Research Center

For details about this program, please contact Helene Dumas,
Director of Research at (617) 254-3800, ext. 5474.

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The Research Center for Children with Special Health Care Needs is an innovative enterprise devoted to the promotion of evidence-based practice in pediatric rehabilitation and the development, evaluation, and dissemination of effective models of care for children.

Housed within Franciscan Hospital and with consultation from the Health and Disability Research Institute at Boston University, the Research Center provides the infrastructure and expertise to investigate the effectiveness of new interventions and programs and to disseminate the results to a broad community of professionals, purchasers of pediatric services and families.

Research Center

Initiatives

Our research activities are based on evaluating the best outcomes for children with special needs. Our activities include but are not limited to pulmonary rehabilitation, physical rehabilitation, spasticity management, fitness and health promotion for children with disabilities and development of pediatric outcome measures.

Partnerships

Community - The Research Center at Franciscan Hospital partners with national, regional and local private foundations, corporations, local universities, and the Commonwealth of Massachusetts to evaluate and promote excellence in health care and rehabilitative care for children.

National - The Research Center at Franciscan Hospital was the founding member of the Specialized Pediatric Applied Research Collaborative (SPARC), a national group of pediatric post-acute facilities pursuing a common research agenda.

Clinical Excellence

We are committed to outcome management and research methodologies that evaluate the effectiveness of services and ensure that the highest quality is achieved across all levels of the continuum of care.

Professional Training

The Research Center is committed to identifying the educational and training needs of health care professionals and providing specialized, educational programs.

Program Goals

To evaluate the delivery of care

To provide clinical outcomes analyses

To examine new methods of care

To provide training to pediatric medical and rehabilitation professionals

Recreational Resource Guide, updated August 2013

Research in the News

Publications

2012- 2013

Post-Acute Pulmonary Rehabilitation

Dumas HM. Rehabilitation considerations for children with are dependent on long-term mechanical ventilation. ISRN: Rehabilitation.

O’Brien JE, Dumas HM. Hospital length of stay, discharge disposition and reimbursement by clinical program group in pediatric post-acute rehabilitation. Journal of Pediatric Rehabilitation Medicine. 2012; In press.

Physical Activity and Fitness in Children with Disabilities

Fragala-Pinkham MA, Smith HJ, Lombard, K, Barlow C, O’Neil ME. Aquatic Aerobic Exercise for Children with Cerebral Palsy: A Pilot Study. Physiotherapy Theory & Practice. Submitted 1-13.

Fragala-Pinkham MA, O’Neil ME, Bjornson KE, Boyd RN. Editorial-Fitness and Activity in Children and Youth with Disabilities. International Journal of Pediatrics. 2012.

O’Neil ME, Fragala-Pinkham MA, Miles C, Rowland J. The Role and Scope of Pediatric Physical Therapy in Fitness, Wellness, Health Promotion and Prevention. Health Promotion, Fitness and Wellness Work Group, Practice Committee of the Section on Pediatrics, APTA, Alexandria, VA, 2012.

Balemans ACJ, Fragala-Pinkham MA, Lennon N, Thorpe D, Boyd R, O’Neil ME, Bjornson K, Becher JG, Dallmeijer AJ. A Systematic Review of the Clinimetric Properties of Laboratory and Field-based Measures of Aerobic and Anaerobic Fitness in Children with Cerebral Palsy Archives of Physical Medicine & Rehabilitation. Published online 28 September 2012.

O’Neil, ME, Fragala-Pinkham MA. Invited Commentary on “Development of the Early Activity Scale for Endurance for Children With Cerebral Palsy”. Pediatric Physical Therapy. 2012;24:241.

Feehan K, O’Neil ME, Abdalla D, Fragala-Pinkham MA, Kondrad M, Berhane Z, Turchi R. Factors Influencing Physical Activity in Children and Youth with Special Health Care Needs-A Pilot Study. International Journal of Pediatrics. doi:10.1155/2012/583249.

O’Neil ME, Fragala-Pinkham M, Ideishi RI.  Community-based programs for children and youth: Our experiences in design, implementation, and evaluation – Commentary.  Physical & Occupational Therapy in Pediatrics.2012;32(2):111-119.

