Editorial
Medium to long-term follow-up of premature children and their families in Spain
Seguimiento a medio-largo plazo de los niños prematuros y sus familias en nuestro país
Begoña Loureiroa,◊,
, Thais Agutb,◊, Nuria Boronatc,◊, Miriam Martínez-Biarged,◊
Corresponding author
a Unidad Neonatal y Consulta de Seguimiento, Instituto de Investigación Sanitaria Biocruces Bizkaia, Hospital Universitario Cruces, Barakaldo, Vizcaya, Spain
b Unidad Neonatal y Consulta de Seguimiento, Institut de Recerca Pediàtrica Sant Joan de Déu, Hospital Sant Joan de Déu, Barcelona, Spain
c Unidad Neonatal y Consulta de Seguimiento, Instituto de Investigación Sanitaria La Fe, Hospital Universitario y Politécnico La Fe, Valencia, Spain
d Department of Paediatrics, Imperial College NHS Trust, Hammersmith Hospital, London, United Kingdom
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Hospital Universitario y Politécnico La Fe, Valencia, Spain" "etiqueta" => "c" "identificador" => "aff0015" ] 3 => array:3 [ "entidad" => "Department of Paediatrics, Imperial College NHS Trust, Hammersmith Hospital, London, United Kingdom" "etiqueta" => "d" "identificador" => "aff0020" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "Corresponding author." ] ] ] ] "titulosAlternativos" => array:1 [ "es" => array:1 [ "titulo" => "Seguimiento a medio-largo plazo de los niños prematuros y sus familias en nuestro país" ] ] "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">In recent decades, there have been significant advances in the fields of obstetrics and neonatology.<a class="elsevierStyleCrossRef" href="#bib0055"><span class="elsevierStyleSup">1</span></a> Newborns receive exquisite care in neonatal units thanks to improvements in staff training and the introduction of cutting-edge medical equipment. This has made possible a significant increase in the survival of very preterm newborns. On the other hand, this increase has been associated with a significant decrease in the prevalence of severe neurologic impairment compared to the past, especially when it comes to cerebral palsy (which at present occurs in only 5% of children born before 32 weeks’ gestation), intellectual disability, sensorineural hearing loss and blindness secondary to retinopathy of prematurity. However, other medium- and long-term neurodevelopmental problems (of lesser severity but higher prevalence than the ones just mentioned) have become the focus of interest of health care and education professionals as well as families themselves. At present, vision problems, hearing loss of varying severity, neuropsychological and learning disorders, autism spectrum disorder, attention-deficit hyperactivity disorder and behaviour and conduct disorders are significantly more prevalent in this population compared to the general population, and may be present in up to 50% of children born very preterm.<a class="elsevierStyleCrossRefs" href="#bib0060"><span class="elsevierStyleSup">2,3</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">In Spain, the follow-up conducted after discharge from the neonatal unit of preterm infants could be improved in several ways. Despite efforts made in recent years, including the design and implementation by the Sociedad Española de Neonatología (Spanish Society of Neonatology, SENeo) a national protocol for the follow-up of preterm infants,<a class="elsevierStyleCrossRefs" href="#bib0070"><span class="elsevierStyleSup">4,5</span></a> the quality of the care given to families after discharge is far from guaranteed.</p><p id="par0015" class="elsevierStylePara elsevierViewall">This is due, on one hand, to disparities in the services provided in terms of the varying duration and quality of the care offered by follow-up programmes in different health care facilities and geographical regions. Follow-up units continue to lack appropriate staff, including specialists in neonatology and other professions necessary in multidisciplinary care teams: rehabilitation specialists, physical therapists, speech therapists, occupational therapists, psychologists, etc. (professionals whose work should start while the newborn is still in hospital). Furthermore, only a minority of the neonatologists involved in follow-up programmes have specific training in neurodevelopment and the problems derived from prematurity. On the other hand, the resources available to follow-up programmes to address the needs of these children and their families are insufficient.