BACKGROUND AND OBJECTIVE: Health care use of children with medical complexity (CMC), such as those with neurologic impairment or other complex chronic conditions (CCCs) and those with technology assistance (TA), is not well understood. The objective of the study was to evaluate health care utilization and costs in a population-based sample of CMC in Ontario, Canada. METHODS: Hospital discharge data from 2005 through 2007 identified CMC. Complete health system use and costs were analyzed over the subsequent 2-year period. RESULTS: The study identified 15 771 hospitalized CMC (0.67% of children in Ontario); 10 340 (65.6%) had single-organ CCC, 1063 (6.7%) multiorgan CCC, 4368 (27.6%) neurologic impairment, and 1863 (11.8%) had TA. CMC saw a median of 13 outpatient physicians and 6 distinct subspecialists. Thirty-six percent received home care services. Thirty-day readmission varied from 12.6% (single CCC without TA) to 23.7% (multiple CCC with TA). CMC accounted for almost one-third of child health spending. Rehospitalization accounted for the largest proportion of subsequent costs (27.2%), followed by home care (11.3%) and physician services (6.0%). Home care costs were a much larger proportion of costs in children with TA. Children with multiple CCC with TA had costs 3.5 times higher than children with a single CCC without TA. CONCLUSIONS: Although a small proportion of the population, CMC account for a substantial proportion of health care costs. CMC make multiple transitions across providers and care settings and CMC with TA have higher costs and home care use. Initiatives to improve their health outcomes and decrease costs need to focus on the entire continuum of care.

/pdf/patterns-and-costs-of-health-care-use-of-children-with-165ga7rek0.pdf

Patterns and Costs of Health Care Use of Children With Medical Complexity

Children with severe neurological impairment have a high incidence of respiratory problems which are multifactorial and may be related to or dependent on the underlying disability. In addition, common respiratory conditions such as asthma will be represented in this group as in the general paediatric population. In order to maximise quality of life and reduce morbidity and mortality, each child should be carefully assessed and treated, making adjustments where necessary in the treatment regime to take account of the disability.

https://adc.bmj.com/content/archdischild/88/1/75.full.pdf

Respiratory problems in children with neurological impairment

Objective To compare inpatient resource use trends for healthy children and children with chronic health conditions of varying degrees of medical complexity. Design Retrospective cohort analysis. Setting Twenty-eight US children's hospitals. Patients A total of 1 526 051 unique patients hospitalized from January 1, 2004, through December 31, 2009, who were assigned to 1 of 5 chronic condition groups using 3M's Clinical Risk Group software. Intervention None. Main Outcome Measures Trends in the number of patients, hospitalizations, hospital days, and charges analyzed with linear regression. Results Between 2004 and 2009, hospitals experienced a greater increase in the number of children hospitalized with vs without a chronic condition (19.2% vs 13.7% cumulative increase, P  Conclusions Patients with a chronic condition increasingly used more resources in a group of children's hospitals than patients without a chronic condition. The greatest growth was observed in hospitalized children with chronic conditions affecting 2 or more body systems. Children's hospitals must ensure that their inpatient care systems and payment structures are equipped to meet the protean needs of this important population of children.

https://jamanetwork.com/journals/jamapediatrics/articlepdf/1486706/poa120064_170_177.pdf

Inpatient Growth and Resource Use in 28 Children's Hospitals: A Longitudinal, Multi-institutional Study

> “… as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don’t know we don’t know.” D Rumsfeld, 2002

### 1.1 Aims and target audience

The aims of these guidelines are to present the evidence base for the practice of administering supplemental oxygen to children outside hospital and to make recommendations for best practice. For many aspects high-quality evidence is lacking, and suggestions are made based on clinical experience. It is hoped the guideline will highlight areas where research is needed to further inform clinicians. The target audience is clinicians who prescribe home oxygen for children, principally those in hospital practice. It is also intended for other professionals involved with the whole process, which may include community paediatricians, paediatric neurodisability specialists, nurse specialists, school nurses, occupational therapists and physiotherapists; this is reflected by the multidisciplinary nature of the guideline committee (section 13).

### 1.2 Methodology for generation of the guidelines

The initial literature search was carried out by the Centre for Reviews and Dissemination at the University of York. Further searches were then carried out by members of the working group who concentrated on their own topics. Details of the search strategy are given in Appendix 1 available online.

