Palliative care for people of all ages, including children, was recognized in 2014 as an integral component of universal health coverage, with a need to increase access given the benefit of such care  and can be argued to be a human right .
There are an estimated 21 million children globally with non-communicable and communicable diseases, such as HIV, MDR- and XDR-tuberculosis that could benefit from palliative care; 98% live in LMIC’s . Eight million children are estimated to require specialized CPC . Estimated prevalence rates of the need for CPC in children aged 0 to 19 years range from 20 per 10,000 in the United Kingdom (high income country) to almost 120 per 10,000 children in Zimbabwe (low income country) .
The prevalence of life-limiting conditions appears to be rising based on improved survival  with higher rates in more deprived populations . CPC covers a wide range of illnesses with non-cancer causes constituting around 80% of cases; the majority of conditions are distinct from those seen in adult palliative care [3,4].
Characteristics of pain
- Pain features prominently across the spectrum of conditions seen in CPC with 50% or greater reporting pain in both cancer and non-cancer groups [6,7,8,9,10,11].
- Pain and other symptoms are commonly interrelated, including fatigue and anxiety in children with cancer, and feeding intolerance and altered sleep in children with neurological conditions; this requires a wider focus and skill set than just managing pain [11,12,13].
- In CPC, the pain associated with cancer diagnoses requires rapid assessment and adjustment in pain management; in contrast children with neurological conditions often involves acute on chronic management over months to years [10,11].
- Acute, procedural and treatment-related pain are common in children with severe illnesses, many of whom are supported by CPC.
- Nociceptive pain is a common etiology of cancer pain, with peripheral or central neuropathic pain conditions a less common consideration.
- Pain in children with HIV includes sensory neuropathy as a frequent complication of the disease and some treatments .
- Central neuropathic pain and visceral hyperalgesia are possible sources of chronic pain in children with severe impairment of the central nervous system .
- The etiology of pain in CPC is often multifactorial making individualized assessment important; at times, proxy reporting from the child’s carer is necessary.
- Assessment should be interdisciplinary, conducted by professionals trained in pediatrics, and with a family-centered care focus.
- Pain assessment tools are unidimensional and only play a small part in the multi-dimensional CPC evaluation.
- No one pain assessment tool is fit for purpose across all ages and stages of development .
- Reliable and well validated tools exist for all childhood groups, from the extreme premature infant and children who are unable to communicate, to the older adolescent [16,17].
- An interdisciplinary team is essential to deliver individualized, holistic pain management for the child and their family that integrates pharmacological and non-pharmacological strategies.
- Non-pharmacological strategies are available to manage pain in newborn infants .
- Good communication is essential with management strategies openly discussed and anxieties or misconceptions actively addressed.
- Assessment and management guidelines very applicable to CPC exist for:
- Acute and procedural pain in children (Australian and New Zealand College of Anaesthetists) .
- Persisting pain in children with medical illnesses including cancer (World Health Organization) .
- Children with significant impairment of the central nervous system (American Academy of Pediatrics) .
- Any therapy commenced should be frequently monitored and modified, as appropriate, to maximize pain relief.
- Pain management is not always straightforward and specialist advice should be sought when initial, basic approaches are not effective.
- Published evidence for medications in CPC are generally lacking with extrapolation often from studies in healthy adults or those suffering from cancer.
- Extrapolations should be done with caution as children and adults differ in anatomy, physiology and, more importantly, their cognitive responses to pain and analgesia; these differences are most pronounced in the neonatal period [18,21] and in children with neurological conditions .
- Opioids are a therapeutic mainstay in CPC, especially in children with a cancer diagnosis.
- Access to medications remains a barrier around the world, especially access to opioids [22,23] which has a negative impact on managing pain in CPC .
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Ross Drake MBChB, FRACP, FChPM, FFPMANZCA
Paediatric Palliative Care and Pain Medicine Specialist
Clinical Lead Paediatric Palliative Care and Complex Pain Services
Starship Children’s Health
Auckland District Health Board
Auckland, New Zealand
Julie Hauer MD, FAAP
Complex Care Service, Division of General Pediatrics
Boston Children’s Hospital
Assistant Professor, Harvard Medical School