</p><p id="par0020" class="elsevierStylePara elsevierViewall">On the other hand, the channels for communication and coordination between the different actors involved in care delivery to these families, especially in early childhood education centres, hospital-based follow-up units, primary care and the education system, are poorly developed at the moment.</p><p id="par0025" class="elsevierStylePara elsevierViewall">Lastly, there are no data on the health care and education needs of this population in Spain beyond the age of 2 years. One of the greatest limitations we face is that we do not know the current situation of the school-aged subset of this population. Few studies have been conducted in Spain to analyse these aspects, and nearly all had very small samples.</p><p id="par0030" class="elsevierStylePara elsevierViewall">All of the above hinders the development of follow-up programmes as well as the early detection and rehabilitation of abnormalities that developed through childhood and adolescence.<a class="elsevierStyleCrossRef" href="#bib0080"><span class="elsevierStyleSup">6</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">In this regard, the articles published by Bachiller-Carnicero et al.<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">7</span></a> and Alcántara-Canabal et al.<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">8</span></a> in the current issue of <span class="elsevierStyleSmallCaps">Anales de Pediatría</span> contribute information on the real-world situation of children born preterm in Spain in the past decade. The study by Bachiller-Carnicero et al., conducted in 214 children aged 6 years who were born with a weight of less than 1500<span class="elsevierStyleHsp" style=""></span>g or before 32 weeks’ gestation confirmed that, as observed in neighbouring countries, these children are more vulnerable to psychosocial and mood disorders and experience greater difficulty in their relationships with peers. Alcántara-Canabal et al. broached a subject that is relatively unknown in Spain: the impact on families of children born preterm; the study found that it is not preterm birth itself but the presence of developmental abnormalities resulting from prematurity that determines the level of stress and overburden in caregivers.</p><p id="par0040" class="elsevierStylePara elsevierViewall">In light of the obvious need to improve the quality of the care received by these families after discharge from hospital, which was highlighted by a recent article based on data from a nationwide survey to assess follow-up services in Spain,<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">9</span></a> we suggest some of the strategies that could be pursued to this end:<ul class="elsevierStyleList" id="lis0005"><li class="elsevierStyleListItem" id="lsti0005"><span class="elsevierStyleLabel">–</span><p id="par0045" class="elsevierStylePara elsevierViewall">Specific education and training for neonatologists in charge of the follow-up of these patients. Specific training on this subject should be part of the educational and training curriculum of the medical specialty of neonatology.</p></li><li class="elsevierStyleListItem" id="lsti0010"><span class="elsevierStyleLabel">–</span><p id="par0050" class="elsevierStylePara elsevierViewall">Allocation to this population of a greater number of providers in different specialties, including neonatologists, neuropsychiatrists, clinical psychologists and social workers.</p></li><li class="elsevierStyleListItem" id="lsti0015"><span class="elsevierStyleLabel">–</span><p id="par0055" class="elsevierStylePara elsevierViewall">Extension of follow-up programmes beyond early childhood, at least through age 6–7 years. Restricting follow-up to the first 2 years of life neglects potential future needs of these children and their families.</p></li><li class="elsevierStyleListItem" id="lsti0020"><span class="elsevierStyleLabel">–</span><p id="par0060" class="elsevierStylePara elsevierViewall">Optimisation of nationwide follow-up registers, including data on long-term morbidity. It is essential for us to know the actual prevalence of the different disorders and their severity in Spain to be able to offer efficient and high-quality care.</p></li><li class="elsevierStyleListItem" id="lsti0025"><span class="elsevierStyleLabel">–</span><p id="par0065" class="elsevierStylePara elsevierViewall">Creation of specialised and multidisciplinary follow-up units for the comprehensive management of these families and for their subsequent referral to the most appropriate rehabilitation and early intervention services based on their specific needs.