Pediatric Outcome Measurement

Dumas HM, Fragala-Pinkham MA, Feng T, Haley SM. A Preliminary Evaluation of the PEDI-CAT Mobility Item Bank for Children Using Walking Aids and Wheelchairs. Journal of Pediatric Rehabilitation Medicine.2012;5:29-35.

Dumas HM, Fragala-Pinkham MA. Concurrent Validity and Reliability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test Mobility Domain. Pediatric Physical Therapy. 2102;24:171-176.

Dumas HM, Fragala-Pinkham MA, Haley SM, Ni P, Coster W, Kramer JM, Kao YC, Moed R, Ludlow LH. Computer adaptive test performance in children with and without disabilities: prospective field study of the PEDI-CAT. Disability & Rehabilitation. 2012;34(5):393-401.

Therapy Intervention
Smith HJ. Physical Therapy for a Child with an Acute Onset of Choreoathetosis: A Case Report. Pediatric Physical Therapy.  In press 12-12.

Krebs HI, Fasoli SE, Dipietro L, Fragala-Pinkham M, Hughes R, Stein J, Hogan, N. Motor Learning Characterizes Habilitation of Children with Hemiplegic Cerebral Palsy. Neurorehabilitation and Neural Repair. 2012; epub ahead of print.

Dumas HM, Fragala-Pinkham MA, Rosen EL, Klar D, Lombard K, Smith H, Shewokis PA, O’Neil ME. Cardiorespiratory Response During Physical Therapist Intervention for Infants and Young Children with Chronic Respiratory Insufficiency.Pediatric Physical Therapy.  In press.

2010- 2011

Haley SM, Coster WJ, Dumas HM, Fragala-Pinkham MA, Ni PS, Kramer J, Feng T, Kao YC,  Moed R, Ludlow LH. Accuracy and precision of the Pediatric Evaluation of Disability Inventory computer adaptive tests (PEDI-CAT). Developmental Medicine & Child Neurology.  2011; 53(12):1100-1106.

Fragala-Pinkham MA, Haley SM, O’Neil ME.  Group swimming and aquatic exercise program for children with autism spectrum disorders: A pilot study. Developmental Neurorehabilitation. 2011;14(4):230-241.

Fasoli SE, Fragala-Pinkham MA, Hughes R, Hogan N, Stein J, Krebs I. Upper limb robot-assisted therapy: A new option for children with hemiplegia. Technology and Disability. 2010; 22:193-198.

Dumas HM, Fragala-Pinkham MA, Haley SM. Development of a post-acute hospital item bank for the new Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT). International Journal of Rehabilitation Research2010 May 31.[Epub ahead of print].

Fragala-Pinkham MA, O’Neil ME, Haley SM. Summative evaluation of a pilot aquatic exercise program for children with disabilities. Disability and Health Journal. 2010;3(3): 162-170.

Dumas HM, Fragala-Pinkham MA, Haley SM, Coster WJ, Ying-Chia Kao, Kramer JK, Moed R.Item bank development for a revised Pediatric Evaluation of Disability Inventory (PEDI).  Physical & Occupational Therapy in Pediatrics.2010; 30(3):168-184.

Choksi A, Townsend EL, Dumas HM, Haley SM. Functional recovery in children and adolescents with spinal cord injury. Pediatric Physical Therapy. 2010; 22(2):214-221.

Dumas HM, Rosen EL, Haley SM, Fragala-Pinkham MA, Ni P, O’Brien JE. Measuring physical function in children with airway support: a pilot study using computer adaptive testing. Developmental Neurorehabilitation. 2010;13(2):95-102.

Haley SM, Coster WJ, Kao YC, Dumas HM, Fragala-Pinkham MA,, Kramer JM, Ludlow LH, Moed R. Lessons from use of the Pediatric Evaluation of Disability Inventory (PEDI): Where do we go from here? Pediatric Physical Therapy.2010;22(1):69-75.

2008- 2009

Retarekar R, Fragala-Pinkham MA, Townsend EL. Effects of aquatic aerobic exercise for a child with cerebral palsy: single subject design. Pediatric Physical Therapy. 2009;21(4):336-344. 

