Palliative Care for Children and Adolescents with Tuberculosis

Childhood TB remains a topical issue because children (aged 0 to 14 years) in high-incidence settings continue to experience a huge burden of TB, despite that it is treatable and preventable, with many experiencing symptoms where they could benefit from palliative care. Palliative care is a holistic approach to care and it requires attention to physical, psychological, emotional and spiritual care.

The most common form of TB requiring palliative care in children and young people is drug-resistant TB (DR-TB) because it is associated with high morbidity and mortality. Pain, dyspnoea, nausea and vomiting are usually the main physical symptoms, but stigma and isolation can result in social and spiritual pain. The family may need support to care for the child throughout the treatment period and to make preparations for end-of-life care if the prognosis is poor.

When a child or adolescent is in need of palliative care after TB has been diagnosed some factors should be considered: The child’s specific developmental age and the needs at that stage; Any underlying health conditions experienced by the child must be taken into consideration as these have implications for the provision of essential medicines and it is important to use paediatric formulations where possible; the child’s communication needs should be considered because children are not little adults and how we discuss information when them is very different to communicating with adults; Children depend on adults and so the needs of the caregivers are very important as severe illness takes its toll on the child’s family members; and, you should check the requirements for the clinical environment and confirm if it is child friendly and comforting.

TB in children has become a serious health issue worldwide and estimates reveal that at least 1.2 million children <15 years of age fall ill with TB every year, with an estimated 67 million being infected and at risk of developing TB disease in the future. This is compounded by the fact that many of these children have been infected by multi-drug resistant TB, leading to 25 000 cases requiring expensive and toxic treatment. DR-TB refers to TB resistant to any of the first line anti-TB drugs. A report, published in The Lancet Infectious Diseases in June 2016, warns that the identified cases of drug-resistant TB in children are the tip of the iceberg and there is a large unmet need for diagnoses, drug susceptibility, and appropriate treatment.

Much focus on improving the quality of paediatric care in low-income countries has been on improving primary care using the Integrated Management of Childhood Illness (IMCI) and improving triage and emergency treatment in hospitals aimed at reducing deaths in the first 24 hours. Not enough attention has been paid to improving the quality of care for children with chronic or complex diseases. Children with complicated forms of TB, including central nervous system and chronic pulmonary TB, provide examples of acute and chronic multisystem paediatric illnesses that commonly present to district-level and second-level referral hospitals in low-income countries. The care of these children requires a holistic clinical and continuous quality improvement approach. Palliative care for children and adolescents with TB has been included in the WHO TB knowledge sharing platform operational handbook on the management of TB in children and adolescents which is an important step forward to promoting palliative care for children with TB.

According to The International Union Against Tuberculosis and Lung Disease, Children with tuberculosis (TB) rarely die when they receive standard treatment for the disease, but 90% of children sick with TB worldwide are left untreated. This widespread neglect means the loss of a million children every four years. We must end the silent epidemic of child TB.