 2017 Jun 15;42(12):E733-E739. doi: 10.1097/BRS.0000000000001940. PMID: 27792122.  

Difazio RL, Vessey JA, Zurakowski D, Snyder BD. Differences in health-related quality of life and caregiver burden after hip and spine surgery in non-ambulatory children with severe cerebral palsy. Dev Med Child Neurol. 2016 Mar;58(3):298-305. doi: 10.1111/dmcn.12872. Epub 2015 Aug 24. PMID: 26299261. 

Eguia F, Nhan DT, Shah SA, Jain A, Samdani AF, Yaszay B, Pahys JM, Marks MC, Sponseller PD; Harms Study Group. Of Major Complication Types, Only Deep Infections After Spinal Fusion Are Associated With Worse Health-related Outcomes in Children With Cerebral Palsy. Spine (Phila Pa 1976). 2020 Jul 15;45(14):993-999. doi: 10.1097/BRS.0000000000003463. PMID: 32150131. 

Elema A, Zalmstra TA, Boonstra AM, Narayanan UG, Reinders-Messelink HA, V D Putten AA. Pain and hospital admissions are important factors associated with quality of life in non-ambulatory children. Acta Paediatr. 2016 Sep;105(9):e419-25. 

Ferreira ACFM, Eveloff RJ, Freire M, Santos MTBR. The Impact of Oral-Gut Inflammation in Cerebral Palsy. Front Immunol. 2021 Feb 25;12:619262. doi: 10.3389/fimmu.2021.619262. PMID: 33717115; PMCID: PMC7953843. 

Giray E, Şimşek Hİ, Aydoğduoğlu M, Kangal AÇ, Çelik A, Kurt C, Karadağ Saygı E. Pain evaluation in a sample of Turkish children with cerebral palsy and its association with dependency level, verbal abilities, and the quality of life of patients and sociodemographic status, depression, and quality of life of their caregivers. Turk J Phys Med Rehabil. 2018 Feb 23;64(3):222-229. doi: 10.5606/tftrd.2018.1871. PMID: 31453515; PMCID: PMC6657786. 

Hollenbeck SM, Yaszay B, Sponseller PD, Bartley CE, Shah SA, Asghar J, Abel MF, Miyanji F, Newton PO. The Pros and Cons of Operating Early Versus Late in the Progression of Cerebral Palsy Scoliosis. Spine Deform. 2019 May;7(3):489-493. doi: 10.1016/j.jspd.2018.09.002. PMID: 31053320. 

Hwang JH, Varte L, Kim HW, Lee DH, Park H. Salvage procedures for the painful chronically dislocated hip in cerebral palsy. Bone Joint J. 2016 Jan;98-B(1):137-43. doi: 10.1302/0301-620X.98B1.35202. PMID: 26733527. 

Jackson TJ, Yaszay B, Pahys JM, Singla A, Miyanji F, Shah SA, Sponseller PD, Newton PO, Flynn JM, Cahill PJ; Harms Study Group. Intraoperative Traction May Be a Viable Alternative to Anterior Surgery in Cerebral Palsy Scoliosis ≥100 Degrees. J Pediatr Orthop. 2018 May/Jun;38(5):e278-e284. doi: 10.1097/BPO.0000000000001151. Erratum in: J Pediatr Orthop. 2018 Aug;38(7):e417. PMID: 29521937. 

Jain A, Modhia UM, Njoku DB, Shah SA, Newton PO, Marks MC, Bastrom TP, Miyanji F, Sponseller PD. Recurrence of Deep Surgical Site Infection in Cerebral Palsy After Spinal Fusion Is Rare. Spine Deform. 2017 May;5(3):208-212. doi: 10.1016/j.jspd.2016.12.004. PMID: 28449964. 

Jain A, Sponseller PD, Shah SA, Samdani A, Cahill PJ, Yaszay B, Njoku DB, Abel MF, Newton PO, Marks MC, Narayanan UG; Harms Study Group. Subclassification of GMFCS level-5 cerebral palsy as a predictor of complications and health-related quality of life after spinal arthrodesis. J Bone Joint Surg Am. 2016 Nov 2;98(21):1821-1828. 