Tucker CA, Gorton GE, Watson K, Fragala-Pinkham MA, Dumas HM, Montpetit K, Bilodeau N, Ni PS, Hambleton RK, Haley SM. Development of a parent-report computer-adaptive test to assess physical functioning in children with cerebral palsy I: lower-extremity skills. Developmental Medicine & Child Neurology. 2009;51(9)717-724.

Tucker CA, Montpetit K, Bilodeau N, Gorton GE, Watson K, Fragala-Pinkham MA, Dumas HM, Ni PS, Hambleton RK, Haley SM. Development of a parent-report computer-adaptive test to assess physical functioning in children with cerebral palsy II: upper-extremity skills Developmental Medicine & Child Neurology. 2009;51(9):725-731.

Berry JG, Graham DA, Graham RJ, Zhou J, Putney HL, O’Brien JE, Roberson DW, Goldmann DA. Predictors of clinical outcomes and hospital resource use of children after tracheotomy: Pediatrics. 2009;124(2):563-572.

Fragala-Pinkham MA, Dumas HM, Boyce ME, Peters CY, Haley SM. Evaluation of an adaptive ice skating program for children with disabilities. Developmental Neurorehabilitation. 2009;12(4):215-223.

Haley SM, Fragala-Pinkham MA, Dumas HM, Ni PS, Gorton GE, Watson K, Montpetit K, Bilodeau N, Hambleton R, Tucker CA. Evaluation of an item bank for a computerized adaptive test of activity in children with cerebral palsy. Physical Therapy. 2009;89(6):589-600.

O’Brien JE, Dumas HM, Haley SM, Peters CY. Development and evaluation of a minimum data set for children with airway support for transfers between acute and post-acute care. Developmental Neurorehabilitation. 2009;12(3):158-163.

Dumas HM, Haley SM, Boyce ME, Peters CY, Mulcahey MJ. Self-report measures of physical function for children and youth with spinal cord injury: Current tools and an option for the future. Developmental Neurorehabilitation. 2009; 12(2):113-118

Haley SM, Dumas HM, Fragala-Pinkham MA, Ni PS, Gorton GE, Watson K, Montpetit K, Bilodeau N, Hambleton R, Tucker CA. Global physical health scale for children with cerebral palsy: Initial psychometric testing of the item bank. Quality of Life Research. 2009; 18;359-370.

Fragala-Pinkham MA, Dumas HM, Barlow CA, Pasternak A. An aquatic physical therapy program for children and youth with disabilities: Case series. Pediatric Physical Therapy. 2009; 21(1): 68-78.

Fasoli SE, Fragala-Pinkham MA, Hughes R, Stein J, Krebs HI, Hogan N. Robotic therapy and botulinum toxin type A: A novel intervention approach for cerebral palsy.American Journal of Physical Medicine & Rehabilitation. 2008;87(12):1022-1026.

Fasoli SE, Fragala-Pinkham MA, Hughes R, Hogan N, Krebs HI, Stein J, Upper limb robotic therapy for children with hemiplegia. American Journal of Physical Medicine & Rehabilitation. 2008,87(11):929-936.

Dumas HM, Watson K, Fragala-Pinkham MA, Haley SM, Bilodeau N, Montpetit K, Gorton G, Mulcahey MJ, Tucker CA. Using cognitive interviewing for ttest items to assess physical function in children with cerebral palsy. Pediatric Physical Therapy.2008;20:356-362.

Tucker CA, Haley SM, Dumas HM, Fragala-Pinkham MA, Watson K, Gorton GE, Montpetit K, Bilodeau N. Physical function for children and youth with cerebral palsy: Item bank development for computer adaptive testing. Journal of Pediatric Rehabilitation Medicine. 2008;1(3):245-253.

Fragala-Pinkham MA, Haley SM, O’Neil ME. Group aquatic exercise for children with disabilitiesDevelopmental Medicine & Child Neurology. 2008;50(11):822-827.  

2006- 2007

O’Brien JE, Dumas HM, Haley SM, Ladenheim B, Mast J, Burke SA, Birnkrant DJ, Whitford K, Palazzo R, Neufeld JA, Kharasch VS. Ventilator weaning outcomes in chronic respiratory failure in children. International Journal of Rehabilitation Research.2007;30(2):171-174.

