Pain in Children with Special Health Care Needs
Many kinds of pain affect children and youth with special health care needs (CYSHCN), some of whom have intellectual disability that makes assessing and understanding their pain more challenging and others who have ongoing acute pain as part of their condition.
ICD-10 Coding
Helpful Articles
Harris J, Ramelet AS, van Dijk M, Pokorna P, Wielenga J, Tume L, Tibboel D, Ista E.
Clinical recommendations for pain, sedation, withdrawal and delirium assessment in critically ill infants and children: an
ESPNIC position statement for healthcare professionals.
Intensive Care Med.
2016;42(6):972-86.
PubMed abstract / Full Text
Miró J, McGrath PJ, Finley GA, Walco GA.
Pediatric chronic pain programs: current and ideal practice.
Pain Rep.
2017;2(5):e613.
PubMed abstract / Full Text
Hauer J, Houtrow AJ.
Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System.
Pediatrics.
2017;139(6).
PubMed abstract
Hauer JM.
Pain in Children With Severe Neurologic Impairment: Undoing Assumptions.
JAMA Pediatr.
2018;172(10):899-900.
PubMed abstract
Pearls & Alerts
Parent intuition
Parents with CSHCN are sometimes frustrated when primary care,
emergency room, and other clinicians do not respond to concerns about their child
being in pain or “not acting like himself.” In general, parents should be considered
the best source of information about what a non-verbal child is feeling. Parental
feelings about pain or something being wrong should be taken seriously.
Neuro-irritability
In non-verbal children, there is a phenomenon called neuro-crying,
neuro-irritability, and/or neuro-irritation that can be difficult to distinguish
from pain. This crying might be the result of an immature or abnormal nervous
system, but this is a diagnosis of exclusion; other sources of pain should be ruled
out. Even without finding a source of pain, the medical home should work with the
family on ways to alleviate the crying, e.g., upright vs. supine posture, changes in
diet, and calming measures. The parents should be encouraged to take some time away,
even for an hour or 2. Notably, this type of irritability may respond to gabapentin.
[Collins: 2019]
Diagnosis
Interpreting the manifestations of pain should account for the developmental age of the child and their verbal ability/interest. In non-verbal children, it is often difficult to distinguish pain from agitation, such as a child with dystonic cerebral palsy whose agitation episodes may be due to an environmental stimulus that is not pain-related. Presentations of pain in children with special health care needs can vary widely and are often non-specific. Quinn et al. identified irritability, feeding intolerance, change in mental status, vomiting, breath-holding, and increased muscle tone or spasticity as presentations of pain in children with medical complexity. [Quinn: 2018]
Common sources that should be considered when evaluating a child with pain/irritability of unknown cause include ear infections, dental caries, fractures, constipation, skin lesions, urinary tract infection, and abdominal pain.
Co-occurring Conditions
Anxiety
Inadequate sleep
Management by Type of Pain
Acute Pain
- For children with a mental age of ≥6 years, visual analog scales (VAS), generally using icons of faces reflecting various levels of discomfort/distress, are recommended. [Bailey: 2012]
- For those with a mental age of ≤5 years, behavioral
pain assessments are recommended, including the:
- R-FLACC scale, validated for those 2 months to 7 years of age (see
Using Pediatric Pain Scales Faces Legs Activity Cry Consolability Revised Scale (FLACC-R) (
328 KB)) [Malviya: 2006]
-
Non-communicating Children’s Pain Checklist – Revised (NCCPC) (
32 KB)
- R-FLACC scale, validated for those 2 months to 7 years of age (see
Using Pediatric Pain Scales Faces Legs Activity Cry Consolability Revised Scale (FLACC-R) (
Ongoing Acute Pain
- See the Portal's list of Hospice & Palliative Care (see NW providers [3]).
Neuropathic Pain
- See the Portal's list of Pain Management (see NW providers [1]).
Chronic Pain
Medications
There is limited evidence to guide the use of medications for pain relief in children. Generally, children should be started on a low dose of a medication familiar to the clinician, which should then be increased as needed slowly while carefully watching for side effects. Absent over-riding concerns, start with an over-the-counter medication, such as ibuprofen, acetaminophen, or naproxen. Topical agents may be tried alone but are usually used as an add-on for pain and a counter-stimulant/distraction (See Behavioral Health considerations below). Opioids should be used only when necessary and with a definitive plan for their use and, ideally, in consultation with a pain service.
If acute pain medications aren’t helpful, consider adding a medication that can change the pain sensation over time, including the gabapentin-like medications gabapentin and pregabalin, the tricyclic antidepressants amitriptyline and imipramine, and the serotonin norepinephrine reuptake inhibitors (SNRIs) duloxetine and venlafaxine. Carbamazepine, oxcarbazepine, and phenytoin are used for trigeminal neuralgia.
