In the last half century, improvements in paediatric care have succeeded in reducing childhood mortality and increasing survival in children with severe diseases.1 This has resulted in an increase in the number of children with chronic disease, at time with lifelong disabilities, who are more medically fragile and complex.2,3 This increase in chronic patients demands a shift in the approach to the development of paediatric treatment plans, which should aim to deliver comprehensive, multidisciplinary and coordinated care. The care of chronic patients is the main task of health care systems in the developed world.2–4

Children with special health care needs (CSHCNs) are those presenting with, or at higher risk of, a chronic physical, developmental, behavioural or emotional condition that consequently require health and related services of a type or amount beyond that required by the general paediatric population.5 Within this group there is a smaller subset, that of medically complex children (MCC), or children with complex chronic conditions (CCCs). The best definition of a child with a CCC is that of a patient with a health condition that would normally be expected to last at least 12 months (unless the patient dies) with involvement of different organ systems or involvement of a single system that is sufficiently severe to require specialised paediatric care and probably periods of hospitalisation in a tertiary care centre.6 Although in countries like the United States CSHNCs amount to only 13–18% of the total of children that use the health care system, some studies report that they generate more than 80% of the total health care costs in the paediatric population.7 This substantial proportion of the total costs is mainly due to these children requiring a greater number of hospitalizations, more frequent admission to intensive care units (ICUs), longer lengths of stay, more technological support, and more specialised services involving multiple specialty clinicians.5,8–14

There is evidence that this subset is at higher risk than the rest of the paediatric population of potentially preventable hospital admissions and/or events, and also at higher risk of being subject to medical errors.6,8,15–17 Many hospitalizations could be avoided by improving care in this group of patients.5,8 In recent years, programmes for the care of patients with chronic complex conditions have been developed, mainly in the United States, to address their needs and improve their management, providing coordinated care.8 There is evidence that the creation of specific units for the care of MCC significantly decreases overall health care costs in this group of children with high use of health care resources.10,18

At present, the Spanish health care system does not have specific care pathways for MCC, which hinders delivery of continued, coordinated and holistic care in this population. In 2008, a unit for the management of complex conditions was created in the Hospital de la Paz, the first of its kind in the country. Our purpose was to describe the operations and health care delivery in this unit, which we consider a model that is both feasible and necessary in other tertiary hospitals and regions of Spain.

We conducted a retrospective descriptive study of the infrastructures and resources employed in creating the MCC unit in the Hospital Infantil La Paz in 2008, and analysed the patients that received care from the time a patient register was created for the unit (January 2014). We reviewed all the discharge summaries of patients managed in this unit between January 2014 and July 2016, creating a specific database for the collection of data. We excluded patients that did not fit the definition of MCC. Medically complex children were defined as children meeting either of these 2 criteria: (a) presence of 2 or more complex health conditions that are either chronic or expected to have a long duration (>12 months), or (b) presence of one complex health condition that results in technology dependence and/or requires specialty care, including patients with complex psychological, behavioural or social conditions.6 Technology dependence is defined as the daily need of support from a medical device to replace or compensate for the loss of a vital function.19

We used the chronic condition categories defined by Feudtner based on the ICD-10-CM: respiratory, renal, gastrointestinal, metabolic, hematologic, congenital or genetic, malignancy, cardiovascular, neuromuscular and neonatal. We also included the conditions of transplantation and technology dependence reviewed by Feudtner.18

We conducted the statistical analysis with the IBM SPSS Statistics 23.0 software, with the help of the Section of Biostatistics of the Research Institute of the Hospital La Paz. The project was approved by the Research Ethics Committee of the hospital.

The MCC unit of the Hospital Infantil La Paz has met a growing need in modern inpatient paediatric care in tertiary specialty hospitals. This unit was created in response to the increase in the number of chronic patients that has resulted from the development and expansion of neonatal care, paediatric intensive care and specialty paediatric and surgical services offered at the Hospital La Paz. Although there are no data on the number of children with special health care needs or CCCs in Spain, the fact is that this population is growing in every health care facility, and especially in tertiary care hospitals.4 Since its opening, our unit has offered care to more than 1.000 patients residing in and out of its catchment area, transferred from other hospitals in the Autonomous Community of Madrid and from other autonomous communities that do not have the necessary infrastructure or human resources to care for these patients. In the years that have passed, its level of activity has been increasing, and at present exceeds its capacity, with a level of occupancy of more than 100%, which reflects the current health care needs of these patients. This is a young unit that is still growing and will undoubtedly expand in subsequent years, as observed in other countries.8,12

A high percentage of patients had multimorbidity (92.59%), exceeding the proportions reported by similar units in other countries (41% in the study of Berry et al.8). This may be due to differences in admission criteria between units, as the considerable growth of paediatric subspecialties may have led to the development of specific medical services devoted to the comprehensive management and followup of patients with certain severe chronic diseases, so that the coordinating role of a unit for CCC would be more relevant in patients with diseases involving different organ systems and requiring management by different clinical specialties. The coordination of care is an essential role of paediatric hospitalists, and has demonstrated significant benefits in the optimisation of resources.6,19 It involves treatment planning and diagnostic testing, coordination of the care delivered by subspecialists, the establishment of common goals to be pursued during the hospital stay, the development and revision of care plans, and the establishment of discharge criteria. In recent years, documents have been developed to facilitate patient care and reduce medical errors during hospitalisation (such as clinical care plans and specific progress notes such as “hand-off” documents).20

