Casa an Research Letters
Fragomented Health Care Delivery in Ichthyosis
Dispersión en la atención médica de los pacientes con ictiosis
A. Hernández-Martína,
, P. Dávila'Seijob, J.M. Soria de Franciscoc, M.I. Arroyo-Manzanald, I. García-Dovale
Autor para correspondencia
a Servicio de Dermatología, Hospital Infantil del Niño Jesús, Madrid, Spain
b Departamento de Dermatología y Venereología. Umeå University Hospital. Umeå, Suecia, Spain
c Miembro Directivo de la Asociación Española de Ictiosis (ASIC)
d Centro de Referencia Estatal de Atención a personas con Enfermedades Raras y sus familias, Burgos, Spain
e Servicio de Dermatología, Complexo Hospitalario Universitario de Santiago de Compostela, Santiago de Compostela, Spain
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Hernández-Martín, P. Dávila'Seijo, J.M. Soria de Francisco, M.I. Arroyo-Manzanal, I. García-Doval" "autores" => array:5 [ 0 => array:4 [ "nombre" => "A." "apellidos" => "Hernández-Martín" "email" => array:1 [ 0 => "ahernandez_hnj@yahoo.es" ] "referencia" => array:2 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff0005" ] 1 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">*</span>" "identificador" => "cor0005" ] ] ] 1 => array:3 [ "nombre" => "P." "apellidos" => "Dávila'Seijo" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "aff0010" ] ] ] 2 => array:3 [ "nombre" => "J.M." "apellidos" => "Soria de Francisco" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">c</span>" "identificador" => "aff0015" ] ] ] 3 => array:3 [ "nombre" => "M.I." "apellidos" => "Arroyo-Manzanal" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">d</span>" "identificador" => "aff0020" ] ] ] 4 => array:3 [ "nombre" => "I." "apellidos" => "García-Doval" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">e</span>" "identificador" => "aff0025" ] ] ] ] "afiliaciones" => array:5 [ 0 => array:3 [ "entidad" => "Servicio de Dermatología, Hospital Infantil del Niño Jesús, Madrid, Spain" "etiqueta" => "a" "identificador" => "aff0005" ] 1 => array:3 [ "entidad" => "Departamento de Dermatología y Venereología. Umeå University Hospital. Umeå, Suecia, Spain" "etiqueta" => "b" "identificador" => "aff0010" ] 2 => array:3 [ "entidad" => "Miembro Directivo de la Asociación Española de Ictiosis (ASIC)" "etiqueta" => "c" "identificador" => "aff0015" ] 3 => array:3 [ "entidad" => "Centro de Referencia Estatal de Atención a personas con Enfermedades Raras y sus familias, Burgos, Spain" "etiqueta" => "d" "identificador" => "aff0020" ] 4 => array:3 [ "entidad" => "Servicio de Dermatología, Complexo Hospitalario Universitario de Santiago de Compostela, Santiago de Compostela, Spain" "etiqueta" => "e" "identificador" => "aff0025" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "Corresponding author." ] ] ] ] "titulosAlternativos" => array:1 [ "es" => array:1 [ "titulo" => "Dispersión en la atención médica de los pacientes con ictiosis" ] ] "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Congenital ichthyosis is a very rare genetic disease—an estimated 294 patients in Spain are thought to be affected.<a class="elsevierStyleCrossRef" href="#bib0015"><span class="elsevierStyleSup">1</span></a> The disease usually has a large impact on patients’ quality of life because, regardless of the type of ichthyosis, patients may experience intractable pruritus, hyperhidrosis, failure to thrive during childhood, cicatricial alopecia, repeated keratitis, conductive hearing loss, and social problems in addition to cutaneous manifestations. As a result, in addition to dermatologists, most patients need to be attended by other specialists such as ophthalmologists, ear-nose-throat specialists, endocrinologists, nutrition experts, and psychologists. If it is rare for many dermatologists to see a patient with ichthyosis, it is easy to imagine the limited experience that many of these other specialists have.