Jordan C, Geisel G, Alecu JE, Zhang B, Sahin M, Ebrahimi-Fakhari D. Disease Severity and Motor Impairment Correlate With Health-Related Quality of Life in AP-4-Associated Hereditary Spastic Paraplegia. Neurol Genet. 2021 Jul 20;7(4):e605. doi: 10.1212/NXG.0000000000000605. PMID: 34295967; PMCID: PMC8293284. 

Jung NH, Brix O, Bernius P, Schroeder AS, Kluger GJ, Beyerlein A, Weir S, von Kries R, Narayanan UG, Mall V, Berweck S. German Translation of the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire: Test-Retest Reliability and Correlation with Gross Motor Function in Children with Cerebral Palsy. Neuropediatrics. 2014 Oct;45(5):289-93. 

Jung NH, Pereira B, Nehring I, Brix O, Bernius P, Schroeder SA, Kluger GJ, Koehler T, Beyerlein A, Weir S, von Kries R, Narayanan UG, Berweck S, Mall V. Does hip displacement influence health-related quality of life in children with cerebral palsy? Dev Neurorehabil. 2014 Dec 1;17(6):420-5. 

Kenyon LK, Farris J, Brockway K, Hannum N, Proctor K. Promoting self-exploration and function through an individualized power mobility training program. Pediatr Phys Ther. 2015 Summer;27(2):200-6. doi: 10.1097/PEP.0000000000000129. PMID: 25695192. 

Kraus T, Gegenleitner K, Svehlik M, Novak M, Steinwender G, Singer G. Long-term therapy with intrathecal baclofen improves quality of life in children with severe spastic cerebral palsy. Eur J Paediatr Neurol. 2017 May;21(3):565-569. doi: 10.1016/j.ejpn.2017.01.016. Epub 2017 Feb 11. PMID: 28237420. 

Martinez M, Kim SJ, Sabharwal S. Percutaneous Subtrochanteric Osteotomy for Painful Dislocated Hips in Patients With Cerebral Palsy. J Pediatr Orthop. 2017 Mar;37(2):111-120. doi: 10.1097/BPO.0000000000000600. PMID: 26214329. 

Miller DJ, Flynn JJM, Pasha S, Yaszay B, Parent S, Asghar J, Abel MF, Pahys JM, Samdani A, Hwang SW, Narayanan UG, Sponseller PD, Cahill PJ, Harms Study Group. (2019). Improving Health-related Quality of Life for Patients with Nonambulatory Cerebral Palsy: Who Stands to Gain from Scoliosis Surgery? J Pediatr Orthop. 2019 Jul 12. 

Miller DJ, Flynn JJM, Pasha S, Yaszay B, Parent S, Asghar J, Abel MF, Pahys JM, Samdani A, Hwang SW, Narayanan UG, Sponseller PD, Cahill PJ. Improving Health-related Quality of Life for Patients With Nonambulatory Cerebral Palsy: Who Stands to Gain From Scoliosis Surgery? J Pediatr Orthop. 2020 Mar;40(3):e186-e192. 

Miyanji F, Nasto LA, Sponseller P, Shah S, Samdani AF, Lonner BS, Yaszay B, Clements DH, Narayanan UG, Newton PO. Assessing the risk/benefit ratio of scoliosis surgery in CP: Surgery is worth it? J Bone & Joint Surgery, Am. 2018. Apr 4; 100(7):556-563. 

Murphy AM, Milo-Manson G, Best A, Campbell KA, Fehlings D. Impact of modafinil on spasticity reduction and quality of life in children with CP. Dev Med Child Neurol. 2008 Jul;50(7):510-4. doi: 10.1111/j.1469-8749.2008.03019.x. PMID: 18611200. 

Pellegrino LA, Ortolan EV, Magalhães CS, Viana AA, Narayanan UG. Brazilian Portuguese translation and cross-cultural adaptation of the “Caregiver Priorities and Child Health Index of Life with Disabilities” (CPCHILD©) questionnaire. BMC Pediatr. 2014 Feb 1;14(1):30. 

