At Gillette, we understand the importance of addressing pain in people who have disabilities and complex medical conditions. Pain and comfort research focuses on providing better outcomes, relief and improved patient experiences.

  • Medical Champion: Todd Dalberg, DO
  • Clinical Scientists: Chantel Barney, PhD
  • University of Minnesota Collaborator: Frank Symons, PhD
  • Clinical Research Coordinator: Lisa Lykken
  • Clinical Research Specialist: Kristin Frenn, MPH

Characterizing Pain Experience and Somatosensory Function in Neurodevelopmental Disabilities

Many people who have intellectual and developmental disabilities (IDDs) can’t communicate or express pain in typical ways, making it difficult for care providers to recognize and interpret patients’ experiences. People who have IDDs often have other chronic health conditions and undergo procedures that are likely to cause pain. This means they’re at risk for experiencing undetected or undertreated pain.

To manage pain more effectively in people who have IDDs, our research focuses on deciphering pain and pinpointing somatosensory pathways (the sensory system that triggers pain in the body). This involves finding new, noninvasive ways to document pain experience, pain expression, and somatosensory function in people who have IDDs.

Select Ongoing Studies:

  • Investigation of the psychometric properties of repeatedly assessed bio-behavioral markers for pain in non-verbal patients (in Rett Syndrome).
  • Chantel Barney, PhD: Evaluating nociceptive pathways in Rett syndrome via heat evoked potentials.
  • Frank Symons, PhD: Intrathecal Baclofen and Pain Outcomes in Cerebral Palsy.

Procedural Pain Management and Comfort Research

Sometimes the procedures and surgeries that lead to improved long-term outcomes for our patients cause unavoidable short-term pain during recovery. To provide the best possible outcomes for patients, our research focuses on measuring pain and on the effectiveness of associated treatments. We focus on short and long-term pain, documenting methods for relieving pain after surgery and assessing associated surgical outcomes. The results of these studies help improve patient experiences and inform our clinical practice guidelines.

Select Ongoing Studies:

  • Told Dahlberg, DO: Inpatient adaptive yoga for pain and comfort.
  • Told Dahlberg, DO:  Chronic pain outcomes following non-pharmacological treatments provided in a pediatric tertiary pain clinic.
  • Chantel Barney, PhD: Randomized controlled trial of virtual reality for pain management in a specialty rehabilitation context.
  • Chantel Barney, PhD: A Randomized Controlled Trial of Virtual Reality for Pain Management in the Post-Operative Period Following Orthopedic Surgery.

Recent Publications

  • Barney, C. C. (2015). Reduced pain threshold documented in children with down syndrome. Developmental Medicine and Child Neurology, 57(11), 988-989. doi:10.1111/dmcn.12845 [doi]
  • Barney, C. C., Hoch, J., Byiers, B., Dimian, A., & Symons, F. J. (2015). A case-controlled investigation of pain experience and sensory function in neuronal ceroid lipofuscinosis. The Clinical Journal of Pain, 31(11), 998-1003. doi:10.1097/AJP.0000000000000192 [doi]
  • Symons, F. J., Tervo, R. C., Barney, C. C., Damerow, J., Selim, M., McAdams, B., . . . Kennedy, W. (2015). Peripheral innervation in children with global developmental delay: Biomarker for risk for self-injurious behavior? Journal of Child Neurology, 30(13), 1722-1727. doi:10.1177/0883073815579704 [doi]
  • Symons FJ, ElGhazi I, Reilly BG, Barney CC, Hanson L, Panoskaltsis-Mortari A, Armitage IM, Wilcox GL. (2015) Can Biomarkers Differentiate Pain and No Pain Subgroups of Nonverbal Children with Cerebral Palsy? A Preliminary Investigation Based on Noninvasive Saliva Sampling. Pain Medicine (Malden, Mass.), 16(2), 249-256. doi:10.1111/pme.12545 [doi]
  • Barney, C.C., Stibb, S.M., Merbler, A.M., Summers, R.L.S., Deshpande, S., Krach, L.E., Symons, F.J. (in press). Psychometric properties of the brief pain inventory modified for proxy report of pain interference in children with cerebral palsy with and without cognitive impairment. Pain Report
  • Dalberg, T., Friebert, S., Neil McNinch. Perceptions of Barriers and Facilitators to Early Integration of Pediatric Palliative Care: A National Survey of Pediatric Oncology Providers. Pediatr Blood Cancer.
  • Barney, C. C., Tervo, R., Wilcox, G. L., & Symons, F. J. (2017). A Case-Controlled Investigation of Tactile Reactivity in Young Children With and Without Global Developmental Delay. American journal on intellectual and developmental disabilities, 122(5), 409-421. doi:10.1352/1944-7558-122.5.409 [doi]
  • Barney, C.C., Merbler, A.M., Quest, K., Byiers, B.J., Wilcox, G.L., Schwantes, S., Roiko, S.A., Feyma, T., Beisang, A., & Symons, F.J. A case-controlled comparison of postoperative analgesic dosing between girls with Rett syndrome and girls with and without developmental disability undergoing spinal fusion surgery. Pediatr Anaesth 2017:27(3); 290-99.
  • Byiers, B., Barney, C., Ehrhardt, M., Panoskaltsis-Mortari, A., Feyma, T., Beisang, A., Symons, F.J. Initial observations of salivary brain-derived neurotrophic factor levels in Rett syndrome. Pediatr Neurol 2017 [Epub ahead of print].