Fragala-Pinkham MA, Bradford L, Haley SM. Evaluation of the nutrition counseling component of a fitness program for children with disabilities. Pediatric Rehabilitation.2006;9(4):378-388.

O’Brien JE, Birnkrant D, Dumas HM, Haley SM, Burke SA, Graham RJ, Kharasch VS. Weaning children from mechanical ventilation in a post-acute setting. Pediatric Rehabilitation. 2006;9(4):365-372.

Derosa MA, Raczek AE, Saris-Baglama RN, Dumas HM, Fragala-Pinkham MA, Ware JE. Comparing the performance of physical and social functioning survey items in children with and without disabilities. Developmental Medicine & Child Neurology.2006; Supplement No. 106, 48:29-30.

Saris-Baglama RN, Raczek AE, Derosa MA, Dumas HM, Fragala-Pinkham MA, Ware JE. Multiple meanings: how pediatric health survey items are understood by clinicians and parents of children with and without disabilities. Developmental Medicine & Child Neurology. 2006; Supplement No. 106, 48:34-35.

Haley SM, Ni PS, Ludlow LH, Fragala-Pinkham MA. Measurement precision and efficiency of multidimensional computer adaptive testing of physical functioning using the Pediatric Evaluation of Disability Inventory. Archives ofPhysical Medicine & Rehabilitation. 2006;87(9):1223-1229.

Haley SM, Fragala-Pinkham MA, Ni PS. Sensitivity of a computer adaptive assessment for measuring functional mobility changes in children enrolled in a community fitness program. Clinical Rehabilitation. 2006;20(7):616-622.

Haley SM, Fragala-Pinkham MA, Dumas HM, Ni PS, Skrinar AM, Cox GF. A physical performance measure for individuals with Mucopolysaccharidosis Type I (MPS I).Developmental Medicine & Child Neurology. 2006;48(7):576-581.

Fragala-Pinkham MA, Haley SM, Goodgold S. Evaluation of a community-based fitness program for children with disabilities. Pediatric Physical Therapy. 2006;18(2):159-167.

Haley SM, Fragala-Pinkham MA Interpreting change scores of tests and measures used in physical therapy.Physical  Therapy.2006;86(5):735-43.

O’Neil ME, Fragala-Pinkham MA, Westcott SL, Martin K, Chiarello LA, Valvano J, Rose RU.  Physical therapy clinical management recommendations for children with cerebral palsy – spastic diplegia: Achieving functional mobility outcomes. Pediatric Physical Therapy. 2006;18(1):49-72.

2004- 2005

Fragala-Pinkham MA, Haley SM, Rabin JP, Kharasch VS. A fitness program for children with disabilities. Physical Therapy. 2005;85(11):1182-1200.

Flood GM, Dumas HM, Haley SM. Central auditory processing and social functioning following brain injury in children. Brain Injury. 2005;19(12):1019-1026.

Kharasch VS, Hamilton NTH, Dumas HM, Haley SM, Specht L, Colin AA. Head circumference and chronic positive pressure ventilation in children. Child’s Nervous System. 2005;21(11):986-990.

Hull EM, Dumas HM, Crowley RA, Kharasch VS. Tracheostomy speaking valves for children: tolerance and clinical benefits. Pediatric Rehabilitation. July–September 2005;8(3):214-219.

Haley SM, Fragala-Pinkham MA, Latham NK, Skrinar AM, Cogswell, D. The emerging role of the pediatric physical therapist in evaluation and intervention for individuals with Lysosomal Storage Diseases. Pediatric Physical Therapy. 2005;17(2):128-139.

Bedell GM, Cohn ES, Dumas HM. Exploring parents’ use of strategies to promote social participation of school-age children with acquired brain injuries. American Journal of Occupational Therapy. 2005;59(3):273-284.

Haley SM, Raczek AE, Coster WJ, Dumas HM, Fragala-Pinkham MA. Assessing mobility in children using a computer adaptive testing version of the Pediatric Evaluation of Disablity Inventory. Archives of Physical Medicine and Rehabilitation. 2005; 86(5):932-939.

Baens-Ferrer C, Roseman M, Dumas HM, Haley SM. Parental perceptions of oral health-related quality of life for children with special needs: impact of oral rehabilitation under general anesthesia. Pediatric Dentistry. 2005;27(2):137-142.