Pettersson K, Bjerke KM, Jahnsen R, Öhrvik J, Rodby-Bousquet E. Psychometric evaluation of the Scandinavian version of the caregiver priorities and child health index of life with disabilities. Disabil Rehabil. 2019 Jan;41(2):212-218. doi: 10.1080/09638288.2017.1378930. Epub 2017 Sep 19. PMID: 28927310. 

Ramstad K, Jahnsen RB, Terjesen T. Severe hip displacement reduces health-related quality of life in children with cerebral palsy. Acta Orthop. 2017 Apr;88(2):205-210. doi: 10.1080/17453674.2016.1262685. Epub 2016 Nov 28. PMID: 27892753; PMCID: PMC5385117. 

Redouane B, Cohen E, Stephens D, Keilty K, Mouzaki M, Narayanan U, Moraes T, Amin R. Parental Perceptions of Quality of Life in Children on Long-Term Ventilation at Home as Compared to Enterostomy Tubes. PLoS One. 2016 Feb 25;11(2):e0149999. 

Sewell MD, Malagelada F, Wallace C, Gibson A, Noordeen H, Tucker S, Molloy S, Lehovsky J. A Preliminary Study to Assess Whether Spinal Fusion for Scoliosis Improves Carer-assessed Quality of Life for Children With GMFCS Level IV or V Cerebral Palsy. J Pediatr Orthop. 2016 Apr-May;36(3):299-304. doi: 10.1097/BPO.0000000000000447. PMID: 25851675. 

Shore BJ, Allar BG, Miller PE, Matheney TH, Snyder BD, Fragala-Pinkham M. Measuring the Reliability and Construct Validity of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) in Children With Cerebral Palsy. Arch Phys Med Rehabil. 2019 Jan;100(1):45-51. doi: 10.1016/j.apmr.2018.07.427. Epub 2018 Aug 18. PMID: 30130519. 

Simsek TT, Sertel M, Yumin ET, Aras B, Narayanan UG. (2019). Validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) in a sample of Turkish non-ambulatory children with cerebral palsy. Turk Pediatri Arsivi. 2019 Mar;54(1):13-27. 

Sung KH, Kwon SS, Cho GH, Chung CY, Encisa C, Menal H, Narayanan UG, Park MS. Differences in responses to English and Korean versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD). Health Qual Life Outcomes. 2020 Aug 17;18(1):282. 

Sung KH, Kwon SS, Narayanan UG, Chung CY, Lee KM, Lee SY, Lee DJ, Park MS. Transcultural adaptation and validation of the Korean version of Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD). Disabil Rehabil. 2015 Jan 1;37(7):620-4. 

Thorley M, Donaghey S, Edwards P, Copeland L, Kentish M, McLennan K, Lindsley J, Gascoigne-Pees L, Sakzewski L, Boyd RN. Evaluation of the effects of botulinum toxin A injections when used to improve ease of care and comfort in children with cerebral palsy whom are non-ambulant: a double blind randomized controlled trial. BMC Pediatr. 2012 Aug 9;12:120. doi: 10.1186/1471-2431-12-120. PMID: 22873758; PMCID: PMC3472230. 

Vivas AC, Pahys JM, Jain A, Samdani AF, Bastrom TP, Sponseller PD, Newton PO, Hwang SW; Harms Study Group. Early and late hospital readmissions after spine deformity surgery in children with cerebral palsy. Spine Deform. 2020 Jun;8(3):507-516. doi: 10.1007/s43390-019-00007-1. Epub 2020 Mar 4. PMID: 32130680. 

Weaver MS, Hanna R, Hetzel S, Patterson K, Yuroff A, Sund S, Schultz M, Schroth M, Halanski MA. A Prospective, Crossover Survey Study of Child- and Proxy-Reported Quality of Life According to Spinal Muscular Atrophy Type and Medical Interventions. J Child Neurol. 2020 Apr;35(5):322-330. doi: 10.1177/0883073819900463. Epub 2020 Feb 3. PMID: 32009500. 

