Medical and technological advances in recent decades have significantly reduced child mortality, resulting in an increased survival of children with chronic conditions, disabilities, technology dependence, and complex medical conditions.1

This epidemiological shift has given rise to a new profile of pediatric patients: children with complex chronic conditions (CCCs). Children with CCCs are a subset of pediatric patients with severe multisystemic diseases, a high treatment burden, recurrent hospitalizations, and a need for continuous, multidisciplinary, and coordinated care, including home care.2 It is estimated that they amount to less than 3% of the pediatric population in the US and Canada, yet they account for up to 40% of pediatric health care expenditures.3–5 Prevalence estimates vary depending on the definition of CCC and methodology used. In England, Fraser et al. estimated a prevalence of life-limiting conditions of 66.4 per 10 000 individuals aged 0–19 years of age in 2017, with a predicted increase to 84.2 per 10 000 by 2030.6

The terminology used to describe children with complex medical conditions is heterogeneous and depends both on the stage of the disease (children with CCCs, with palliative care needs, with life-limiting or life-threatening conditions) and on the level of care complexity (children with special health needs, with medical complexity, or who are technology-dependent). This variability precludes consistent stratification of patients, limits the comparability of studies, and has an impact on clinical practice. Several identification and stratification tools based on diagnoses and clinical and administrative variables exist, the most widely used of which are the Pediatric Complex Chronic Conditions Classification7 and the and the Pediatric Medical Complexity Algorithm (PMCA),8 both based on the International Classification of Diseases, 10th Revision (ICD-10). However, newer tools that address clinical, educational, care, and psychosocial needs are also being developed, including the expanded PedCom Scale,9 which has demonstrated greater validity in the settings where it has been evaluated10 (Table 1). Implementing stratification strategies is key to planning interventions and allocating resources, taking into account functional, educational, home care, and family needs, in addition to the diagnosis.

Some children with CCCs are eligible for pediatric palliative care, which must be tailored according to the stage of development and the degree of clinical complexity, ranging from a general palliative care approach to intervention by specialized care teams.11

Families of children with CCCs face a substantial and prolonged caregiver burden, with a significant physical, emotional, and socioeconomic impact.12–15 These families require a holistic care approach that safeguards the child’s dignity and fosters relationships built on trust, respect, and shared decision-making with the care team.12,13,16 Caregiving falls primarily on parents, who spend a mean of 3.9 h per week on care coordination and more than 5.1 h providing direct care, which that can increase to 14.4 h in children with greater impairment, such as those with severe cerebral palsy. This caregiver strain extends to personal, social, and professional life: approximately 14.5% of families reduce or forgo employment due to their child’s condition, particularly in low-income households or those with young children.17

This significant social impact calls for governments and health care systems to implement policies and allocate resources to help families care for their children. In the Community of Madrid, children requiring palliative care have been recognized as a population warranting special protection under Law 4/2023, of March 22, on Rights, Guarantees and Comprehensive Protection of Children and Adolescents of the Community of Madrid.18 At the national level, Spain also provides disability and long-term care benefits, as well as the Allowance for the Care of Minors with Cancer or Other Serious Illness (CUME, by its Spanish acronym), which allows one parent to reduce working hours by at least 50%, compensating for the resulting income loss.19,20

In 2022, in light of this situation, the Department of Family, Youth, and Social Affairs of the Community of Madrid, via the Sub-Directorate General for Child Welfare, established a one-time financial assistance program for families caring for a patient aged up to 25 years receiving specialized pediatric palliative care. Although the program was well received, few families applied owing to its eligibility requirements. Thus, in 2023, the criteria were expanded to also include families caring for a patient aged less than 25 years with a CCC, cancer, or other serious illness involving substantial use of health care resources.21

The primary objective of the study was to determine the level of complexity among pediatric patients with CCCs who applied for financial assistance through social services, using validated scales that were administered sequentially. The secondary objectives were: (1) to assess the variability in complexity across primary diagnoses in the study sample, and (2) to describe the care and psychosocial needs of patients classified as having CCCs by the PedCom Scale.

We analyzed 360 files, of which 5 were excluded due to missing data, resulting in a final sample of 355 patients. The median age was 8.1 years (IQR, 12.2−4.6), and 41.4% of the patients were female.

Table 3 shows the distribution of patients according to their primary diagnosis.

When we applied the stratification tools, 66.2% of the patients (n = 235) were classified as having a CCC according to the PMCA. Of these patients, 49.3% were also classified as having a CCC by the PedCom scale with scores greater than 6.5. Fig. 1 summarizes this stratification process.

Figure 1.

Stratification of the study sample.

We specifically analyzed the PedCom scores for the five most common diagnoses (epilepsy, acute lymphoblastic leukemia, cerebral palsy, and congenital disorders) and found variable value ranges (Table 4).