Treatment of peripheral and central neuropathic is addressed by [Szok: 2019].
Cognitive Behavioral Therapy
Families are often uncertain about the role of behavioral health in pain management. Cognitive Behavioral Therapy (CBT) is a widely researched, time-limited therapeutic approach shown to be effective for managing pain and other related conditions. CBT management of chronic pain, either alone or as a part of an integrated pain management program, is successful for improving function over time. Evidence suggests that improved functioning also improves quality of life for a variety of chronic pain conditions.
CBT is a talk therapy where the therapist works with a patient to analyze and redirect thoughts, feelings, and behaviors related to headache and response to headache in a way that improves management by learning new ways of using thoughts and behaviors to control how the brain responds to pain signals. Key components of CBT for pain are:
- Self-management training, including pacing and learning to accomplish things in a thoughtful and systematic way
- Relaxation training, which could include biofeedback, relaxation techniques, hypnosis, mindfulness, and others
- Behavioral Activation that seeks to increase a child’s or adolescent’s ability to engage in activity
- Maintaining exercise, sleep, nutrition, and hydration needs
Insurance benefits vary, and these therapies fall under mental health coverage, even though they are addressing a medical problem. Contact the insurance company for specific coverage information.
- See the Portal's list of Behavioral Therapies (see NW providers [1]).
Holistic Approaches
An increasing body of evidence suggests that a holistic approach to pain management is likely to be more effective than a pharmacologic approach alone. Pain is a biopsychosocial construct and typically requires a comprehensive and interdisciplinary approach.
Nonpharmacologic options are often helpful as part of a comprehensive multidisciplinary plan, including psychological therapies, acupuncture, meditation, aromatherapy, music therapy, pet therapy, play therapy, and others. Physical therapies such as massage, ultrasound, stretching, and transcutaneous electrical stimulation (TENs) may be helpful and are generally prescribed by a physiatrist.
Learning behavioral management and tolerance skills, including counter-stimulation, distraction, cognitive control, and relaxation, can provide considerable relief for many children with chronic pain.
- For details on techniques, see Behavioral Management of Pain.
Other holistic approaches may include:
Children’s Pain Programs
If treatment is not effective using the above approaches, local resources, such as a palliative care service, pediatric pain clinic, or anesthesia service at a local children’s hospital, should be considered.
Interdisciplinary pain programs are designed to include pediatric patients as part of an active treatment team, focused on the person rather than the pain. These programs provide patients and families with a holistic approach to pain treatment and involve a comprehensive team to help children in pain live a full life. Because chronic pain is a complex problem, it is important that a pain team provides children with the physical and psychological components needed for success.
- See the Portal's list of Pain Management (see NW providers [1]).
Spiritual Community and Support
Sometimes the role of faith in a person’s pain will need to be addressed. A simple spiritual assessment may be helpful with the acronym “FICA:”
- Faith - does the person have a faith or spiritual belief system?
- Importance - how important is that belief in their life and in their understanding of the illness/condition? Sometimes people feel they are being punished by God, or that God has abandoned them, or are confused as to why a benevolent God would allow this to happen to them.
- Community - is their faith community available to them for daily support, spiritual support, etc.?
- Address in your care - how should issues of faith be addressed in their care? Don't mention it, bring in the chaplain, pray for/with them, etc.
See the FICA Spiritual History Tool for more information.
Prevention
Children who will be exposed to large numbers of procedures or will have ongoing pain issues (e.g., rheumatoid arthritis) should be followed by therapists, including Child Life, while in the hospital and Behavioral Health, to manage and minimize long-lasting effects of acute pain leading to pain chronification. A multidisciplinary approach is usually needed.
Resources
Information & Support
Behavioral Management of Pain
Behavioral management and tolerance skills, including
counter-stimulation, distraction, cognitive control, and relaxation, which can
provide considerable relief for many children with chronic
pain.
For Professionals
Caring for Children Who Have Severe Neurological Impairment: A Life with Grace
Written by an expert physician, this book empowers parents to make informed decisions about their child’s care.
Pediatric Pain and Symptom Management Guidelines ( 98 KB)
An excellent resource for caring for children with pain from Julie Hauer and her group at the Dana Farber Cancer Institute
at Boston Children’s Hospital.