Yaszay B, Sponseller PD, Shah SA, Asghar J, Miyanji F, Samdani AF, Bartley C, Newton PO. Performing a Definitive Fusion in Juvenile CP Patients is a Good Surgical Option. J Pediatr Orthop. 2017 Dec;37(8):e488-e491. doi: 10.1097/BPO.0000000000000793. PMID: 27261965. 

Zalmstra T, Elema A, Huizing K, Reinders-Messelink H, V D Putten A. Longitudinal validation of the Caregiver Priorities and Child Health Index of Life with Disabilities in a Dutch sample of nonambulatory children with severe disabilities. Child Care Health Dev. 2019 May;45(3):409-416. doi: 10.1111/cch.12663. Epub 2019 Apr 3. PMID: 30870582. 

Zalmstra TA, Elema A, Boonstra AM, Maathuis KG, Narayanan UG, V D Putten AA, Reinders-Messelink HA, Vlaskamp C, Lindeboom R. Validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy. Disabil Rehabil. 2015 Jan1;37(5):411-6. 

Zarrinkalam R, Rice J, Brook P, Russo RN. Hip displacement and overall function in severe cerebral palsy. J Pediatr Rehabil Med. 2011;4(3):197-203. doi: 10.3233/PRM-2011-0175. PMID: 22207096. 

Boyer ER, Palmer M, Walt K, Georgiadis AG, Stout JL. Validation of the Gait Outcomes Assessment List questionnaire and caregiver priorities for individuals with cerebral palsy. Dev Med Child Neurol. 2021 Sep 17. doi: 10.1111/dmcn.15054. Epub ahead of print. PMID: 34534360. 

Davids J. The Gait Outcomes Assessment List (GOAL): a new tool to assess cerebral palsy. Dev Med Child Neurol. 2018 Jun;60(6):541. doi: 10.1111/dmcn.13732. Epub 2018 Mar 25. PMID: 29574696. 

Narayanan UG, Davidson B, Weir S. The Gait Outcomes Assessment List (The GOAL): Developing a Meaningful Outcome Measure for Ambulatory Children with Cerebral Palsy. Dev Med Child Neurol. 2011 Oct; 53(S5):79. 

Thomason P, Tan A, Donnan A, Rodda J, Graham HK, Narayanan U. The Gait Outcomes Assessment List (GOAL): validation of a new assessment of gait function for children with cerebral palsy. Dev Med Child Neurol. 2018 Jun;60(6):618-623. 

Dermott JA, Wright FV, Salbach NM, Narayanan UG. Development of the gait outcomes assessment list for lower-limb differences (GOAL-LD) questionnaire: a child and parent reported outcome measure. Health Qual Life Outcomes. 2021 May 5;19(1):139. 

Griffiths AL, Donnan LT, Iobst CA, Kelley SP, Bouchard M, Narayanan UG. The Gait Outcomes Assessment List for Children With Lower Limb Difference (GOAL-LD): Assessment of Reliability and Validity. J Pediatr Orthop. 2021 Jun 3. 

Propp R, McAdam L, Davis A, Salbach N, Weir S, Encisa C, Narayanan, UG. (2019). Development and content validation of the Muscular Dystrophy Child Health Index of Life with Disabilities questionnaire for children with Duchenne muscular dystrophy. Dev Med Child Neurol. 2019 Jan; 61(1): 75-81. 

Narayanan U, Patel S, Propp R, Camp M, Murphy A. Development and Content Validation of the Patient-Reported Outcomes of Fracture Healing (PROOF). 38th Annual Meeting of the European Pediatric Orthopaedic Society (EPOS), Tel Aviv, Israel. 2019 J Child Orthop suppl. 

Shore BJ, Martinkevich P, Riazi M, Baird E, Encisa C, Willoughby K, Narayanan UG; CHOP Investigative Team. Reliability of Radiographic Assessments of the Hip in Cerebral Palsy. J Pediatr Orthop. 2019 Aug;39(7):e536-e541.