</p><p id="par0010" class="elsevierStylePara elsevierViewall">During the first quarter of 2014, we conducted a survey of the members of the Spanish Ichthyosis Association (abbreviated as ASIC in Spanish) to find out the name of the attending physicians. Our aim was to determine whether dermatologists, ophthalmologists, ear-nose-throat specialists, and endocrinologists had experience in ichthyosis. Seventy-two ASIC members responded; in addition, ASIC has data on the dermatologists who attended a further 35 patients. In total, the ASIC members mentioned 70 different dermatologists. Of these, only 3 were mentioned by more than 5 different patients, 5 were the regular dermatologist for 3 or 4 patients, 9 saw at most 2 patients regularly, and the remaining dermatologists (up to a total of 53) were mentioned by a single patient. A similar picture emerged with the other specialists, who were mentioned in the survey by at least half of the patients: 4 ophthalmologists were mentioned by 2 different patients, only 1 ear-nose-throat specialist was mentioned by more than 1 patient, and no endocrinologist of the 6 mentioned had more than one patient with ichthyosis (<a class="elsevierStyleCrossRef" href="#tbl0005">Table 1</a>). Interestingly, several members highlighted that although they regularly attended appointments with these specialists, they were not usually seen by the same physician. In summary, our survey shows that very few physicians have experience with a significant number of patients with ichthyosis, and that it is likely that most patients are not attended regularly by other specialists who could help them with some of their possible comorbidities.</p><elsevierMultimedia ident="tbl0005"></elsevierMultimedia><p id="par0015" class="elsevierStylePara elsevierViewall">It is important to highlight possible biases in our survey. On the one hand, not all patients with ichthyosis belong to the ASIC (in fact, we have the names of dermatologists who attend approximately one third of all Spanish patients), and so the data only partially reflect the true situation. On the other, it is logical to think that dermatologists who recommend joining the ASIC are those who are more strongly represented in the survey. In any case, the proportion of dermatologists, ophthalmologists, and ear-nose-throat specialists who attended a single patient is noteworthy and probably reflects the true situation: most patients with ichthyosis lack a multidisciplinary follow-up, and are also seen by specialists with few other similar patients.</p><p id="par0020" class="elsevierStylePara elsevierViewall">In rare diseases, to become an expert requires experience, but this can only be acquired if professionals attend a significant number of patients. The creation of official reference centers would help referral of patients and group a significant number of them together. This in turn could help to improve the care that they receive.<a class="elsevierStyleCrossRef" href="#bib0020"><span class="elsevierStyleSup">2</span></a></p></span>" "pdfFichero" => "main.pdf" "tienePdf" => true "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0010">Please cite this article as: Hernández-Martín A, Dávila'Seijo P, Soria de Francisco J, Arroyo-Manzanal M, García-Doval I. Dispersión en la atención médica de los pacientes con ictiosis. Actas Dermosifiliogr. 2015;106:514–515.</p>" ] ] "multimedia" => array:1 [ 0 => array:7 [ "identificador" => "tbl0005" "etiqueta" => "Table 1" "tipo" => "MULTIMEDIATABLA" "mostrarFloat" => true "mostrarDisplay" => false "tabla" => array:2 [ "tablatextoimagen" => array:1 [ 0 => array:2 [ "tabla" => array:1 [ 0 => """ <table border="0" frame="\n \t\t\t\t\tvoid\n \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head " align="" valign="top" scope="col" style="border-bottom: 2px solid black"> \t\t\t\t\t\t\n \t\t\t\t</th><th class="td" title="table-head " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Dermatologistsn<span class="elsevierStyleHsp" style=""></span>=<span class="elsevierStyleHsp" style=""></span>70 \t\t\t\t\t\t\n \t\t\t\t</th><th class="td" title="table-head " align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Ophthalmologistsn<span class="elsevierStyleHsp" style=""></span>=<span 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valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Attend 6 patients \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">1 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Attend 5 patients \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">1 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Attend 4 patients \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">3 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Attend 3 patients \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">2 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Attend 2 patients \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">9 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">4 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">2 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">– \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Attend 1 patient \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">53 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">23 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">18 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">6 \t\t\t\t\t\t\n \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry " align="left" valign="top">Total Patients \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="char" valign="top">107 (72<span class="elsevierStyleHsp" style=""></span>+<span class="elsevierStyleHsp" style=""></span>35<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">a</span></a>) \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">31/72 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">22/72 \t\t\t\t\t\t\n \t\t\t\t</td><td class="td" title="table-entry " align="left" valign="top">6/72 \t\t\t\t\t\t\n \t\t\t\t</td></tr></tbody></table> """ ] "imagenFichero" => array:1 [ 0 => "xTab849494.png" ] ] ] "notaPie" => array:1 [ 0 => array:3 [ "identificador" => "tblfn0005" "etiqueta" => "a" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Members of the ASIC who did not respond to the survey but whose information was available.</p>" ] ] ] "descripcion" => array:1 [ "en" => "<p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Proportion of Patients With Ichthyosis Who Were Attended by the Same Specialist, According to the April 2014 Survey of Members of the Spanish Ichthyosis Association (ASIC).</p>" ] ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0005" "bibliografiaReferencia" => array:2 [ 0 => array:3 [ "identificador" => "bib0015" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Prevalence of autosomal recessive congenital ichthyosis: A population-based study using the capture-recapture method in Spain" "autores" => array:1 [ 0 => array:2 [ "etal" => true "autores" => array:6 [ 0 => "A. Hernández-Martín" 1 => "I. Garcia-Doval" 2 => "B. Aranegui" 3 => "P. de Unamuno" 4 => "L. Rodríguez-Pazos" 5 => "M.A. González-Enseñat" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1016/j.jaad.2011.07.033" "Revista" => array:6 [ "tituloSerie" => "J Am Acad Dermatol" "fecha" => "2012" "volumen" => "67" "paginaInicial" => "240" "paginaFinal" => "244" "link" => array:1 [ 0 => array:2 [ "url" => "https://www.ncbi.nlm.nih.gov/pubmed/22000705" "web" => "Medline" ] ] ] ] ] ] ] ] 1 => array:3 [ "identificador" => "bib0020" "etiqueta" => "2" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Reference centers for epidermolysis bullosa and ichthyosis: An urgent need in Spain" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:6 [ 0 => "A. Hernández-Martin" 1 => "R. de Lucas" 2 => "A. Vicente" 3 => "E. Baselga" 4 => "E. Morcillo-Makow" 5 => "M.I. Arroyo Manzanal" ] ] ] ] ] "host" => array:1 [ 0 => array:2 [ "doi" => "10.1016/j.adengl.2013.04.001" "Revista" => array:6 [ "tituloSerie" => "Actas Dermosifiliogr" "fecha" => "2013" "volumen" => "104" "paginaInicial" => "363" "paginaFinal" => "366" "link" => array:1 [ 0 => array:2 [ "url" => "https://www.ncbi.nlm.nih.gov/pubmed/23665435" "web" => "Medline" ] ] ] ] ] ] ] ] ] ] ] ] ] "idiomaDefecto" => "en" "url" => "/15782190/0000010600000006/v1_201506260207/S1578219015001560/v1_201506260207/en/main.assets" "Apartado" => array:4 [ "identificador" => "6157" "tipo" => "SECCION" "en" => array:2 [ "titulo" => "Case and Research Letters" "idiomaDefecto" => true ] "idiomaDefecto" => "en" ] "PDF" => "https://static.elsevier.es/multimedia/15782190/0000010600000006/v1_201506260207/S1578219015001560/v1_201506260207/en/main.pdf?idApp=UINPBA000044&text.app=https://actasdermo.org/" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S1578219015001560?idApp=UINPBA000044" ]
| año/Mes | Html | Total | |
|---|---|---|---|
| 2024 Noviembre | 4 | 9 | 13 |
| 2024 Octubre | 55 | 35 | 90 |
| 2024 Septiembre | 74 | 37 | 111 |
| 2024 Agosto | 92 | 49 | 141 |
| 2024 Julio | 69 | 44 | 113 |
| 2024 Junio | 64 | 40 | 104 |
| 2024 Mayo | 75 | 32 | 107 |
| 2024 Abril | 48 | 17 | 65 |
| 2024 Marzo | 54 | 28 | 82 |
| 2024 Febrero | 54 | 25 | 79 |
| 2024 Enero | 32 | 27 | 59 |
| 2023 Diciembre | 46 | 16 | 62 |
| 2023 Noviembre | 47 | 34 | 81 |
| 2023 Octubre | 48 | 35 | 83 |
| 2023 Septiembre | 44 | 26 | 70 |
| 2023 Agosto | 32 | 13 | 45 |
| 2023 Julio | 33 | 32 | 65 |
| 2023 Junio | 38 | 21 | 59 |
| 2023 Mayo | 26 | 24 | 50 |
| 2023 Abril | 27 | 22 | 49 |
| 2023 Marzo | 23 | 23 | 46 |
| 2023 Febrero | 36 | 17 | 53 |
| 2023 Enero | 33 | 25 | 58 |
| 2022 Diciembre | 41 | 40 | 81 |
| 2022 Noviembre | 17 | 22 | 39 |
| 2022 Octubre | 21 | 29 | 50 |
| 2022 Septiembre | 17 | 49 | 66 |
| 2022 Agosto | 23 | 31 | 54 |
| 2022 Julio | 16 | 26 | 42 |
| 2022 Junio | 18 | 20 | 38 |
| 2022 Mayo | 23 | 27 | 50 |
| 2022 Abril | 24 | 37 | 61 |
| 2022 Marzo | 38 | 50 | 88 |
| 2022 Febrero | 27 | 22 | 49 |
| 2022 Enero | 26 | 36 | 62 |
| 2021 Diciembre | 24 | 34 | 58 |
| 2021 Noviembre | 27 | 41 | 68 |
| 2021 Octubre | 26 | 47 | 73 |
| 2021 Septiembre | 22 | 37 | 59 |
| 2021 Agosto | 20 | 22 | 42 |
| 2021 Julio | 17 | 30 | 47 |
| 2021 Junio | 20 | 11 | 31 |
| 2021 Mayo | 29 | 29 | 58 |
| 2021 Abril | 45 | 41 | 86 |
| 2021 Marzo | 50 | 14 | 64 |
| 2021 Febrero | 49 | 31 | 80 |
| 2021 Enero | 33 | 15 | 48 |
| 2020 Diciembre | 44 | 19 | 63 |
| 2020 Noviembre | 18 | 22 | 40 |
| 2020 Octubre | 25 | 8 | 33 |
| 2020 Septiembre | 32 | 16 | 48 |
| 2020 Agosto | 20 | 35 | 55 |
| 2020 Julio | 26 | 12 | 38 |
| 2020 Junio | 36 | 31 | 67 |
| 2020 Mayo | 17 | 14 | 31 |
| 2020 Abril | 43 | 14 | 57 |
| 2020 Marzo | 28 | 20 | 48 |
| 2020 Febrero | 6 | 5 | 11 |
| 2020 Enero | 4 | 2 | 6 |
| 2019 Diciembre | 8 | 4 | 12 |
| 2019 Noviembre | 4 | 5 | 9 |
| 2019 Octubre | 2 | 1 | 3 |
| 2019 Septiembre | 4 | 1 | 5 |
| 2019 Agosto | 4 | 3 | 7 |
| 2019 Julio | 8 | 5 | 13 |
| 2019 Junio | 4 | 15 | 19 |
| 2019 Mayo | 7 | 11 | 18 |
| 2019 Abril | 2 | 18 | 20 |
| 2019 Marzo | 0 | 4 | 4 |
| 2019 Febrero | 4 | 3 | 7 |
| 2019 Enero | 2 | 5 | 7 |
| 2018 Diciembre | 1 | 6 | 7 |
| 2018 Noviembre | 2 | 0 | 2 |
| 2018 Octubre | 3 | 0 | 3 |
| 2018 Septiembre | 4 | 0 | 4 |
| 2018 Julio | 0 | 3 | 3 |
| 2018 Marzo | 0 | 1 | 1 |
| 2018 Febrero | 19 | 3 | 22 |
| 2018 Enero | 20 | 3 | 23 |
| 2017 Diciembre | 22 | 10 | 32 |
| 2017 Noviembre | 17 | 4 | 21 |
| 2017 Octubre | 22 | 4 | 26 |
| 2017 Septiembre | 18 | 10 | 28 |
| 2017 Agosto | 25 | 4 | 29 |
| 2017 Julio | 14 | 10 | 24 |
| 2017 Junio | 24 | 4 | 28 |
| 2017 Mayo | 19 | 5 | 24 |
| 2017 Abril | 19 | 6 | 25 |
| 2017 Marzo | 24 | 15 | 39 |
| 2017 Febrero | 20 | 8 | 28 |
| 2017 Enero | 12 | 3 | 15 |
| 2016 Diciembre | 26 | 7 | 33 |
| 2016 Noviembre | 36 | 9 | 45 |
| 2016 Octubre | 22 | 21 | 43 |
| 2016 Julio | 7 | 1 | 8 |
| 2016 Junio | 11 | 2 | 13 |
| 2016 Mayo | 8 | 11 | 19 |
| 2016 Abril | 11 | 0 | 11 |
| 2016 Marzo | 13 | 0 | 13 |
| 2016 Febrero | 5 | 1 | 6 |
| 2016 Enero | 2 | 4 | 6 |
| 2015 Octubre | 0 | 1 | 1 |
| 2015 Agosto | 0 | 2 | 2 |
| 2015 Julio | 0 | 1 | 1 |
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