The study investigates the prevalence of CMC in the RER while outlining their PC needs. To our knowledge, this is the first survey in the nation directly involving healthcare professionals to apply definitions and criteria for PPC to their patients. This is also the first survey in a specific region in Italy undertaken prior to opening a new Children’s Hospice.
Our study shows a lower prevalence of CMC, with an overall prevalence of 8.44 per 10,000 inhabitants < 19 years of age. This result is interesting, compared to the need for PPC in other countries with high/upper middle incomes, reported [3, 11] in a range between 20 and 30 children per 10,000 inhabitants < 19 years of age. More recently, a study published in the UK [12] has shown an increase in the number of children to 66.4 per 10,000 children living with life-limiting condition. Our findings are similar to that seen in a nearby region in 2008 when a prevalence of 9.5/10.000 was found [13]. Our different results may depend on two issues. First, when we performed the survey newer and more accurate eligibility criteria [14, 15] were not available. Moreover, there may have been some variation in the understanding of PC from health care professionals involved: as demonstrated by literature the awareness of PPC by health professionals is variable [16].
In addition, our patients have a high average clinical complexity and could represent an estimation of patients potentially referable to a specialist level PCC services, instead of including the complete set of patients eligible to the various level of PPC care. As services become more developed within the region and more professionals are sensitised to PPC, the number identified as having a CMC, and therefore be potentially eligible for PC, may increase.
According to our survey, approximately half (51%) of the children had neurological conditions, the single most frequent diagnosis was cerebral palsy (n = 116–19.3%). This result is in line with an extensive study performed in the UK in the years 2011–2012 [13] of children with life-limiting diseases, aiming to identify prevalence of need for palliative and supportive care. It found similar mean age (8 years) and prevalence (8–10 per 10,000 children), with the majority of patients having neurological or congenital diseases. On the contrary, studies from the US [17] and France [18] reported higher oncology prevalence (30 and 26% respectively) whilst in Japan [19] they reported a similar prevalence of oncological diseases (7%). The high prevalence of neurological diseases has already been described in the USA and Canada [20] and highlighted by a recent review on PC for paediatric neurology [21]. A major study in Italy showed more than 300,000 (0–17-year-old) hospital admissions involving 12,000 children eligible for PPC [22]. The study does not give the percentage of oncological patients (who went to hospital mainly for disease management or diagnostic and therapeutic procedures) and non-oncological patients, who were admitted for a variety of diseases or complications (neurological 34%, respiratory 25%, digestive 14%, congenital 4%, perinatal 7%, others 16%).
The high utilisation of medical aids and devices described in our study is in line with other national studies reporting at least two medical aids/devices per child with regards to respiratory, feeding, pain and seizures [23, 24]. Children wih multiple chronic complex condition and neurological impairment, together with the use of technological assistance are known to have higher access to health services and assistance costs [25].
The results presented here have been instrumental in incorporating WHO guidelines for [26] planning our regional service based on actual numbers, and observed needs of local CMC, and will be the basis on which to try to fulfil major PPC challenges over the next year, such as allowing equal access to PPC services, integration between PPC teams and facilitation of continuous care between hospital and community [1]. What is anticipated is a PPC network, covering the entire area of RER and including both home care and hospital care together with one regional children’s hospice, as an efficient and effective model of care. A specialised PPC team will be the reference for network professionals, managing and making the best use of health services in response to specific patients and caregiver needs.
Less severe patients are probably still hidden to our PPC Network, in particular the neonates and premature babies [27].
Perinatal PPC was not included, although it has been recognised internationally and nationally [28] as an important component of PPC, thus having an impact on the prevalence, as the Global Atlas for PC at the end of life identifies 14.64% of children < 15 needing PC at the end-of-life are neonates [29].
According to our results, only 4% of children having cancer. When further examined, these 23 cases were those receiving end-of-life care. Since we mainly measured health services consumption it is likely that we missed many oncological patients with low access to such services, especially as outpatients, although they may have had a potentially poor prognosis and be eligible for early PPC.
Our attempt to describe the complexity was limited: ACCAPED scoring is designed to assess only clinical complexity. We have therefore missed the full picture of patient and his/her family/caregiver complexity: health being only part of a much broader scenario that usually includes school, recreation, community, self-support, advocacy, leadership and financial issues. Such a full approach would provide a proactive, rather than reactive, care so that critical medical and health events are avoided to the greatest extent possible [30].