Services for Patients & Families Nationwide (NW)
Service Categories | # of providers* in: | NW | Partner states (4) (show) | | NM | NV | RI | UT | |
---|---|---|---|---|---|---|---|---|---|
Animal-Assisted Therapy | 7 | 19 | 11 | 8 | 21 | ||||
Arts/Music Therapies | 2 | 2 | 7 | 6 | 10 | ||||
Behavioral Therapies | 1 | 17 | 18 | 31 | 36 | ||||
Hospice & Palliative Care | 3 | 5 | 24 | 4 | 43 | ||||
Pain Management | 1 | 2 | 3 | 1 | 2 | ||||
Pediatric Integrative Medicine | 1 | ||||||||
Play Therapy | 1 | 2 | 4 | 3 | 22 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Authors & Reviewers
Authors: | Lynne M. Kerr, MD, PhD |
Deirdre Caplin, Ph.D., MS | |
Reviewers: | Dominic Moore, MD, FAAP |
Joan Sheetz, MD |
Page Bibliography
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Reliability of the visual analog scale in children with acute pain in the emergency department.
Pain.
2012;153(4):839-42.
PubMed abstract
Beltramini A, Milojevic K, Pateron D.
Pain Assessment in Newborns, Infants, and Children.
Pediatr Ann.
2017;46(10):e387-e395.
PubMed abstract
Cirillo A, Collins J, Sawatzky B, Hamdy R, Dahan-Oliel N.
Pain among children and adults living with arthrogryposis multiplex congenita: A scoping review.
Am J Med Genet C Semin Med Genet.
2019;181(3):436-453.
PubMed abstract
Collins A, Mannion R, Broderick A, Hussey S, Devins M, Bourke B.
Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: a single-centre retrospective
review.
BMJ Paediatr Open.
2019;3(1):e000467.
PubMed abstract / Full Text
Fisher E, Law E, Dudeney J, Palermo TM, Stewart G, Eccleston C.
Psychological therapies for the management of chronic and recurrent pain in children and adolescents.
Cochrane Database Syst Rev.
2018;9:CD003968.
PubMed abstract / Full Text
Harris J, Ramelet AS, van Dijk M, Pokorna P, Wielenga J, Tume L, Tibboel D, Ista E.
Clinical recommendations for pain, sedation, withdrawal and delirium assessment in critically ill infants and children: an
ESPNIC position statement for healthcare professionals.
Intensive Care Med.
2016;42(6):972-86.
PubMed abstract / Full Text
Hauer J, Houtrow AJ.
Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System.
Pediatrics.
2017;139(6).
PubMed abstract
Hauer JM.
Pain in Children With Severe Neurologic Impairment: Undoing Assumptions.
JAMA Pediatr.
2018;172(10):899-900.
PubMed abstract
Landry BW, Fischer PR, Driscoll SW, Koch KM, Harbeck-Weber C, Mack KJ, Wilder RT, Bauer BA, Brandenburg JE.
Managing Chronic Pain in Children and Adolescents: A Clinical Review.
PM R.
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PubMed abstract
Lomax MR, Shrader MW.
Orthopedic Conditions in Adults with Cerebral Palsy.
Phys Med Rehabil Clin N Am.
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PubMed abstract
Malviya S, Voepel-Lewis T, Burke C, Merkel S, Tait AR.
The revised FLACC observational pain tool: improved reliability and validity for pain assessment in children with cognitive
impairment.
Paediatr Anaesth.
2006;16(3):258-65.
PubMed abstract
Miró J, McGrath PJ, Finley GA, Walco GA.
Pediatric chronic pain programs: current and ideal practice.
Pain Rep.
2017;2(5):e613.
PubMed abstract / Full Text
O'Connell N.
Clinical management in an evidence vacuum: pharmacological management of children with persistent pain.
Cochrane Database Syst Rev.
2019;6:ED000135.
PubMed abstract
Ostojic K, Paget S, Kyriagis M, Morrow A.
Acute and Chronic Pain in Children and Adolescents With Cerebral Palsy: Prevalence, Interference, and Management.
Arch Phys Med Rehabil.
2019.
PubMed abstract
Quinn BL, Solodiuk JC, Morrill D, Mauskar S.
CE: Original Research: Pain in Nonverbal Children with Medical Complexity: A Two-Year Retrospective Study.
Am J Nurs.
2018;118(8):28-37.
PubMed abstract
Szok D, Tajti J, Nyári A, Vécsei L.
Therapeutic Approaches for Peripheral and Central Neuropathic Pain.
Behav Neurol.
2019;2019:8685954.
PubMed abstract / Full Text
Wilmshurst JM, Ouvrier RA, Ryan MM.
Peripheral nerve disease secondary to systemic conditions in children.
Ther Adv Neurol Disord.
2019;12:1756286419866367.
PubMed abstract / Full Text