Lewis C, Fragala-Pinkham MA. Effects of aerobic conditioning and strength training on a child with Down syndrome: a case study.Pediatric Physical Therapy. 2005;17(1):30-36.

O’Brien JE, Dumas HM, Graham RJ, Kharasch VS. Breath of Fresh Air: Establishing a minimum data set for pediatric pulmonary rehabilitation. Advance for Directors in Rehabilitation. 2005;14(2):57-58.

Haley SM, Fragala MA, Ni PS, Skrinar AM, Corzo D. A computer adaptive testing approach for assessing physical functioning in children and adolescents.Developmental Medicine &Child Neurology. 2005;47(2):113-120.

Haley SM, Fragala-Pinkham MA, Ni PS, Skrinar AM, Kaye EM. Pediatric physical functioning reference curves. Pediatric Neurology. 2004;31(5):333-341.

Dumas HM, Haley SM, Carey TM. The relationship between functional mobility and the intensity of physical therapy intervention in children with traumatic brain injury.Pediatric Physical Therapy. 2004;16(3):157-164.

Haley SM, Graham RJ, Dumas HM. Outcome rating scales in pediatric head injury.Journal of Intensive Care Medicine. 2004;19(4)205-219.

Graham RJ, Dumas HM, O’Brien JE, Burns JP. Congenital neurodevelopmental disabilities and an intensive care unit: defining a population. Pediatric Critical Care Medicine. 2004;5(4):321-328.

Dumas HM, Fragala MA, Haley SM, Skrinar A, Wraith JE, Cox GF. Physical performance testing in MPS I: A pilot study. Pediatric Rehabilitation. 2004;7(2):125-131.

Dumas HM, Haley SM, Ludlow LH, Carey TM.  Recovery of ambulation during inpatient rehabilitation: physical therapist prognosis for children and youth with traumatic brain injury. Physical Therapy. 2004;84(3):232-242.

2002- 2003

O’Neil ME, Fragala MA, Dumas HM. Physical therapy intervention for children with cerebral palsy who receive botulinum toxin A injections. Pediatric Physical Therapy.2003;15(4):204-215.

Dumas HM, Bedell GM, Hamill MS. Strategies to promote activity performance and participation in children with acquired brain Injuries. International Journal of Rehabilitation Research. 2003;26(4):303-308.

Haley, SM, Fragala MA, Aseltine RA, Pensheng N, Skrinar AM. Development of a disease-specific disability instrument for Pompe Disease. Pediatric Rehabilitation. 2003;6(2):77-84.

Iyer LV, Haley SM, Watkins MP, Dumas HM. Establishing minimal clinically important differences for scores of the Pediatric Evaluation of Disability Inventory during inpatient rehabilitation. Physical Therapy. 2003;83(10):888-898.

Haley SM, Dumas HM, Rabin JP, Ni PEarly recovery of walking in children and youth with traumatic brain injury. Developmental Medicine & Child Neurology.2003;45(10):671-675.

Haley, SM, Fragala MA, Skrinar AM. Pompe disease and physical disability.Developmental Medicine & Child Neurology. 2003;45(9):618-623.

Kothari DH, Haley SM, Gill-Body KM, Dumas HM. Measuring functional change in children with acquired brain injury (ABI): Comparison of generic and ABI-specific scales using the Pediatric Evaluation of Disability Inventory (PEDI). Physical Therapy. 2003;83(9):776-785.

Fragala MA, Goodgold S, Dumas HM. Effects of lower extremity passive stretching: pilot study of children and youth with severe limitations in self-mobility. Pediatric Physical Therapy. 2003;15(3):167-175.

Kharasch VS, Haley SM, Dumas HM, Ludlow LH, O’Brien JE. Oxygen and ventilator weaning during inpatient pediatric pulmonaryrehabilitation. Pediatric Pulmonology. 2003;35(4):280-287.

Tokcan G, Haley SM, Gill-Body K, Dumas HM. Item-specific functional recovery in children and youth with acquired brain injury. Pediatric Physical Therapy. 2003;15(1):16-22.

Dumas HM, Haley SM, Carey TM, Ludlow LH,Rabin JP. Lower extremity spasticity as an early marker of ambulatory recovery following traumatic brain injury.Child’s Nervous System. 2003;19(2):114-8.

