Henry Kilham

The measurement of symptoms in young children with cancer: the validation of the Memorial Symptom Assessment Scale in children aged 7-12.

Few studies have attempted to describe the experience of symptoms in young children with cancer. This is due, in part, to the lack of validated symptom assessment scales for this patient population. The objective of this study was to evaluate the reliability and validity of a revised Memorial Symptom Assessment Scale (MSAS) in patients aged 7-12 as an instrument for the assessment of symptoms in young children with cancer. The MSAS (7-12) was administered to 149 children (inpatients and outpatients) who were undergoing treatment at either the Royal Marsden NHS Trust, London, United Kingdom or The Childrens Hospital at Westmead, Sydney, Australia. Validity was evaluated by comparison with the medical record, parental report, and concurrent assessment on visual analogue scales for selected symptoms. The data provide evidence of the reliability and validity of MSAS (7-12) and demonstrate that children with cancer as young as 7 years can report clinically relevant and consistent information about their symptom experience. Young children with cancer experience multiple symptoms. Approximately one-third had experienced lethargy and/or pain and/or insomnia during the 48 hours prior to the completion of MSAS (7-12). The completion rate for MSAS (7-12) was high and the majority of children completed the instrument in a short period of time and with little difficulty. The instrument appears to be age appropriate and may be helpful to older children unable to independently complete MSAS (10-18). Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in cancer chemotherapy drug trials.

Management of children with spinal muscular atrophy type 1 in Australia

The study aims to: (i) estimate the prevalence of spinal muscular atrophy type 1 (SMA 1); (ii) describe what practices characterise end‐of‐life care of patients with SMA 1; and (iii) ascertain whether a consistent approach to the management of these patients exists in Australia.

Should routine childhood immunizations be compulsory

Abstract:  Routine childhood immunizations are compulsory in a small number of countries, including the United States of America. Arguments used to justify making immunizations compulsory include enhancing the health of the community and treating as paramount the rights of the child to be protected against vaccine‐preventable diseases. But compulsory immunization infringes the autonomy of parents to make choices about child rearing, an autonomy which we generally respect unless doing so seriously endangers the childs health. We present a historical review and ethics discussion on whether routine childhood immunizations should be compulsory. We conclude that, for both ethical and practical reasons, routine immunization should not be compulsory if adequate levels of immunization can be achieved by other means.

Spinal muscular atrophy type I: Do the benefits of ventilation compensate for its burdens?

We report the progress of an 8‐year‐old child with spinal muscular atrophy (SMA) type 1. The parents elected in infancy that the child should be on long‐term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long‐term ventilation team reports on the childs progress and describes a week in the childs life. Two paediatricians argue that the benefits of long‐term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long‐term ventilation now. They argue that long‐term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision‐making in SMA type 1.

Restricting cough and cold medicines in children

Aims:  Based on concerns about safety and efficacy, international authorities have either advised against the use of cough and cold medication or considering such action. We aimed to systematically review the evidence for the effectiveness and safety of cough and cold medicines in children.

Ethical issues in immunisation.

Discussions about current and future immunisation programmes raise novel questions about familiar ethical issues. Two sets of ethical issues dominate these discussions. The first is the issue of compulsory immunisation: what should be done about parents who fail to immunise their children? The second is: given competing demands on health care budgets, how should principles of justice in access and distribution inform vaccination programmes? This paper considers these two issues in the light of traditional ethical principles. With respect to the first, we argue that compulsion is justified only in cases in which we know with practical certainty that parental failure to immunise puts their own child or other children at high risk of severe illness. We also argue that the state should compensate those who suffer vaccine-related injury. With respect to the second, we claim that allocating resources according to health care need requires establishing priorities between public health programmes such as immunisation and other treatment programmes.

Antipsychotic Poisoning in Young Children: A Systematic Review

The aim of this review was to determine the spectrum and severity of effects of unintentional antipsychotic poisoning in children. A computerised literature search of MEDLINE (1966 to February 2005) and EMBASE (1980 to February 2005) was undertaken. The Internet was searched using URL: http://www.google.com. The proceedings of the North American Congress of Clinical Toxicology (NACCT) and the European Association of Poisons Centres and Clinical Toxicologists (EAPCCT) were hand searched. All cases of unintentional antipsychotic (all classes) poisoning in children aged 0–6 years were included. The data extracted included the age, weight, antipsychotic, dose, clinical effects, treatment and outcomes. The toxic dose was estimated as the lowest dose causing objective adverse effects.Sixty-eight reports were identified. Few contained all of the required information. Most of the case series included multiple antipsychotics with limited information on individual drugs or all ages with limited paediatric information. For most antipsychotics the ingestion of one tablet caused symptoms that were sometimes severe and usually lasted from 1 to 3 days. Extrapyramidal symptoms (EPS) were often delayed for up to 12–24 hours. Chlorpromazine caused CNS depression, hypotension and miosis; EPS and cardiac effects were rare, and the toxic dose was estimated to be 15 mg/kg. Haloperidol caused drowsiness (rarely coma) and over one-half of patients had neuromuscular effects (mainly EPS), with a toxic dose estimated at 0.15 mg/kg. Thioridazine caused CNS depression and potentially cardiac effects, with a toxic dose of 1.4 mg/kg. Atypical antipsychotics caused significant CNS depression (except risperidone); EPS were less common. Toxic doses were clozapine 2.5 mg/kg, olanzapine 0.5 mg/kg and aripiprazole 3 mg/kg. EPS responded to anticholinergic drug treatment.In summary, unintentional antipsychotic ingestion in children can cause severe effects that last 1–3 days, often with one tablet. Children potentially ingesting a toxic dose or who are symptomatic should be considered for assessment in hospital. Most cases resolve with good supportive care. Toxic doses are only estimates that are based on limited data and should be used with caution until prospective studies are undertaken.

