Treating pain acutely may be the best way of preventing chronic pain. Studies of male infants undergoing circumcision displayed an altered, intensified reaction to vaccination at 4 to 6 months compared to male infants who did not undergo circumcision (10). Long-term effects on the memory with subsequent painful experiences in neonates are unknown; however, memory is thought to play an important role in later pain events. Early exposure to painful stimuli may have long-lasting effects on perception and response to pain (11,12).


Commonly, pain is accepted as the "fifth vital sign"; scoring systems for pain have become the expectation of patients and families and now are used as a benchmark by hospital accrediting bodies to improve the quality of care that patients receive on a daily basis (2). Despite their utility, pain intensity scores are inherently an oversimplification as they disregard elements such as the location, quality, and the emotional experience of pain (13). Currently, many pain assessment tools are available for evaluation of neonates, infants, children, and adults. Unfortunately, the majority of these scales require self-report as the primary means of assessment. Common self-report scales that are used include: the numerical rating scales (NRS), Visual Analog Scales (VAS), and Wong-Baker FACES Scale (Figure 20A.1). Observational scales for the developing child include: Faces, Legs, Activity, Cry, and Consolability Scale (FLACC) (14) and the Child Facial Coding System. Other assessment tools that may be used for children include: Echelle Douleur Enfant San Salvador (DESS), the Pediatric Pain Profile, the Non-Communicating Children's Pain Checklist (NCCPC), and the Pain Indicator for Communicatively Impaired Children (15-17). Providers should be aware of the many available pain scoring resources and should make their assessment with the most appropriate scoring systems given the patienf s age, intellectual ability, and experience.

As previously mentioned, pain is complex and incorporates both sensory and emotional experience. Therefore, further research and validation of these tools are necessary, as they do not fully encompass the pain experience.


Evaluating the level of pain a developmentally delayed child is experiencing can be challenging in both the acute and chronic setting. Unfortunately, the term developmentally delayed tends to group many different intellectual and developmental disabilities into one category despite the possibility that characteristics of each condition may differ. Commonly, developmentally delayed children have multiple comorbidities that increase their exposure to health care providers and the likelihood of undergoing painful procedures. Many patients will not be able to verbally express their perception and experience thus leading the health care provider to make inferences of the level of pain and proper treatment modalities. Also, many impaired patients may express pain differently than those without limitations. In fact, some may lack expression completely or have a unique way expressing discomfort (18,19).

Wong-Baker FACES scale example.

FIGURE 20A.1 Wong-Baker FACES scale example.

Source: Adapted from Perret D, Chang E, Hata J, et al. The Pain Center Manual. New York, NY: Demos Medical Publishing LLC; 2014: 163.

Early recognition and treatment of painful conditions is key to prevention of chronic pain states. Utilization of specialized assessment tools may prove to be helpful but cannot be used in isolation. A thorough assessment can be difficult to obtain in this population, given the frequent challenges in effectively communicating somatic complaints. Self-report pain scales for develop-mentally delayed children in most circumstances cannot be recommended as a first-line assessment tool, rather observational scales may be more appropriate (20). Studies have also shown that caregiver reports and beliefs are often incomplete or inaccurate, thus necessitating the use of multiple tools for the most accurate assessment (21,22).

A multidisciplinary approach that includes the patienf s primary care provider and other specialists who are working closely with the patient can prove to be beneficial to accomplish a common goal. It is important to involve the patient's caregivers to gain insight into what they believe the patient may or may not be going through, but even then, requires significant inference. The overall goal of treatment should be directed toward quality of life improvement.

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