</p></li><li class="elsevierStyleListItem" id="lsti0030"><span class="elsevierStyleLabel">–</span><p id="par0070" class="elsevierStylePara elsevierViewall">Development of adequate communication channels to promote coordination between the health care providers that manage these patients at the outpatient and inpatient levels.</p></li></ul></p><p id="par0075" class="elsevierStylePara elsevierViewall">We are aware that the goals we intend to pursue are ambitious, but we believe that children who are born preterm today in Spain not only deserve the best perinatal care that we can offer, but also all the care and interventions that may promote their healthy development and wellbeing. Only then can we guarantee the adequate integration of these children in the family, the education system and society.<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">10</span></a></p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Funding</span><p id="par0080" class="elsevierStylePara elsevierViewall">Begoña Loureiro has received funds from <span class="elsevierStyleGrantSponsor" id="gs1">RETICS (Cooperative Thematic Research Networks)</span>; PN R + D + I 2018-2021 (Spain), ISCIII-General Subdirectorate for Research and Promotion of Research and <span class="elsevierStyleGrantSponsor" id="gs2">the European Development Fund Regional (ERDF)</span> under grant number <span class="elsevierStyleGrantNumber" refid="gs1">RD16/0022</span>.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0005" "titulo" => "Funding" ] 1 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "NotaPie" => array:2 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as: Loureiro B, Agut T, Boronat N, Martínez-Biarge M. Seguimiento a medio-largo plazo de los niños prematuros y sus familias en nuestro país. An Pediatr (Barc). 2019;91:139–141.</p>" ] 1 => array:3 [ "etiqueta" => "◊" "nota" => "<p class="elsevierStyleNotepara" id="npar0010">Grupo Cerebro Neonatal de la Fundación NeNe.</p>" "identificador" => "fn0005" ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0015" "bibliografiaReferencia" => array:10 [ 0 => array:3 [ "identificador" => "bib0055" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:1 [ "referenciaCompleta" => "March of Dimes, PMNCH, Save the Children, WHO. Born too soon: the global action report on preterm birth. Howson CP, Kinney MV, Lawn JE. World Health Organization. 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| Year/Month | Html | Total | |
|---|---|---|---|
| 2024 November | 4 | 5 | 9 |
| 2024 October | 27 | 31 | 58 |
| 2024 September | 30 | 27 | 57 |
| 2024 August | 45 | 59 | 104 |
| 2024 July | 31 | 21 | 52 |
| 2024 June | 32 | 25 | 57 |
| 2024 May | 35 | 27 | 62 |
| 2024 April | 35 | 33 | 68 |
| 2024 March | 29 | 26 | 55 |
| 2024 February | 33 | 18 | 51 |
| 2024 January | 21 | 23 | 44 |
| 2023 December | 23 | 28 | 51 |
| 2023 November | 28 | 24 | 52 |
| 2023 October | 27 | 19 | 46 |
| 2023 September | 20 | 22 | 42 |
| 2023 August | 18 | 13 | 31 |
| 2023 July | 26 | 28 | 54 |
| 2023 June | 25 | 26 | 51 |
| 2023 May | 22 | 15 | 37 |
| 2023 April | 20 | 12 | 32 |
| 2023 March | 38 | 21 | 59 |
| 2023 February | 39 | 15 | 54 |
| 2023 January | 20 | 10 | 30 |
| 2022 December | 51 | 26 | 77 |
| 2022 November | 38 | 32 | 70 |
| 2022 October | 58 | 40 | 98 |
| 2022 September | 27 | 21 | 48 |
| 2022 August | 35 | 54 | 89 |
| 2022 July | 32 | 40 | 72 |
| 2022 June | 23 | 23 | 46 |
| 2022 May | 31 | 30 | 61 |
| 2022 April | 28 | 36 | 64 |
| 2022 March | 41 | 40 | 81 |
| 2022 February | 27 | 26 | 53 |
| 2022 January | 24 | 32 | 56 |
| 2021 December | 33 | 41 | 74 |
| 2021 November | 54 | 38 | 92 |
| 2021 October | 73 | 64 | 137 |
| 2021 September | 40 | 37 | 77 |
| 2021 August | 30 | 36 | 66 |
| 2021 July | 19 | 29 | 48 |
| 2021 June | 30 | 24 | 54 |
| 2021 May | 39 | 34 | 73 |
| 2021 April | 75 | 60 | 135 |
| 2021 March | 38 | 26 | 64 |
| 2021 February | 27 | 14 | 41 |
| 2021 January | 50 | 16 | 66 |
| 2020 December | 55 | 10 | 65 |
| 2020 November | 22 | 19 | 41 |
| 2020 October | 16 | 20 | 36 |
| 2020 September | 29 | 14 | 43 |
| 2020 August | 21 | 7 | 28 |
| 2020 July | 20 | 9 | 29 |
| 2020 June | 15 | 7 | 22 |
| 2020 May | 53 | 13 | 66 |
| 2020 April | 34 | 12 | 46 |
| 2020 March | 28 | 11 | 39 |
| 2020 February | 31 | 12 | 43 |
| 2020 January | 18 | 10 | 28 |
| 2019 December | 46 | 16 | 62 |
| 2019 November | 41 | 9 | 50 |
| 2019 October | 38 | 12 | 50 |
| 2019 September | 83 | 21 | 104 |
| 2019 August | 10 | 8 | 18 |
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