Systematic Approach Needed for Evaluation of Pain in Children with Medical Complexities

A systematic approach is necessary when evaluating pain in children with medical complexities who cannot verbally communicate pain, according to a new study.

The study, “CE: Original Research Pain in Nonverbal Children with Medical Complexity A Two-Year Retrospective Study,” was published in the American Journal of Nursing.

Pain is a basic symptom of many medical conditions. Determining its cause is critical to making an accurate diagnosis. But many children with medical complexities either cannot communicate pain verbally or have difficulty doing so.

Children with medical complexities can be defined as those who have a congenital or acquired multisystem disease, a severe neurologic condition with significant functional impairment, a dependence on technologies for daily living, or a combination of these factors.

Assessing pain in this patient population can be challenging, leading to delays in identifying the source of pain and its subsequent management. These delays in recognizing and treating pain can lead to increased morbidity when the cause requires rapid treatment.

“While most kids can be in and out of the primary care provider’s office in under an hour for an ear infection, children with complex needs stay in the hospital for a week just to find the ear infection,” lead author Brenna L. Quinn, PhD, at the Solomont School of Nursing at the University of Massachusetts Lowell, said in a press release.

“Identifying pain early so teams may get to work finding and addressing the source is essential in avoiding long hospital stays, family stress, poking and prodding, or even surgery and death,” she said.

There are more than 40 pain assessment tools to use with infants and children who cannot self-report their pain because of medical issues. Despite the availability of these tools, assessment of pain in children with medical complexities remains a challenge, as a wide range of pain-associated behaviors exist.

Therefore, researchers conducted a study focused on three goals: describe the signs and symptoms that parents of nonverbal children with medical complexities found most worrisome, determine the causes of pain in these children, and identify nursing pain assessment practices.

Using a retrospective chart review, researchers identified the initial presenting symptoms, cause of pain, and nursing documentation of 46 patients seen at a children’s hospital Complex Care Service who were admitted for pain.

The patients ranged from infants to young adults (average age 13). Most had several chronic conditions, most commonly seizure disorders and cerebral palsy, and all were unable to verbally communicate their pain — where they were hurting, how much pain they were experiencing, or whether they were in pain at all.

Among the signs and symptoms that parents found most worrisome and that required further evaluation, the most common were irritability, pain, feeding intolerance, and “not acting like herself [or himself],” researchers noted.

On average, five diagnostic studies were conducted to identify the cause of pain, and four specialty services were consulted during the time of admission. While in the hospital, children underwent an average of seven assessments per day. Because these patients were not able to communicate their pain, nurses conducted pain assessments approximately once every three hours and used different assessment tools based on observable pain behaviors, such as facial expressions or crying.

Regarding the cause of pain, the types of diagnosis at discharge included urinary tract infection (30%), seizures (13%), constipation (20%), chronic pain (22%), failure to thrive (7%), dehydration (7%), and subdural hematoma (collection of blood outside the brain, 2%).

“Like all patients, nonverbal children with medical complexity require a balance of standardized and individualized care,” researchers wrote.

Researchers suggest that a systematic approach in evaluating pain can help the diagnostic process become more thorough and efficient. This approach should include consulting parents regarding changes in a child’s behavior; assessing the presence of pain even when a child appears to be sleeping or when there are indications of a change in mental status; use pain assessment tools best matched to the patient’s cognitive abilities; rule out life-threatening sources of pain, and do not overlook common sources of pain such as infection or constipation.

“Although children with medical complexity represent a small percentage of the pediatric population, they use a high proportion of health care services. When pain assessment is inadequate or lacking, these children suffer unnecessarily,” the authors wrote.

The team is working to develop a tool that can help in the efficient assessment of common causes of pain in this patient population.