Treatment of a case of pediatric hypereosinophilic syndrome with anti-interleukin-5.

We report the use of anti-interleukin-5 (mepolizumab) during an 18-month period in a pediatric hypereosinophilic syndrome. Infusions every 3 months allowed better control of hypereosinophilic syndrome flares and maintained blood eosinopenia with significantly less steroid use compared with all other therapies (prednisolone alone, interferon alpha, or imatinib mesylate).

Ethical issues in preventing mother-to-child transmission of hepatitis B by immunisation

Without intervention, a pregnant woman who is a chronic hepatitis B carrier is at risk of transmitting hepatitis B and of her infant becoming a chronic carrier and having a significantly increased lifetime risk of developing liver cancer or cirrhosis. Hepatitis B vaccine and immunoglobulin reduce the risk of the baby becoming a carrier, but with only a short window period after birth to deliver this potentially life-saving intervention. We reviewed the evidence on the magnitude of the risk. If the carrier mother is e antigen positive (highly infective), the calculated risk to the infant without intervention is 75.2%, reduced to 6.0% by giving vaccine and immunoglobulin at birth. If the mother is surface antigen positive but e antigen negative, the risk to the infant without intervention is 10.3%, reduced to 1.0% by giving vaccine and immunoglobulin. If vaccine is accepted but immunoglobulin refused, as for example by some Jehovahs Witnesses, the risk to babies of e antigen positive mothers is reduced to 21.0% and to babies of e antigen negative mothers to 2.6%. These figures can be used to inform parents and as a possible basis for child protection proceedings if parents decline vaccine and/or immunoglobulin. We argue from the perspective of the best interests of the child that the severity of the condition justifies initiating child protection proceedings whenever a baby is born to a hepatitis B carrier mother and, despite concerted attempts to persuade them, the parents refuse vaccine and/or immunoglobulin.

Nutrition in cerebral palsy

The patient, now 9 years of age, was born at 24 weeks gestation. She required artificial ventilation for severe hyaline membrane disease. Her clinical course was complicated by intraventricular haemorrhage, and chronic lung disease. At discharge from the neonatal unit, she was oxygen-dependent and her parents were advised that it was likely that her development would be delayed, and that her life expectancy was ‘guarded’ and she was unlikely to live beyond 3 years. For 2 years she remained oxygen-dependent, and had frequent hospital admissions with exacerbations of her chronic lung disease due to intercurrent viral infections and probable aspiration of oral fluids. She was bottle-fed initially, feeding slowly and often choking on fluids. When solids were introduced she fed slowly and with difficulty. Over the next few years, the extent of her problems became evident. She was microcephalic with severe spastic quadriplegia, and was totally dependent for all care. She appeared to enjoy the company of her siblings. At home, her parents would spend hours feeding her. Although they found this very timeconsuming, they felt that eating was one of their daughter’s few pleasures. She had frequent courses of antibiotics for chest infections, which were thought to be secondary to aspiration. Investigations suggested the patient was not only aspirating fluids when drinking from a cup, but also had gastro-oesophageal reflux with aspiration of gastric contents. On several occasions over a number of years, a gastroenterologist had recommended fundoplication and gastrostomy, to improve nutrition and reduce the number of chest infections. The parents persistently refused. They felt the operation might be dangerous and would deprive their daughter of the pleasure of eating. They were also afraid their daughter would become too heavy to lift and carry easily. From age 5, the girl attended special school and was in residential respite care 3 days a week. When she was in the respite care, her mother would ring every few hours to make sure she was not being given extra feeds. Recently, the staff at the respite care institution persuaded the parents to agree for the patient to be referred to a special nutrition clinic, because of the respite carers’ concern about her weight, which had been virtually static for the last 3 years, and her symptoms suggestive of aspiration. When seen, she was severely emaciated, weighing 15 kg at 9 years of age, had microcephaly and severe spastic quadriplegia, and sat in her wheelchair, giggling and rocking, in response to friendly overtures. The parents are adamant that they will not give permission for an operation. The parents do not believe they are under-feeding their daughter, but say they do not want her to be overweight. Their paediatrician, when phoned, evinces little concern about the girl’s growth, insisting that respect for the parent’s wishes, both about the operation and her feeding, should be paramount. Ethical Question: To what extent should any of the healthcare professionals pursue their belief that this child’s health and nutritional needs are not being adequately met?