Local excellence leads to national guidelines for paediatric pain management

Pain impacts us all. One in five children will deal with chronic pain before they reach the age of 18. Across the country, hospitalized children experience an average of six painful procedures every 24 hours, and as many as 14 procedures for babies in the neonatal intensive care unit. All children, even healthy ones, will experience pain at some point in their lifetime.

Pain has short- and long-term consequences if untreated or poorly managed. Painful procedures in infancy can increase pain sensitivity, impact development, health-care avoidance across the lifespan, and contribute to vaccine hesitancy. Chronic pain in adolescence may lead to persistent pain in adulthood, and also increase risk for mental illness, opioid use and socioeconomic disparities. It is estimated that the direct and indirect costs of pain in Canada annually are about $40 billion.

To ensure that all children and families have safe, equitable and reliable access to treatments for pain, Solutions for Kids in Pain (SKIP), in partnership with the Health Standards Organization (HSO) of Canada, leading experts, and people with lived experience co-designed the first national standard for managing pain in Canada.

Dr. Katie Birnie, PhD, assistant professor at the Alberta Children’s Hospital Research Institute at the Cumming School of Medicine and associate scientific director for SKIP, chaired the Health Standards Working Group along with 14 experts in paediatric pain management. Voices from across the country included physicians, physical therapists, psychologists, child life specialists, health administrators, nurses, international experts, and youth and family partners with pain experiences.

Published on April 3, 2023, these guidelines are the only national standard that exists for pain management anywhere in the world.

Leaders in paediatric pain management

This is an area in which the University of Calgary and Alberta Children’s Hospital are leading the way in Canada and around the world.

“Canada is a world leader in producing new knowledge about children's pain. However, we know from research that's been conducted across the country there is a huge gap between what we know about how to manage children's pain and what actually happens in day-to-day care,” says Birnie.

“That’s where these standards come in,” she explains. “The value of a standard is that it engages organizational leaders and supports a culture shift — positioning paediatric pain management as a priority and weaving it into the fabric of the organization.”

The national pain standards provide an opportunity to leverage research evidence to inform how health care is delivered to all children in Canada.

“This health standard supports a cultural shift to ensure that every child who is seen within any hospital in Canada, whether visiting a children's hospital, community/regional hospital, or rehabilitation hospital, can have quality, equitable pain management,” says Birnie.

Commitment to person-centred care

By its very nature, pain is a personal experience — it can only be known by the person experiencing the pain. Accordingly, the standard highlights the child and family as equal and important members of the health team involved in the child's pain management.

Justine Fehr, who serves on a number of patient advisory committees, has experience with chronic pain personally, and through her role as a child development specialist and caregiver for clients with complex medical care needs. “Engaging patients and families is going to look different for everyone but providing them with the opportunity to engage in their care is the first step,” says Fehr.

“Providing choices helps build a sense of autonomy and confidence in a child who may not have a choice about what treatment is required — but can be part of a positive experience in a health-care setting for them.

“The national standard is a tool that has been created with input from a wide range of experts on all sides of the spectrum with a goal of empowering both health care teams and families,” says Fehr. “My hope as we move forward is that it will be well utilized to benefit all patients, families, caregivers and practitioners in all care settings.”

Commitment to excellence in care at Alberta Children’s Hospital

The Alberta Children’s Hospital (ACH) is one of 14 hospitals across the world and the second in Canada to receive ChildKind Certification. ChildKind is an international designation for excellence in paediatric pain management and recognizes institutional commitment to incorporate equitable and safe pain management to kids and families. Programs like Commitment to Comfort that promote patient comfort by helping to lessen pain and distress during medical procedures can be scaled up to other care settings across the country.

“Commitment to Comfort provides tangible resources across ACH for care providers, patients and families,” says Sandy Baggott, child life specialist lead at the Alberta Children’s Hospital, and member of the pain standards working group. Her goal is to leverage the expertise of researchers and practitioners to ensure all staff feel empowered and confident in paediatric pain management.

“The standards offer a road map to health organizations about what's needed for pain education, training, assessment, and management what is needed for transitions in care and quality improvement,” says Baggott.