Fondazione Hospice MT. C. Seràgnoli, Via Marconi 43/45 - 40010, BO, Bentivoglio, Italy.
Direzione Generale Cura della Persona, Salute e Welfare, Servizio Assistenza Ospedaliera, Bologna, Italy.
Ital J Pediatr. 2021 May 12;47(1):110. doi: 10.1186/s13052-021-01059-8.
Children with medical complexity (CMC) have been defined (Cohen et al., Pediatrics 127: 529-538, 2011.) as an emerging population potentially eligible for PPC. The current study investigated the prevalence of children with medical complexities eligible for a local palliative care network, including a paediatric hospice.
A retrospective cross-sectional survey has been conducted using children clinical charts from 14 local health authorities of our region (Emilia Romagna, Italy).
The total number of children with life-limiting conditions was 601, with a mean age of 7.4 ± 4.8 years, a prevalence of 8.4/10.000 residents < 19 years of age and a heterogeneous presentation among the provinces in the region. Neurological diseases affect 51% of patients, followed by congenital diseases (21%) and pathologies originating in the perinatal period (6%), while only 4% of the patients had a cancer diagnosis. Patients are dependent from many devices and supports: 32% had a gastrostomy, 22% a respiratory support and 15% of patients had both of them.
Observed regional prevalence of complex needs is lower than that published from other European countries. More research is needed to raise awareness of palliative care for children with medical complexities in order to address specific needs.
患有复杂疾病的儿童（CMC）的定义（Cohen 等人，儿科学杂志 127：529-538,2011）是一个新兴的潜在符合 PPC 资格的人群。本研究调查了当地姑息治疗网络（包括儿科临终关怀）有资格获得姑息治疗的患有复杂疾病的儿童的患病率。
使用来自我们地区（意大利艾米利亚-罗马涅大区）的 14 个地方卫生当局的儿童临床图表进行了回顾性横断面调查。
患有生命有限疾病的儿童总数为 601 名，平均年龄为 7.4±4.8 岁，患病率为 8.4/10.000 名年龄<19 岁的居民，且该地区各省份的表现存在差异。神经疾病影响 51%的患者，其次是先天性疾病（21%）和围产期起源的疾病（6%），而只有 4%的患者患有癌症。患者依赖于许多设备和支持：32%的患者有胃造口术，22%的患者有呼吸支持，15%的患者两者兼有。
观察到的复杂需求的区域患病率低于其他欧洲国家公布的患病率。需要进行更多的研究来提高对患有复杂疾病的儿童姑息治疗的认识，以满足他们的特定需求。