The most frequent chronic condition category in the patients managed in the unit was the neurologic category, within which the most frequent conditions were infantile cerebral palsy or severe early-onset epileptic encephalopathies. Due to the high frequency of comorbidities in these patients (95.18% with multimorbidity), whether gastrointestinal (swallowing disorder, gastroesophageal reflux, changes in bowel movements …), orthopaedic (hip dislocation, scoliosis, …), respiratory (restrictive lung disease, bronchial aspiration, obstructive apnoeas, …) or involving other systems, they require a comprehensive approach to management, always respecting the contribution of each specialist.21 Gastrointestinal and respiratory conditions are usually associated with a different primary chronic condition. Patients with cardiovascular conditions, who were fourth in frequency in our study (41.56%), constitute an important subset, as most of them have severe congenital heart diseases with involvement of other organs or systems and/or technology dependence (94.05% and 58.41% of our patients, respectively).22,23

The mean length of stay in our unit has decreased significantly after a few years of activity and skill building, and currently equals the lengths reported by similar units.12 Improvements in staff training, increased human and material resources, the work of the link nurse, coordination with primary care facilities and other hospitals, the use of new technologies and above all the continuation of care in hospital-based outpatient clinics are some of the factors that contributed to this decrease. It has been estimated that the creation of MCC units reduces the mean annual inpatient care costs by $1766 per patient per month,15 although we do not have data from our unit to corroborate this figure.

An important aspect that we did not analyse and that could be the subject of future research was the most frequent reasons for admission in MCC. These patients are more likely to experience intercurrent events, such as infections, respiratory exacerbations, nutritional problems and complications related to supportive technology requiring hospitalisation.8,22–24 Another aspect that is just as worthy of investigation is determining the main reasons for hospital readmission. Although readmission only amounted to 8.93% of admissions in our patients, consistent with other studies,15,25 they are considered a marker of inadequate quality of care, as their prevention improves patient quality of life and reduces health care costs.8 However, in MCC the need for readmission cannot always be prevented due to exacerbations of the underlying disease, often due to infections common in childhood. In particularly complex patients, the opportunity to spend time at home improves quality of life, even if it entails relatively frequent readmissions, and therefore readmissions should not be always be interpreted in a negative light.

In many hospitals, these patients are admitted directly to the ICU, as they often require monitoring and treatment measures beyond the usual capabilities and resources of inpatient wards. These patients increase the demand for ICU beds, overcrowding these units while their resources are underutilised, or else they are admitted to inpatient wards that are ill-prepared to face the challenges that they pose. The creation of units with qualified personnel makes it possible for these patients, when their condition allows, to stay in the inpatient ward, with the consequent reduction in health care costs and increased availability of ICU beds for other critical patients. In addition, hospitalisation always has a negative impact, as it increases stress in patients and their families, so it is important to make it possible for parents to be with the patient around the clock.26,27 It may be difficult for highly specialised intensive care and monitoring units to address other aspects of the comprehensive management required by children with CCCs. In addition to the necessary coordination of care, such aspects may involve skill training of family members, the maintenance of sleep-wake cycles or management of the stress that may result from sharing the space with other children in critical condition.

Medical errors are frequent enough to be the third leading cause of death in some countries.28 The greater number of treatments, frequent changes in management and the potential lack of updated summary reports make MCC a population particularly at risk of being subject to more frequent medical errors.9,16–19,29 They are also at higher risk of experiencing adverse events resulting from drug interactions and the off-label use of medications.15 There is evidence that the creation of units to coordinate the care of these children and the use of specific documentation (e.g. hand-off templates) are associated with a reduction in medical errors.17,20

The proportion of technology-dependent patients was higher than the one described by Simon et al.,12 with 46.50% of our patients requiring oxygen therapy, 35.80% a gastrostomy, 18.93% mechanical ventilation, 11.11% a CSF shunt and 10.69% a tracheostomy. The need for mechanical ventilation was associated with higher mortality, longer lengths of stay, increased health care costs and increased need of home-based care.30 Among the deceased patients, 9 (40.09%) had needed mechanical ventilation.

Supporting families through the entire course of disease is of the essence, including, in some cases, the death and mourning of the child (9.05% of the patients). Some patients have irreversible diseases that require the establishment of care plans, with consideration of eventual withdrawal or withholding of treatment. In 73.68% (14/19) of the patients with irreversible diseases that died, such a plan had been established in agreement with the parents; 10 of these patients died in a room in the inpatient ward, a setting that is usually quieter and affords greater privacy and the required dignity; 4 children had been followed up by the palliative care unit of the Hospital Niño Jesús de Madrid, so they received care in coordination with that unit. Another 15 children are currently being followed up by the palliative care unit at Hospital Niño Jesús.

There are telemedicine projects that offer new options for the assessment and treatment of patients with chronic disease, benefitting patients, parents, relatives and caregivers.31,32 One of the objectives of our unit is the implementation of an online home-based support platform, which is in the latest stages of development and we expect to launch in the months to follow, improving the care of our patients.

On account of all of the above, we consider that these patients need to be managed by paediatricians specifically dedicated to chronic complex patients and in specialised units located in tertiary or high level-of-care hospitals. We believe that units for the management of patients with complex chronic conditions need to be developed and run in other tertiary care facilities throughout Spain.

The authors have no conflicts of interest to declare.