Kharasch V. Non-invasive positive pressure ventilation: principles and applications.Pediatric Pulmonology. 2002;34(1);89. (Book Review)

Cushman DG, O’Brien JE, Dumas HM, Haley SM, Kharasch VS. Re-admissions to inpatient pediatric pulmonary rehabilitation. Pediatric Rehabilitation 2002;5(3):133-139.

Vervoort VS, Smith RJH, O’Brien J, Schroer, Abbott A, Stevenson RE, Schwartz CE. Genomic rearrangements of EYA1 account for a large fraction of families with BOR syndrome. European Journal of Human Genetics. 2002;10(11):757-766.

Dumas HM, Carey TM. Motor skill and mobility outcomes of children with traumatic brain injury: annotated bibliography. Physical & Occupational Therapy in Pediatrics.2002;22(3/4):73-100.

Fragala MA, O’Neil ME, Russo KJ, Dumas HM. Impairment, disability and satisfaction outcomes after lower extremity botulinum toxin A injections for children with cerebral palsy. Pediatric Physical Therapy. 2002;14(3):132-144.

Dumas HM, Haley SM, Ludlow LH, Rabin JP. Functional recovery in pediatric traumatic brain injury during inpatient rehabilitation.  American Journal of Physical Medicine & Rehabilitation. 2002;81(9):661-669.

Dumas HM, Haley SM, Steva BJ. Functional changes during inpatient rehabilitation for children with musculoskeletal diagnoses. Pediatric Physical Therapy. 2002;14(2):85-91.

O’Brien JE, Dumas HM, Haley SM, O’Neil ME, Renn M, Bartalocci T, Kharasch VS. Clinical findings and resource use of infants and toddlers dependent on ventilators.Clinical Pediatrics. 2002;41(3):155-162.

Fragala MA, Haley SM, Dumas HM, Rabin JP. Classifying mobility recovery in children and youth with brain injury following hospital-based rehabilitation. Brain Injury.2002;16(2):149-160.

Crowley R. Nourishing young lives. Advance for Directors in Rehabilitation. February, 2002.

Crowley R. Pediatric feeding solutions.Advance for Speech-Language Pathologists & Audiologists.February, 2002.

2000- 2001

Dumas HM, Cushman DG, O’Brien JE, Costello, L. Family-centered information. Rehab Management. December, 2001.

Dumas HM, Bedell G, Haley SM, Hull E. Social function changes in children and adolescents with acquired brain injury during inpatient rehabilitation. Pediatric Rehabilitation. 2001;4(4):177-185. 

Dumas HM, Haley SM, Fragala MA, Steva BJ. Self-care recovery of children and adolescents with acquired brain injury: descriptive analysis using the Pediatric Evaluation of Disability Inventory (PEDI) self-care classification levels. Physical & Occupational Therapy in Pediatrics. 2001;21(2/3):7-27.

Dumas HM, Haley SM, Rabin JP. Short-term durability and improvement of functional outcomes in pediatric brain injury. Brain Injury. 2001;15(10):891-902.

Dumas HM, Fragala MA, O’Neil ME. Expert consensus on physical therapist intervention following Botulinum Toxin A injection for children with cerebral palsy.Pediatric Physical Therapy. 2001;13(3):122-132.

Dumas HM. Clinical review of the Pediatric Evaluation of Disability Inventory. Pediatric Physical Therapy. 2001;13(1):47-48.

Haley SM, Dumas HM, Ludlow LH. Variation by diagnostic and practice pattern groups in the mobility outcomes of inpatient rehabilitation programs for children and youth.Physical Therapy. 2001;81(8):1425-1436.

Dumas HM, Francesconi S. Aquatic therapy in pediatrics: annotated bibliography.Physical & Occupational Therapy in Pediatrics. 2001;20(4):63-78.

Haley SM, Russo KJ. Musculoskeletal outcomes in pediatric physical therapy practice. Orthopedic Physical Therapy Clinics of North America. 2000;9(1):17-36.

Dumas HM, Fragala MA, O’Neil, ME, Rabin JP. Using Botox® to manage spasticity in children. Rehab Management. August/September 2000.