We also analyzed the clinical and psychosocial characteristics of the sample according to the PedCom (Table 5).

This is the first study conducted in Spain that estimates medical complexity in children with chronic conditions in Spain based on data collected by social services.

The distribution of the primary diagnoses in the sample indicates that most of these patients have neurologic disorders, followed by congenital diseases or genetic disorders. These findings are similar to those reported in other case series.25–28

The results of our study show that, although the financial assistance program was intended for pediatric patients with CCCs, not all recipients met the criteria for CCC according to the applied stratification tools. Specifically, the PMCA scale classified only 6 out of 10 patients as children with CCCs, and of those, only half met the criteria according to the PedCom scale. This discrepancy may be explained by the fact that, while the eligibility criteria established in the application process called for a report from a medical provider attesting to the clinical condition of the patient,21 the funds were granted strictly according to the order in which applications were received.21 It should be noted that this study was commissioned by the conducted at the request Department of Family, Youth, and Social Affairs with the aim of using the results to optimize the clinical selection criteria for future application cycles or similar benefit programs.

Our findings highlight the variability in the results obtained with the various tools currently available for the purpose, as well as the need to standardize the terminology and tools used for assessing medical complexity and to improve care and support strategies.

There are many reasons for this variability. One of them may concern the criteria used by each tool to define complexity. In this regard, the PMCA identifies this population through a definition based on the primary diagnosis (ICD-10). It is very easy to use, allowing quick identification of patients with CCCs.8,23

In contrast, the PedCom scale identifies patients with CCCs based on a set of multidimensional items that assess the medical and psychosocial complexity of patients with excellent sensitivity and specificity. On the other hand, due to the number of items in the scale, more time is required for its administration.9,24

The analysis of the variation in PedCom scores among patients with the same primary diagnosis highlight the significance of these differences. The results show that the criteria that determine whether a pediatric patient has a CCC are more closely related to clinical and psychosocial factors associated with the underlying condition than to the diagnosis in itself.

Therefore, while diagnosis-based identification tools are useful for initial screening, other tools that take relevant variables into in addition to the diagnosis should be used for stratification.10 At the individual level, these tools can be useful for monitoring the level of complexity of specific patients over time, but they can also be used to identify and stratify the complexity of large cohorts of patients by incorporating variables beyond the primary diagnosis.

This study has several limitations inherent to its design. First, it is a retrospective study based on the review of existing files and health records, so some relevant variables may not have been adequately documented, which could affect the accuracy of the classification obtained through the applied scales.

On the other hand, there are several potential sources of selection bias. First, the sample was selected using simple random sampling without stratification, so it is possible that certain social groups or diagnostic categories were under- or overrepresented. At the same time, the analysis may have underestimated the complexity of CCCs in the region, as it included data for families that applied for assistance in the 2023 application cycle. However, a similar financial assistance program was open for applications in 2022, in this case limited to patients receiving pediatric palliative care. Applicants who received financial assistance through that program were automatically excluded from the 2023 application process. Therefore, it is reasonable to assume that patients with more complex conditions would have been left out of the sample because they had applied for financial assistance in the previous application cycle.

The application process called for, among other requirements, submitting a signed statement by a clinician attesting to the diagnosis of a medically complex chronic condition, cancer, or other severe illness associated with high resource utilization and still present at the time of the application.21 The need to submit this documentation, combined with the difficulties associated with the administrative process involved in applying, whether in person or online, may have limited access to disadvantaged families or families with language barriers, leading to underrepresentation in the sample.

Given the voluntary nature of the application process, we cannot rule out the possibility of selection bias, as some families may not have requested financial assistance because they were unaware that it was available.

There is also a risk of classification bias stemming from the sequential use of two tools, starting with the PMCA, which is less sensitive, because it is easier to administer as a screening tool compared to the PedCom, which requires more time because it has more items.

One of the main strengths of this study is that it is the first study in Spain to analyze the clinical characteristics of children with CCCs from the perspective of social services. In addition, the results underscore the importance of using stratification tools adapted to this population that take into account both clinical and psychosocial aspects, beyond the primary diagnosis, as is the case of the PedCom scale.9,24

The sequential stratification of children with CCCs using the PMCA8,23 and PedCom9,24 scales can help ensure that financial, social, and family support resources are allocated equitably to those who need them most, guaranteeing priority access to public resources to improve the quality of life for patients and their caregivers.

In the field of pediatrics, complexity does not depend solely on the primary diagnosis but on multiple clinical and psychosocial factors, which highlights the need of combined approaches to enable appropriate stratification and care planning.

The Department of Family, Youth, and Social Affairs of the Community of Madrid, via the Sub-Directorate General for Child Protection, awarded ;18 113.70 (Program 232F, Item 22706) to fund this study.