Each section of the guideline was researched and drafted by a subgroup of the Paediatric Section of the British Thoracic Society (BTS) Home Oxygen Guideline Development Group (itself a subcommittee of the BTS Standards of Care Committee). Publications were rated according to the SIGN 50 criteria for the calibre of the methodology of the research to give levels of evidence (see box 1). Once all parts were merged into one document, the whole group then met to discuss the first …

https://thorax.bmj.com/content/thoraxjnl/64/Suppl_2/ii1.full.pdf

BTS guidelines for home oxygen in children

Children with neurodevelopmental disabilities such as cerebral palsy (CP), spina bifida, or inborn errors of metabolism frequently have associated gastrointestinal problems. These include oral motor dysfunction leading to feeding difficulties, risk of aspiration, prolonged feeding times, and malnutrition with its attendant physical compromise. Gastrostomy tube feeding is increasingly being used in these children to circumvent oral motor dysfunction and prevent malnutrition. Foregut dysmotility causes several problems such as dysphagia from oesophageal dysmotility, gastro-oesophageal reflux disease, and delayed gastric emptying. Gastro-oesophageal reflux disease is common in these children but often fails to respond to medical management and may require surgical treatment. Finally, constipation is often a problem that may be overlooked in this population. This article focuses on these associated gastrointestinal manifestations and discusses the current diagnostic and therapeutic options available.

Gastrointestinal disorders in children with neurodevelopmental disabilities.

Background This study was done to determine survival rates in subpopulations of severely neurologically disabled children who reside in pediatric skilled nursing facilities and to compare these survival rates with those in previously published studies Methods Data were collected at three pediatric skilled nursing facilities over the 1986 to 1996 decade The total study population numbered 447 We studied in detail six groups of the most severely disabled children and correlated their survival rates with clinical parameters and the presence of other significant diseases Results The survival rates in our six groups of severely disabled children were significantly better than those previously reported In group 1, our 8-year survival rate was 66%, as compared with 5% in the previous study In group 2, our 8-year survival rate was 89%, versus 22% in the previous study We obtained better survival rates in all six groups studied, irrespective of the analysis including children less than 1 year old, between 1 year and 15 years old, or more than 15 years old The most significant determinant for reduced survival was the presence of other significant diseases Those with other significant diseases had a 10-year survival rate of 45%, whereas those who were relatively healthy had a survival rate of 90% Patients who received gastrostomy tube feedings had a better 10-year survival rate than those fed by nasogastric tube (78% vs 41%) This difference was independent of the presence of other significant medical diseases Conclusions Our results show substantially better survival rates than those previously reported These improved results are most likely related to much more intense medical management of severely disabled children in skilled nursing facilities than at home or in other residential settings Our study also showed a significantly better survival rate for those fed by gastrostomy tube as compared with nasogastric tube

Survival rates among children with severe neurologic disabilities.

Pulmonary Vest Therapy in Pediatric Long-Term Care

Background and methods In patients with severe cerebral palsy, pneumonias are a frequent occurrence and can lead to excessive morbidity and mortality. Similar poor outcomes can occur in patients with cystic fibrosis. Nebulized tobramycin has been shown to be effective in preventing pneumonias, and in improving lung function in cystic fibrosis patients. This study reports results from three patients with severe cerebral palsy who were suffering from recurrent pneumonias. We compared the 12 months prior to starting nebulized tobramycin, to the first 12 months of intermittent therapy (28 days of nebulized antibiotic, followed by 28 days with no antibiotic, then repeated). We noted the number of pneumonias, the number of hospitalizations due to pneumonia, and length of hospitalizations for pneumonia. Results Adding the results from the three patients together, the number of pneumonias went from 19 during the year prior to starting the nebulized tobramycin, to 11 during the year of treatment. The number of hospitalizations for pneumonia went from 11 to 0. The number of days in hospital for pneumonia went from 110 to 0. Conclusion As in cystic fibrosis patients, patients with severe cerebral palsy may benefit from the intermittent use of nebulized tobramycin to prevent pneumonias and hospitalizations due to pneumonia. Further studies are warranted.

Nebulized tobramycin: prevention of pneumonias in patients with severe cerebral palsy.

We present five cases of children with severe neurologic handicaps whose management was complicated by excessive lethargy. Treatment with L-carnitine in a dosage range of 35-50 mg/kg/day resulted in a marked improvement in alertness and arousability. In four cases, when L-carnitine was discontinued for a month, they all promptly became lethargic. When L-carnitine was re-started, the lethargy resolved and the improvement has been maintained for up to 14 months. In three children who were tested, serum carnitine levels (total and free) were normal before starting L-carnitine treatment.

Irene Kasnicka

Papers

Survival rates among children with severe neurologic disabilities.

Pulmonary Vest Therapy in Pediatric Long-Term Care

Nebulized tobramycin: prevention of pneumonias in patients with severe cerebral palsy.

l-Carnitine as a treatment of lethargy in children with chronic neurologic handicaps

Poster 1: Pulmonary vest therapy to prevent pneumonias in quadriplegic cerebral palsy1