Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study

Abstract

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the “Charting the Territory” study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.

Keywords:

• pediatric palliative care
• hospice
• neuropathic pain
• palliative
• life-limiting

Supplementary material

List of IRBs and Ethics Committees

Study sponsor: Canadian Institutes of Health Research (CIHR MOP-89984)

Participating sites

1. Calgary (Alberta Children’s Hospital – Dr Sharron Spicer) – The Conjoint Health Research Ethics Board (CHREB) (University of Calgary)

2. Edmonton (Stollery Children’s Hospital – Dr Dawn Davies) – Health Research Ethics Board (University of Alberta)

3. Toronto (The Hospital for Sick Children – Dr Adam Rapoport) – Research Ethics Board (SickKids)

4. Ottawa (Children’s Hospital of Eastern Ontario – Dr Christina Vadeboncoeur) – Research Ethics Board (CHEO Research Institute)

5. Montreal (Montreal Children’s Hospital – Dr Stephen Liben – Research Ethics Board (McGill University Health Center)

6. Vancouver – The University of British Columbia/Children’s and Women’s Health Centre of British Columbia Research Ethics Board (UBC C&W REB)

7. Halifax – Research Ethics Office (IWK Health Centre Research)

8. Gillette Children’s in St Paul – Institutional Review Board (IRB) (University of Minnesota)

9. Children’s Hospitals and Clinics of Minnesota – Institutional Review Board (IRB) (Children’s Hospitals and Clinics of Minnesota)

Institutions

1. York University ON – Office of Research Ethics (ORE), Human Participants Review Sub-Committee

2. UCSF – Committee on Human Research (CHR)

3. UVIC – Human Research Ethics Board (HREB)

4. U Waterloo – Office of Research Ethics

5. Laurier – Research Ethics Board (Wilfrid Laurier University)

Hospices

Canuck Place Children’s Hospice Ethics Committee

Acknowledgments

We thank Laurie Foster, Ashley Young, Michele Gilbert and Dr Elizabeth Gilles for their efforts in recruiting families and collecting data. Leanne Feichtinger and Amy Tan graciously undertook data entry and produced initial statistical reports. We also thank Dr Dave Watson and Amanda Nickel for their additional statistical guidance, and the families who generously shared their time and insights into their personal journeys with us. This study was funded by a grant from the Canadian Institutes of Health Research (CIHR MOP-89984).

Disclosure

The authors report no conflicts of interest in this work.